SOCIOLOGICAL REFLECTIONS

ON THE NEUROSCIENCES
ADVANCES IN MEDICAL
SOCIOLOGY
Series Editor: Barbara Katz Rothman
Series Editor for Volumes 5–6: Gary L. Albrecht
Series Editor for Volumes 7–8: Judith A. Levy
Recent Volumes:

Volume 5: Quality of Life in Health Care – Edited by

Ray Fitzpatrick
Volume 6: Case and Care Management – Edited by
Gary L. Albrecht
Volume 7: Emergent Issues in the Field of Drug Abuse –
Edited by Judith A. Levy, Richard C. Stephens
and Duane C. McBride
Volume 8: Social Networks and Health – Edited by
Bernice A. Pescosolido and Judith A. Levy
Volume 9: Bioethical Issues, Sociological Perspectives –
Edited by Barbara K. Rothman,
Elizabeth M. Armstrong and Rebecca Tiger
Volume 10: Patients, Consumers and Civil Society – Edited by
Susan M. Chambré and Melinda Goldner
Volume 11: Understanding Emerging Epidemics: Social and
Political Approaches – Edited by Ananya
Mukherjea
Volume 12: Sociology of Diagnosis – Edited by
P. J. McGann and David J. Hutson
ADVANCES IN MEDICAL SOCIOLOGY VOLUME 13

SOCIOLOGICAL
REFLECTIONS ON THE
NEUROSCIENCES
EDITED BY

MARTYN PICKERSGILL
University of Edinburgh, UK

IRA VAN KEULEN

Rathenau Institute, The Netherlands

United Kingdom – North America – Japan

India – Malaysia – China
Emerald Group Publishing Limited
Howard House, Wagon Lane, Bingley BD16 1WA, UK

First edition 2011

Copyright r 2011 Emerald Group Publishing Limited

Reprints and permission service

Contact: booksandseries@emeraldinsight.com

No part of this book may be reproduced, stored in a retrieval system, transmitted in any
form or by any means electronic, mechanical, photocopying, recording or otherwise
without either the prior written permission of the publisher or a licence permitting
restricted copying issued in the UK by The Copyright Licensing Agency and in the USA
by The Copyright Clearance Center. No responsibility is accepted for the accuracy of
information contained in the text, illustrations or advertisements. The opinions expressed
in these chapters are not necessarily those of the Editor or the publisher.

British Library Cataloguing in Publication Data

A catalogue record for this book is available from the British Library

ISBN: 978-1-84855-880-9
ISSN: 1057-6290 (Series)

Emerald Group Publishing

Limited, Howard House,
Environmental Management
System has been certified by
ISOQAR to ISO 14001:2004
standards

Awarded in recognition of
Emerald’s production
department’s adherence to
quality systems and processes
when preparing scholarly
journals for print
CONTENTS

LIST OF CONTRIBUTORS ix

ACKNOWLEDGMENTS xi

INTRODUCTION: NEUROSCIENCE, xiii

IDENTITY AND SOCIETY

PART I: NEUROSCIENCE AS CULTURE

A CHILD SURROUNDS THIS BRAIN: THE FUTURE

OF NEUROLOGICAL DIFFERENCE ACCORDING
TO SCIENTISTS, PARENTS AND DIAGNOSED
YOUNG ADULTS
Rayna Rapp 3

INNOCENT MACHINES: ASPERGER’S SYNDROME

AND THE NEUROSTRUCTURAL SELF
Elizabeth Fein 27

NARRATION AND NEUROSCIENCE:

ENCOUNTERING THE SOCIAL ON
THE ‘‘LAST FRONTIER OF MEDICINE’’
Sara Shostak and Miranda Waggoner 51

ON THE ASSEMBLY LINE: NEUROIMAGING

PRODUCTION IN CLINICAL PRACTICE
Kelly Joyce 75

v
vi CONTENTS

A STONE IN A SPAGHETTI BOWL: THE

BIOLOGICAL AND METAPHORICAL
BRAIN IN NEURO-ONCOLOGY
Sky Gross 99

PART II: HEALTH, ILLNESS AND ENHANCEMENT

IS DEPRESSION A BRAIN DISORDER?

NEUROSCIENCE IN MENTAL HEALTH CARE
Ilpo Hele´n 123

‘‘WE HAVEN’T SLICED OPEN ANYONE’S BRAIN

YET’’: NEUROSCIENCE, EMBODIMENT AND
THE GOVERNANCE OF ADDICTION
Julie Netherland 153

ARE WE RECEPTIVE TO NATURALISTIC

EXPLANATORY MODELS OF OUR DISEASE
EXPERIENCE? APPLICATIONS OF DEEP BRAIN
STIMULATION TO OBSESSIVE COMPULSIVE
DISORDERS AND PARKINSON’S DISEASE
Baptiste Moutaud 179

COGNITIVE ENHANCEMENT? EXPLORING

MODAFINIL USE IN SOCIAL CONTEXT
Catherine M. Coveney 203

PART III: NEUROSCIENCE, THEORY AND SOCIETY

NEUROSCIENCE AND MEDICALISATION:

SOCIOLOGICAL REFLECTIONS ON MEMORY,
MEDICINE AND THE BRAIN
Simon J. Williams, Stephen Katz and Paul Martin 231

SOCIOLOGY OF NEUROSCIENCE OR
NEUROSOCIOLOGY?
Christian von Scheve 255
Contents vii

LOST AND FOUND IN TRANSLATION: POPULAR

NEUROSCIENCE IN THE EMERGING
NEURODISCIPLINES
Jenell M. Johnson and Melissa M. Littlefield 279

FIELD OF DREAMS: A SOCIAL HISTORY OF

NEUROETHICS
Erin C. Conrad and Raymond De Vries 299
LIST OF CONTRIBUTORS

Erin C. Conrad Department of Philosophy, University

College London, London, UK
Catherine M. Coveney Department of Sociology, University of
Warwick, Coventry, UK
Raymond De Vries Center for Bioethics and Social Sciences in
Medicine, Department of Medical
Education, University of Michigan Medical
School, Ann Arbor, MI, USA
Elizabeth Fein Department of Comparative Human
Development, University of Chicago,
Chicago, IL, USA
Sky Gross Department of Medical Education, Sackler
School of Medicine, Tel Aviv University,
Tel Aviv, Israel
Ilpo Hele´n Department of Social Research/Sociology,
University of Helsinki, Helsinki, Finland
Jenell M. Johnson Department of Communication Arts,
University of Wisconsin-Madison,
Madison, WI, USA
Kelly Joyce Sociology Department, College of William
and Mary, Williamsburg, VA, USA
Stephen Katz Department of Sociology, Trent University,
Peterborough, ON, Canada
Melissa M. Littlefield Departments of English, Kinesiology and
Community Health, University of Illinois,
Urbana-Champaign, Urbana, IL, USA
Paul Martin Institute for Science and Society, University
of Nottingham, Nottingham, UK

ix
x LIST OF CONTRIBUTORS

Baptiste Moutaud CERMES3 Research Centre, Université

Paris Descartes, Ecole des Hautes Etudes
en Sciences Sociales, INSERM, CNRS,
Paris, France
Julie Netherland The Graduate Center, City University of
New York, New York, NY, USA
Martyn Pickersgill Centre for Population Health Sciences,
University of Edinburgh Medical School,
Edinburgh, UK
Rayna Rapp Anthropology Department, New York
University, New York, NY, USA
Sara Shostak Department of Sociology, Brandeis
University, Waltham, MA, USA
Ira van Keulen Department of Technology Assessment,
Rathenau Institute, The Hague,
The Netherlands
Christian von Scheve Institute of Sociology, Freie Universitat
Berlin, Berlin, Germany
Miranda Waggoner Department of Sociology, Brandeis
University, Waltham, MA, USA
Simon J. Williams Department of Sociology,
University of Warwick, Coventry, UK
ACKNOWLEDGMENTS

We would like to thank Series Editor Barbara Katz Rothman for fully
supporting us during this project and above all for giving us the opportunity
to edit this volume on the sociology of neuroscience. We also acknowledge
all the efforts of Gemma Halder and the other staff at Emerald who have
worked on this book and facilitated its production. Last, we are grateful to
our home institutions who have generously supported us in this endeavour:
the Rathenau Institute and the Institute for Advanced Studies in the
Humanities, University of Edinburgh.

xi
INTRODUCTION: NEUROSCIENCE,
IDENTITY AND SOCIETY

Neuroscience is an increasingly influential and prestigious branch of

biomedicine, gaining ever more traction within a variety of policy,
professional and public cultures. In part, this has been through the
development of powerful imaging technologies, and wide-ranging funding
mechanisms that support their use, coupled with longstanding cultural
tropes that direct the attention of individuals and communities to the soma
itself as holding valuable truths necessary to render human desires and
behaviours legible and governable (Pickersgill, 2010; Rose, 2007). The brain,
it appears, is everywhere; neuroimages circulate widely, and the messages
these are purported to indicate are frequently heard, if not always acted
upon, in a range of professional and public spaces.
Just as the pervasive talks of genetics once indicated ‘‘a new style of
enchantment with nature’’ (Rosenberg, 2007, p. 97), wherein DNA was
understood to be a code that could be cracked to reveal ‘‘life’s innermost
secrets’’ (ibid.), so now is knowledge of the neurological frequently
portrayed as key to properly appreciating the subtle complexities of
humanity. As various scholars have now shown, the ‘new brain sciences’
have emerged and come to be consolidated as important entry points into
classical questions such as where the origins of madness lie, how moral
responsibility should be adjudicated, and what demarcates normality from
pathology (Lock, in press; Vidal, 2009; Walsh, 2011). A range of
neuroscientists treat these issues as empirical matters to be explored
through elegant experimental methodologies. Sometimes they are met with
scepticism, including from their colleagues, but many members of other
communities have taken up such findings and draw on them to substantiate
or mutate their work practices.
On occasion, neuroscientific studies and the knowledge produced through
them may find their way into newspapers, magazines and radio and
television programmes, wherein contingencies are stripped and agency may
be recast as essentially neurobiological. In particular, studies into gender,
sexuality, adolescence and even political orientation have gained widespread
xiii
xiv INTRODUCTION: NEUROSCIENCE, IDENTITY AND SOCIETY

public attention through the media. Often, scientists distance themselves

from the determinism and reductionism commonly shown in such popular
narratives (Pickersgill, 2009). Indeed, the stories themselves may eschew a
deterministic view of the brain in order to (re)present it as an object to be
actively ‘trained’ to enhance not only its function but also the quality of life
of the individual who possesses or ‘is’ this organ (Pitts-Taylor, 2010). Thus,
‘we’ detach the brain from ourselves to ‘work’ upon it, whilst simultaneously
regarding brain, self and subjectivity as coalesced. In the process, questions
about the ontology of personhood multiply; we are becoming at once more
Cartesian, and less (cf. Hacking, 2006).
As Nadesan puts it, the ‘‘twenty-first century may present new forms of
identity politics embedded in new research in the arenas of genetics and
neuroscience’’ (Nadesan, 2005, p. 211). The neuroscientific reconstruction of
autism is an exemplary case of this, and an entire ‘neurodiversity movement’
has emerged around such discourse. Here, autism self-advocates argue that
their ‘disorder’ is in fact part of the spectrum of ‘normal’ brain function that
should be respected, and hence those identifying themselves as part of the
neurodiversity movement often reject attempts to biomedicalise their
experience of the world, and – in particular – drives to search for a ‘cure’
(Ortega, 2009). In the process, not only pathology but normality is situated
within a neurological rubric – with emancipatory effects. Such movements
call for new analyses of what Petryna (2004) and Rose and Novas (2004) call
‘‘biological citizenship’’. At the same time, however, the limits of public
engagements with neuroscientific knowledge must also be heeded. In
particular, many individuals have an ambivalent relationship with ideas
concerning neuroscience and the neurological, figuring the brain as an
object of ‘‘mundane significance’’ (Pickersgill, Cunningham-Burley, &
Martin, 2011), which only in some places and at certain times is imbued
with salience and linked to subjectivity.
The scope and limits of the public representation of the brain bring to
light the problematics of actual knowledge production in neuroscience itself.
Images of brains, and of the varieties of pathology and normality that are
often taken to be encoded therein, may be regarded as authoritative and
objectives ‘photos’ of neurological matter. However, these images do not in
fact directly capture the realities of brains but are rather highly mediated
representations. Significant statistical and mathematical qualifications have
to be met in order to ensure ‘‘the quality of the brain as an informational
object of study’’ (Beaulieu, 2004, p. 377). Raw data are transformed into
properly normalised and analysable data through mathematically and
automatically averaging the scanned brain by placing it in a digital reference
Introduction: Neuroscience, Identity and Society xv

space (Beaulieu, 2004). A single functional magnetic resonance imaging

(fMRI) scan thus can only be understood in terms of the collection. This
informational turn in the neurosciences – as opposed to the traditionally
important research on the wet brain from brain banks – gives scientists the
opportunity to manipulate the anatomy of the virtual brain in order to
explore and survey the ‘actual’ brain and its functions. In short, ‘‘the virtual
brain is not merely supported by technology, but constituted by it’’
(Beaulieu, 2004, p. 385). As a result, without the expertise to ‘read’ brain
scans, it is easy to oversimplify the scientific results.
Within medicine, the production of reliable images that hold value for
diagnostic practices or therapeutic decision making is a complex process that
exemplifies the specialisation and spatialisation so characteristic of the
modern hospital (cf. Keating & Cambrosio, 2003). At the same time, image-
making is work, and so pulses with the same kinds of dynamics that
structure other forms of professional activities. In the case of MRI for
example, there are many political and economic discourses and institutions
that have contributed to the co-production of neuroimaging as big science
and business. Annual meetings of radiologists are used to market and sell
MRI machines with ever larger magnetic fields resulting in an emphasis on
productivity in clinical work to earn back the high costs of the machines.
Moreover, fee-for-service reimbursement schemes – especially in the United
States – puts pressure on MRI units to increase the volume of scans per day,
resulting in an assembly line kind of practice in these units (Joyce, 2008). The
mundane aspects of imaging as work at the same time contribute to the
authoritativeness of machines like MRI as technological tellers of profound
somatic truths: compelling images come to mediate wider interactions
between doctors, patients and society and gain further salience in the
process.
Neuroscientific knowledge and its representations also have profound
implications for the ways in which health and illness are imagined,
researched and treated. This is strikingly evident in the case of psychiatric
disorders such as schizophrenia and depression, where neuroimaging studies
contribute to the reification of these categories as manifest within the brain.
‘Mental’ disorders become subsumed within a broader rubric of neurolo-
gical disorders, and enrolled as key actants to be deployed in discussions of
the ‘global burden of brain disorders’ that help justify the biomedical
exploration of subjective distress. At the same time, expectations circulate
that neuroscience research will ‘‘conclusively provide an objective basis for
diagnosis’’ (Cullen & Cohn, 2006, p. 118). Yet, it is clear that uncertainties
remain and must be carefully managed within neuroscientific investigations
xvi INTRODUCTION: NEUROSCIENCE, IDENTITY AND SOCIETY

(Pickersgill, 2011a). The ‘‘therapeutic promise’’ (Rubin, 2008, 2009) of

neuroscience is especially significant and further fuels the promissory motors
which power the changing perceptions of neurological and psychiatric
disorder.
The energisation of the therapeutic promise is linked closely with the
elaborate funding strategies that have been available to the neurosciences
over the last twenty years or more. It is clear that the priorities of
organisations like the US National Institutes of Mental Health (NIMH) and
the UK Biotechnology and Biological Sciences Research Council (BBSRC)
and Medical Research Council (MRC) have for some time supported the
ontological and epistemological commitments on which neuroscience is
predicated and have thus championed work in this area. Yet, the immediate
relevance of some neuroscience to clinical practice (especially in the field of
mental health) is not always clear (Cullen & Cohn, 2006; Pickersgill, 2011b).
Today, there is some suggestion that the strategic planning of biomedical
funding bodies is beginning to change; with this, doubts and concerns have
emerged regarding the extent to which existing commitments to sponsor
neuroscientific research will be sustained in the longer-term (Amara, Grillner,
Insel, Nutt, & Tsumoto, 2011). Nevertheless, the power and prestige of
neurologic technoscience seems unlikely to quickly dispel, and its actual and
potential utility to securing the health and wellbeing of patients suffering from
a range of conditions does indeed seem difficult to refute.
While the diagnostic value of neuroimaging techniques has not been so
great as the promissory discourses of the 1990s ‘Decade of the Brain’
suggested it might, the (potential) utility of neuroscience in clinical practice
is nevertheless apparent. This is especially evident when considered in terms
of the development, proliferation and implementation of novel neuro-
technologies to treat mental health patients and those with conditions like
Parkinson’s disease. Neuromodulation devices, for instance, aim to
influence the brain directly – electronically or magnetically, rather than
chemically as for psychopharmaceuticals. Examples of such devices include
invasive methods like deep brain stimulation (DBS) for Parkinson’s disease,
or vagus nerve stimulation for epilepsy and treatment resistant depression,
as well as non-invasive methods. Of note here are transcranial magnetic
stimulation (TMS), which involves a coil producing magnetic fields to
influence the brain activity of severely depressed patients, and neurofeed-
back. This is an indirect method that visualises patients’ own brain activity
through electroencephalography (EEG) or – still experimentally – fMRI in
order for them to learn to modulate this through the performance of
particular cognitive tasks.
Introduction: Neuroscience, Identity and Society xvii

Many of these technologies are regarded as having much the same – and
sometimes better – clinical effects as pharmaceuticals. As medical devices,
they are also easier to introduce to the market (meaning less time and money
are expended). They may be of particular benefit to those individuals for
whom drugs are no longer efficacious, or who have suffered from
undesirable side-effects of medication, which can be experienced as highly
potent and deeply unsettling (Karp, 2006) – though certainly we must be
mindful of the new kinds of unwanted effects that may arise from the use of
these novel neurotechnologies. Safety questions therefore remain para-
mount, and debates have begun regarding whether existing regulatory
frameworks are sufficient and suitable to ensure that these technologies are
used safely (Hines, Lurie, Yu, & Wolfe, 2010; van Keulen, Schuijff, &
van Zoest, 2011).
The prestigious nature of neuroscience has also led to developments in
areas cognate to biomedicine, such as bioethics. Here, a whole sub-discipline
devoted to the ethical implications of and dilemmas enjoined by advances in
neurologic technoscience has emerged: neuroethics (Brosnan, 2011) – a field
born of the collision between ‘‘concerns with aspects of neuroscience’’ and
‘‘cultural ideas about the special importance of the brain’’ (de Vries, 2007,
p. 1). Legal professionals too are increasingly looking towards neuroscience,
with anticipatory discourse in ‘neurolaw’ structured by particular ‘socio-
technical imaginaries’ – ‘‘collectively imagined forms of social life and social
order’’ constitutive of innovations in technology and society (Jasanoff &
Kim, 2009, p. 120). These construct neuroscience as intrinsically normative
and law as a plastic institution in need of reshaping through new knowledge
about the brain concerning free will and responsibility, punishment and
retribution (Pickersgill, 2011c). Neurotechnological lie-detection in parti-
cular has emerged as an important locus of dialogue and debate around
which a range of promises and fears revolve. As Littlefield shows, rather
than simply ‘‘describing the brain and its functions’’, these techniques
‘‘produce and are the products of brain models that reintroduce and
reinforce connections between biology, deviance, and deception’’ (Little-
field, 2009, pp. 383–384).
Other disciplines and traditions are also engaging ever more with
neuroscience – education, for instance, and economics (Schull & Zaloom,
2011). In the latter case, ‘neuroeconomics’ continues efforts to contest the
human being as Homo economicus – a rational actor who calculates
decisions in order to maximise individual gains. Educational neurosciences
specifically aim to support educational practice, with neuroscience deployed
as a means of producing ‘evidence based’ knowledge about aspects of
xviii INTRODUCTION: NEUROSCIENCE, IDENTITY AND SOCIETY

learning like motivation and metacognition, as well as on optimal learning

strategies and environment. Although the aspirations of this subfield are
large (OECD, 2007), bibliometric analysis shows that an interdisciplinary
relationship between the neurosciences and educational and teaching
research is still largely absent (Merkx, Gurney, van de Besselaar, & van
Kooten, 2007). We might also note that articulations between sociology
itself and neuroscience are likewise increasingly in evidence (Bone, 2010;
Franks, 2010). Such rapprochements once again force sociologists to
confront classical questions about the relations between soma and society
which have structured the very nature of the social sciences (Williams, 2006).

SOCIOLOGICAL REFLECTIONS ON THE

NEUROSCIENCES

It should, we hope, by now be clear that neuroscience not simply warrants

but perhaps demands attention from sociologists. However, to-date, debate
around the ‘new brain sciences’ has been limited within sociology; it has
mostly been ethicists who have opened up discussions on the normative and
epistemological issues neuroscience raises. Of course, this is not to say that
sociologists and other social scientists have been blind to the developments
in the brain sciences; a variety of significant and nuanced analyses have
begun to be advanced. There can be no doubt that a rich vein of creative and
insightful scholarship in what might be called the social studies of the
neurosciences is already in existence, and will surely widen. Yet, we can also
see that much work remains to be done. It is our intention that this book
will play an important role in the elaboration of scholarship in the field. To
this end, we have sought and included a range of perspectives from (medical)
sociologists and anthropologists, which vividly illustrate the varied social
life of the neurosciences, and brightly illuminates the diverse conceptualisa-
tions, approaches and standpoints available to sociological analysts.
Sociological Reflections on the Neurosciences is divided into four sections.
In Part I, Neuroscience as Culture, the broad cultural effects of neuroscience
are explored, and the ways in which neurologic technoscience is itself shaped
through existing cultural practices is interrogated. In ‘A child surrounds this
brain: the future of neurological difference according to scientists, parents,
and diagnosed young adults’, Rayna Rapp presents a powerful, ethno-
graphically grounded account of life in a US neuroscientific research centre
concerned with children diagnosed with conditions such as dyslexia and
Introduction: Neuroscience, Identity and Society xix

ADHD and classified for special education services. She vividly illustrates
the cultural dimensions of laboratory studies, whilst showing clearly how
scientific findings come to energise a range of identity projects and
collectives. Elizabeth Fein in her chapter, ‘Innocent machines: Asperger’s
syndrome and the neurostructural self’, demonstrates how similar research
gains traction within educational settings. Elaborating on the work of
Nikolas Rose (2007), she argues persuasively that a new model of the human
is being enacted: the neurostructural self. Sara Shostak, Miranda Waggoner,
and Kelly Joyce concentrate on the ways in which cultural narratives and
societal norms impact upon the work involved in neurologic technoscience.
Shostak and Waggoner, in ‘Narration and neuroscience: encountering the
social on the ‘‘last frontier of medicine’’’, clarify that social interactions – and
their skilled performance – are essential to the constitution of neuroscientific
knowledge. In ‘On the assembly line: neuroimaging production in clinical
practice’, Kelly Joyce moves away from the laboratory and enters the clinic,
where she draws on her ethnographic research to reveal the industrial idiom
which pervades and structures neuroimaging work. Sky Gross remains firmly
in the hospital in her chapter, ‘A stone in a spaghetti bowl: the biological and
metaphorical brain in neuro-oncology’. Here, she examines the metaphors
employed by patients and professionals in a neuro-oncology clinic in Israel,
and reflects on the role they play in building subjectivities.
Part II, Health, Illness and Enhancement, attends closely to the extent to
which neuroscience is reshaping ideas about normality and pathology. Ilpo
Helén is concerned with the ways that discourse on depression in Finland has
been contoured through developments in neuroscience. In ‘Is depression a
brain disorder? Neuroscience in mental health care’, he finds through close
empirical study of Finnish scientific articles, compilation books, clinical
protocols and the like that – contrary to what many scholars assume –
neuroscience is somewhat marginal in clinical discourse and practice. In her
chapter, ‘‘‘We haven’t sliced open anyone’s brain yet’’: neuroscience,
embodiment and the governance of addiction’, Julie Netherland attends to
the mechanisms by which neuroscientific technologies have begun to change
the ways in which we understand, respond to, and treat drug addiction.
Through her analysis of the scientific literature and qualitative interviews with
people being treated for addiction with buprenorphine in the United States,
Netherland shows that neuroscience further blurs the already fuzzy boundary
between addiction as a medical and moral pathology and acts as a resource
with which individuals can reflexively engage in order to understand
themselves and their ‘treatment’. Baptiste Moutaud is likewise concerned
with issues of agency and identity. In his chapter, ‘Are we receptive to
xx INTRODUCTION: NEUROSCIENCE, IDENTITY AND SOCIETY

naturalistic explanatory models of our disease experience? Applications of

deep brain stimulation to obsessive compulsive disorders and Parkinson’s
disease’, Moutaud explores how neurotechnologies imply particular models
of pathology that interact with patient experience to constitute particular
models of personhood. Last, Catherine Coveney engages with one of the key
issues in neuroethics today: the therapy/enhancement distinction. Through
interviews with individuals in the United Kingdom about the (potential)
applications of drugs to enhance cognition, Covevey shows in ‘Cognitive
enhancement? Exploring modafinil use in context’ that understandings of
medical authority and appropriate work-place behaviour play important
roles in defining the meaning of ‘normal’ bodies – and, hence, of the moral
acceptability of tools designed to reshape these.
In the final section, Part III, issues pertaining to Neuroscience, Theory and
Society are the primary focus. The opening chapter by Simon J. Williams,
Stephen Katz and Paul Martin, ‘Neuroscience and medicalisation: socio-
logical reflections on memory, medicine and the brain’, discusses the extent to
which a key conceptual framework in sociology – medicalisation – casts fresh
light on developments in neuroscience. At the same time, they reflect on how
the dynamics of neuroscience raise new challenges to medical sociologists that
may necessitate further theoretical innovation. Christian von Scheve extends
this theme in his chapter, ‘Sociology of neuroscience or neurosociology?’ Von
Scheve reviews a range of sociological approaches that may afford benefit to
social scientific analysts of the neurosciences, whilst reflexively exploring how
neuroscience itself might have utility in developing theory and research in
sociology. In their chapter, Jennell M. Johnson and Melissa M. Littlefield
examine how this form of interdisciplinarity has played out in other domains.
‘Lost and found in translation: popular neuroscience in the emerging
neurodisciplines’ explores what happens to neuroscientific knowledge when it
is translated into books of popular neuroscience, and what effects this process
has on the authority of claims made in emerging fields like ‘neuroeducation’
and ‘neurolaw’. In the final chapter, ‘Field of dreams: a social history
of neuroethics’, Erin C. Conrad and Raymond De Vries chart the growth
of ethical discussion on neuroscience. Applying insights from the sociology of
professions, they demonstrate clearly the strategies that neuroethicists have
employed to develop their field and bid for professional legitimacy – in the
process, making enemies of some more traditional bioethicists, and
influencing scientific and public debates about the implications of neurologic
technoscience.
Together, these chapters represent an exciting cross-section of the
innovative work being carried out in the social studies of the neurosciences.
Introduction: Neuroscience, Identity and Society xxi

It is our intention that the stimulating and provocative analyses contained

herein will further energise scholarship in this important area. If it is indeed
the case that the brain is everywhere then sociologists are enjoined to look
more closely at it, and we hope that the sophisticated analyses contained
within these pages will provide a valuable theoretical resource to do just that.

REFERENCES
Amara, S. G., Grillner, S., Insel, T., Nutt, D., & Tsumoto, T. (2011). Neuroscience in recession?
Nature Reviews Neuroscience, 12(5), 297–302.
Beaulieu, A. (2004). From brainbank to databank: The informational turn in the study of the brain’.
Studies in History and Philosophy of Biological and Biomedical Sciences, 35(2), 367–390.
Bone, J. D. (2010). Irrational capitalism: The social map, neoliberalism and the demoderniza-
tion of the West. Critical Sociology, 36(5), 717–740.
Brosnan, C. (2011). The sociology of neuroethics: Expectational discourses and the rise of a new
discipline. Sociology Compass, 5(4), 287–297.
Cullen, J., & Cohn, S. (2006). Making sense of mediated information: Empowerment and
dependency. In: A. Webster (Ed.), New technologies in health care: Challenge, change and
innovation (pp. 112–130). Basingstoke: Palgrave.
Franks, D. D. (2010). Neurosociology: The nexus between neuroscience and social psychology.
New York, NY: Springer.
Hacking, I. (2006). The Cartesian body. BioSocieties, 1(1), 13–15.
Hines, J. Z., Lurie, P., Yu, E., & Wolfe, S. (2010). Left to their own devices: Breakdowns in
United States medical device premarket review. PLoS Med, 7(7). e1000280. doi:10.1371/
journal.pmed.1000280
Jasanoff, S., & Kim, S-H. (2009). Containing the atom: Sociotechnical imaginaries and nuclear
power in the United States and South Korea. Minerva, 47(2), 119–146.
Joyce, K. (2008). Magnetic appeal: MRI and the myth of transparency. Ithaca, NY: Cornell
University Press.
Karp, D. A. (2006). Is it me or my meds? Living with antidepressants. Cambridge: Harvard
University Press.
Keating, P., & Cambrosio, A. (2003). Biomedical platforms: Realigning the normal and the
pathological in late-twentieth-century medicine. Cambridge, MA: MIT Press.
Littlefield, M. (2009). Constructing the organ of deceit: The rhetoric of fMRI and brain
fingerprinting in post-9/11 America. Science, Technology and Human Values, 34(3), 365–392.
Lock, M. (in press). Dementia entanglements in a postgenomic era. Science, Technology and
Human Values.
Merkx, F., Gurney, T., van de Besselaar, P., & van Kooten, R. (2007). The development of
transdisciplinary learning science: Promise or practice. Den Haag: Rathenau Institute.
Nadesan, M. H. (2005). Constructing autism: Unraveling the ‘truth’ and understanding the social.
New York, NY: Routledge.
OECD. (2007). Understanding the brain: The birth of a learning science. Paris: OECD.
Ortega, F. (2009). The cerebral subject and the challenge of neurodiversity. BioSocieties, 4(4),
425–445.
xxii INTRODUCTION: NEUROSCIENCE, IDENTITY AND SOCIETY

Petryna, A. (2004). Biological citizenship: The science and politics of chernobyl-exposed

populations. Osiris, 19(2), 250–265.
Pickersgill, M. (2009). Between soma and society: Neuroscience and the ontology of
psychopathy. BioSocieties, 4(1), 45–60.
Pickersgill, M. (2010). From psyche to soma? Changing accounts of antisocial personality
disorders in the American Journal of Psychiatry. History of Psychiatry, 21(3), 294–311.
Pickersgill, M. (2011a). Ordering disorder: Knowledge production and uncertainty in
neuroscience research’. Science as Culture, 20(1), 71–87.
Pickersgill, M. (2011b). ‘Promising’ therapies: Neuroscience, clinical practice, and the treatment
of psychopathy. Sociology of Health and Illness, 33(3), 448–464.
Pickersgill, M. (2011c). Connecting neuroscience and law: Anticipatory discourse and the role
of sociotechnical imaginaries. New Genetics and Society, 30(1), 27–40.
Pickersgill, M., Cunningham-Burley, S., & Martin, P. (2011). Constituting neurologic subjects:
Neuroscience, subjectivity, and the mundane significance of the brain. Subjectivity, 4(3),
346–365.
Pitts-Taylor, V. (2010). The plastic brain: Neoliberalism and the neuronal self’. Health, 14(6),
635–652.
Rose, N. (2007). The politics of life itself: Biomedicine, power, and subjectivity in the twenty-first
century. Princeton, NJ; Woodstock: Princeton University Press.
Rose, N., & Novas, C. (2004). Biological citizenship. In: A. Ong & S. Collier (Eds), Global
assemblages: Technology, politics, and ethics as anthropological problems (pp. 439–463).
Malden, MA: Blackwell.
Rosenberg, C. (2007). Our present complaint: American medicine, then and now. Baltimore, MD:
The Johns Hopkins University Press.
Rubin, B. (2008). Therapeutic promise in the discourse of human embryonic stem cell research.
Science as Culture, 17(1), 13–27.
Rubin, B. (2009). Changing brains: The emergence of the field of adult neurogenesis.
BioSocieties, 4(4), 407–424.
Schull, N. D., & Zaloom, C. (2011). The shortsighted brain: Neuroeconomics and the
governance of choice in time. Social Studies of Science, 41(4), 515–538.
Vidal, F. (2009). Brainhood, anthropological figure of modernity. History of the Human
Sciences, 22(1), 5–36.
De Vries, R. (2007). Who will guard the guardians of neuroscience? Firing the neuroethical
imagination. EMBO Reports, 8, 1–5.
Walsh, C. (2011). Youth justice and neuroscience: A dual-use dilemma. British Journal of
Criminology, 51(1), 21–39.
Williams, S. (2006). Medical sociology and the biological body: Where are we now and where
do we go from here? Health, 10(1), 5–30.
van Keulen, I., Schuijff, M., & van Zoest, T. (2011). European governance and regulation of
neurodevices: The case of deep brain stimulation, EEG neurofeedback and transcranial
magnetic stimulation. Brussels: STOA.

Martyn Pickersgill
Ira van Keulen
Editors
 PART I
NEUROSCIENCE AS CULTURE
A CHILD SURROUNDS THIS BRAIN:
THE FUTURE OF NEUROLOGICAL
DIFFERENCE ACCORDING TO
SCIENTISTS, PARENTS AND
DIAGNOSED YOUNG ADULTS

Rayna Rapp

ABSTRACT
This chapter interrogates notions of the child and her brain as configured
in the laboratory of pediatric neuroscientists, and by parents (over-
whelmingly: mothers) of children classified for special education services
on the basis of their varied learning capacities and incapacities. Data
are drawn from my current New York-based study in a laboratory
conducting fMRI research on resting-state differences amongst controls
and children variously diagnosed with attention deficit hyper-activity
disorder (ADHD), learning disabilities, autism and Tourette syndrome.
Parents of children with those same diagnoses struggle with the strengths
as well as the school-based weaknesses of their children, and in interviews
they picture their children’s brains quite differently than do the scientists.
Young adult activists who grew up with the diagnoses of ADHD and
learning disabilities appropriate lab-based descriptions of neurological
difference to their own purposes, claiming a positive identity for

Sociological Reflections on the Neurosciences

Advances in Medical Sociology, Volume 13, 3–26
Copyright r 2011 by Emerald Group Publishing Limited
All rights of reproduction in any form reserved
ISSN: 1057-6290/doi:10.1108/S1057-6290(2011)0000013005
3
4 RAYNA RAPP

themselves. At stake in the space between these diverse perspectives on

childhood difference is the future of human developmental variability as it
comes under biomedical research and regulation.

The greatest dogma of neuroscience for the last 100 years (has been) the belief that
particular parts of the brain were very highly specialized for a particular function y
that’s not quite what goes on. There is more of a neuronal democracy. Neurons all over
the brain are voting, albeit in different ways, to perform a particular behavior, to
generate a particular behaviory. That’s what the brain does. The brain is about the
future. It plans the future of our motion and during that window, half a second or so, we
discovered in the last 10 years that we could record these electrical signalsy

(Miguel Nicolelis, neuroscientist, DRshow.org radio interview March 15, 2011, accessed
on March 18, 2011)

ENTERING NEUROSCIENCE

At the entrance to the Neuro-Imaging Institute (NII, a pseudonym), a

university guard stands at the door, checking IDs and the ‘‘guest list’’ of
volunteers who will participate in the day’s experiments. This entry space is
shared with several other departments and institutes, and as a public space,
it is considered Zone One of the Institute, interfacing with the external
world. The Institute is housed in a nondescript academic building, but its
expensive equipment is secured with considerable technology behind locked
doors in Zones Two, Three and Four, as the researcher or research subject
discovers in making her way deeper into the facility. The functional
magnetic resonance imaging (fMRI) machine that produces brain scans sits
at the centre of a web of protective technology in the innermost area, Zone
Four: there, it runs 24 hours each day. All equipment is wired for rapid shut-
down to ensure the safety of participants in case of an emergency or the
quench/sudden loss of the powerful magnetic field of the giant Siemens 3T
scanner at its core. Researchers and the manager of the NII have assured me
that no such emergencies have ever occurred, although the occasional
research subject has grown uncomfortable or even panicky while undergoing
brain scans. Then, the equipment is paused to renegotiate or remove the
person expressing any form of distress. But it has never had to be turned off.
Behind its locked door, the Institute is divided into three additional zones.
Everyone enters through Zone Two, a small waiting room painted
institutional beige on whose couches and chairs research assistants (RAs)
conduct intake interviews, check paperwork and read an age-appropriate
A Child Surrounds This Brain 5

picture book, Getting Brain Pictures with an fMRI Scan, to the children who
will serve as their research subjects. After double-checking the all-important
consent forms and insuring that parents or other caretakers understand the
timing of the experiments, child subjects enter zone Three in the company of
the RAs behind a closed door, leaving their adults behind. A newcomer to
the zone will be struck by its computerised buzz: seven screens are
continually active, the room is full of blinking computer consoles and a
printer, multiple phones and swivel chairs contribute to its high action
appearance. So, too, does the full wall’s length window separating Zones
Three and Four that enables researchers to observe subjects in the magnet,
talking with them through headphones that connect the chambers. Large
signage by doors and switch panels indicates emergency magnet stop
equipment and other safety regulations.
In Zone Three, RAs wand the child, airport style, to ensure that no one
carries so much as a penny’s worth of metal on their person before they are
transferred into the magnet. Small metal objects like earrings or pens can
become dangerous projectiles when brought into the magnet room, and all
magnetically coded objects like bank and credit cards must be stored
outside, as they will be erased (see Joyce, Chapter 4, this volume, for the
management of metal within clinical imaging settings). In Zone Three,
bathroom checks and pregnancy tests for those young girls old enough to
require them are also routinely discussed. Finally, two RAs walk the child
into Zone Four, the scanning room, where the bed of the fMRI/magnet is
already a familiar sight: potential subjects have taken a practice fMRI at the
lab’s uptown office, read the Brain Pictures booklet a moment ago and
observed the empty room dominated by this large piece of equipment
through the wall-length window as they tarried in Zone Three for final
preparations.
Once inside Zone Four, two RAs fit the child into the magnet, reminding
her of the loud noises, computer screens and various states and tasks the
subject will be asked to perform during the scanning of her brain. Here, she
is fitted with noise-abating earplugs and headphones for soundproofing/
communication; a hand-held squeeze ball ‘‘panic button’’; and blankets to
mitigate the room’s low temperature. The child is then fitted into the coil
helmet enabling the magnet to record her brain activity, and lying on her
back, mechanically lifted up and into the magnet which will surround her
head for the next 50–60 minutes.
The RAs double check the preparations and then leave Zone Four,
talking continually to the child, finding out what video she might like to
watch during ‘‘down time’’ in the magnet, checking on comfort levels, and
6 RAYNA RAPP

offering continual words of encouragement and praise. Data that flow from
the magnet are monitored on seven screens in Zone Three by researchers.
One displays an overview of the subject’s brain to check positioning; a
second screen is divided into quadrants where movement can be monitored
as the BOLD (blood oxygen level dependent) fMRI and diffusion tensor
imaging (DTI) MRI programs capture both brain function and structure.
There is a screen displaying the child’s selected video of Sponge Bob, Planet
Earth, or a Simpsons’ episode (by far the most favoured); other monitors
show breath/pulse monitoring; an eye tracker; and a screen on which files,
forms and calendars can be accessed to check and revise subject availability,
and schedule changes can be made. When the scans have been run, the child
is taken out of the machine, praised and asked to sign a receipt for payment,
which varies between $55 and $75 depending on the length of the study. In
addition to her money, the child is given one or two printed ‘‘pictures’’ of
her brain, and often these are of the greatest interest. The child has
completed the experiment, and information collected on the computers from
her brain is sent to the lab’s uptown offices, where it will be continually
sorted and processed.
Later in lab meetings, some of these children’s scans will be reported as
failures while others will count as partial or full successes, depending on how
still the subject was able to lie, and whether or not the entire length of the
scanning protocol was achieved. This evaluation is linked to the continual
activity that occurs in Zone Three while the scanning is in progress, where
RAs and post-docs qualified to run the scanner talk the child through the
noisy and disciplined process of lying still, eyes open, as resting state
connectivity (RSC) signals from her brain are recorded. This work is
occasionally interrupted as a subject is repositioned or asked to lie ‘‘still as a
mouse’’ so that a clearer image can be obtained.
On observation days, I sit with the RAs in Zone Three, having introduced
myself to parents and kids in the waiting room, assuring them I’m only there
to watch the scientists at work. Two preparation sessions have certified me
as a safety-trained observer in the Institute, with entry privileges during
business hours. But I would need to undergo an apprenticeship in scanning
by the facility manager – completing supervised scans and considerable
testing with annual recertification – before I would qualify as a machine
operator, in which case I’d have my ID card coded for longer periods of
entry. As many scans on children are conducted beyond business hours and
over weekends when they can most easily be brought to the Institute, my
low-coded status means I am frequently calling into the staff on the phone at
the entrance to Zone Two, requesting entry through its locked doors.
A Child Surrounds This Brain 7

Needless to say, members of the lab team have been more-than-gracious

in welcoming my arrival, my questions, and my observations. It doesn’t hurt
that I am the mother of a college-aged son who has had the diagnosis of
dyslexia since the age of six. Dyslexia is one of the conditions this lab is
tracking, and many researchers are quite interested in hearing my ‘‘real
world’’ stories of interviewing other families that have a child with a
diagnosis and an individual educational plan (IEP) – the federally mandated
legal passport that is issued each year by the local school district entitling its
student-bearer to specified forms of remediation and accommodation.
Imagining my son’s future also transformed my anthropological curiosity,
opening a window on the human brain and the negotiations now ongoing
in science, medicine, education, the law, media, and amongst families
concerning the reality of what movement activists increasingly label as
‘‘neurodiversity’’ to imply a form of human difference rather than simply
deficit (cf. Ortega, 2009).

MAKING KNOWLEDGE

The data that are collected at NII must, of course, be constructed and
interpreted by members of L-CAN, the Laboratory for Child and
Adolescent Neuroscience, whose research I am tracking. L-CAN’s director
and his circulating pool of high-powered international post-docs, research-
ers, and doctoral students, as well as predominantly North American RAs
and undergraduate interns, are well-organised to investigate a series of
childhood psychiatric conditions. While most famous for its studies of
attention deficit hyper-activity disorder (ADHD and its non-hyperactive
variant, ADD), L-CAN is also pursuing funded research on childhood
conditions as diverse as dyslexia, pervasive developmental disorder/autism,
Tourette’s, and epilepsy, recruiting children with such diagnoses and
comparing their brain scans with those of healthy controls (HC, in the
language of grants).
Scholarly outpouring of analyses using fMRI to collect ‘‘real time’’ images
of many forms of brain activity has rapidly accelerated in the last decade, as
the expensive machines that enable its collection have become more
widespread. The work of L-CAN should be viewed in the context of ‘‘the
rise of neuro-everything’’, in the words of historian of science Fernando Vidal
(2011). Projects investigating the impact of advertising, truth and ethics in
criminology, neuro-responses to varied kinds of music, and of course highly
biomedicalised studies of language impairment, dementia, and pathologies of
8 RAYNA RAPP

personality as benign as ‘shyness’ and as potentially lethal as profound

depression have all been subject to recent fMRI scrutiny. The eclipse of
psychodynamic explanations of human variation and suffering in favour of
brain-oriented hyper-materialist explorations has been the subject of much
commentary, especially in the US case (e.g., Luhrmann, 2000; Choudhury,
Nagel, & Slaby, 2009; Ortega, 2009; Weisberg, Keil, Goodstein, Rawson, &
Gray, 2008).
Among the many biomedical research foci that have been boosted into
high gear by the increasing availability of fMRI technology is ADHD – the
most widely-diagnosed form of childhood neural impairment, estimated to
affect 7–10% of school-aged children in the United States (Centers for
Disease Control, 2011). Magnet research has predominantly focused on
frontal regions of subjects’ brains: the prefrontal cortex, the supplementary
motor areas, and regions of the parietal cortex. Experimental conditions
usually involve selected tasks presumed to represent ‘‘real life’’ demands as
these areas are imaged; for example, in game-playing or word and number
recall. These regions are known to involve executive function, memory, and
attentional focus – all initially localised in animal as well as human studies
to frontal regions of the mammalian brain. Subjects with ADHD have been
shown to have hypo-activity and lessened cortical brain volume in these
areas when compared to healthy controls, and this is presumed to account
for their slower reaction time and lapses in attention while performing tasks.
Yet attempts to pinpoint the actual connective neural networks that account
for focal lapses, slow response times, and other differences of ADHD are
generally regarded as having yielded weak results, at best.
The director of L-CAN has made a substantial intervention into
neuroscientific discourse about ADHD, arguing that other areas of the
brain – especially the understudied precuneus region located in the back of
the brain – are involved in neural networks that were not previously
appreciated as being directly involved in regulating attention and related
phenomena. He posits that the brains of children and adults with ADHD
are less able to negotiate the complex interplay between default-mode
network regions and frontal-parietal executive control regions. Failure to
suppress such default mode networks is hypothesised to affect attentional
focus, causing variable response time in tasks – a well-documented sign of
ADHD. Such interference can best be shown, measured, and correlated by
focusing on what is deemed resting state functional connectivity (RSFC),
which is based on patterns of synchrony in spontaneous signals across brain
regions. Subjects lie very still without task or video prompts, and scientists
map and measure relationships that allow the identification of the brain’s
A Child Surrounds This Brain 9

default-mode network and other so-called resting state networks. RSFC

across brain regions is presumed to represent a pre-social or a-social map of
spontaneous connection, overlooked by the more obvious focus on task-
oriented brain regions which have been the object of study in most prior
research.
At the present time, virtually all brain imaging hours, data analysis,
conference participation, and publications of the lab are devoted to analysing
this more dispersed view of how children’s brains actually function. We might
interpret this emergent model as an instance of the ‘‘neural democracy’’
described by Miguel Nicolelis in the opening quotation. To continue his
metaphor, different brain regions ‘‘vote’’ to produce various split-second
differences in behaviour, achieving a kind of ‘‘compromise consensus’’ across
their sectoral diversity. Yet at present, the search for RSC involving networks
across multiple brain regions is in its infancy, still linked to a set of contested
indicators. ‘‘The one consistent thing about ADHD is that it’s inconsistent’’,
famously insists the MD/PhD associate laboratory director, quoting L-
CAN’s MD team head. ‘‘Folks used to think they could explain brain
connections in the dorsal anterior cingulate cortex (frontal region, a locus of
attentional control). But now we’re showing that low-amplitude waves in the
precuneus (back region) are anti-correlated with frontal action, they get in its
way, and that’s where the action is’’. In other words, L-CAN has shifted the
focus of research across regions of the brain, looking at their relations in
resting state in ADHD brains, when varied baseline connections are
hypothesised to interfere with task-directed actions that occur in frontal,
better-studied, parts of the brain. Laboratory publications characterise
different neurological impairments in terms of this ‘‘neural democracy’’ and
its collaboration/competition amongst brain regions.
The presumed benefits of this research will include a more accurate
description of childhood neurological differences in terms of subtle,
dispersed network connectivity, and a future ability to pinpoint neural
networks that may become targets of biobehavioural or pharmaceutical
intervention at a future date. In the lab, the brain is thus about the future in
a doubled sense. First, in those with the condition of interest, it is posited to
be regionally interactive with split-second future consequences that disrupt
and transform intentions in one area derailed by subtle connectivity to
another. And second, it is widely hoped that knowledge about such
connectivity may someday provide new future possibilities for intervention
(cf. Moreira & Palladino, 2005). As the head of a major New York
Psychiatry Department in a public hospital noted for its research capacity
puts it, ‘‘Translational neuroscience of psychiatric illness is the future’’.
10 RAYNA RAPP

MAKING UP PEOPLE?

The future of such translational research is built through practical and

highly disciplined activity: recruiting a research subject population is hard
work. To amass adequate test subjects – both those affected with specific
diagnoses and healthy controls to be matched against them – there is an
intense choreography that links the scientists and their shifting army of
assembled children. Youngsters are difficult subjects to recruit; my field
notes at lab meetings are full of outreach strategies aimed at reaching
potential subjects through clinics, educational programs, paid advertise-
ments, and the ever-present Craigslist (an on-line swap and advertisement
site very popular with young Americans). Financial incentives are offered,
but these must be modest enough to pass Institutional Review Board (IRB;
a federally mandated ethics committee) standards of non-coercion while
alluring enough to interest members of the target audience.
Different studies require children with diverse diagnoses, and various ages
ranging, for example, from toddlers with pervasive developmental disorder
to middle schoolers (age 8–12 years) with dyslexia. Samples also must be
matched for sex and handedness, two variables that have long been
correlated with various cognitive diagnoses. Some children may be barred
from one study, but eligible for another and a birthday or a slightly tweaked
medical diagnosis may transform their situation: ‘‘That kid really wants to
make money, too bad he’s too old to use as a control for our epilepsy
protocol’’, one scanner commented. Six months ago, before his latest
birthday, the child would have qualified for that particular study.
Sometimes, data drawn from a specific research subject can be repurposed
for use in a second study; at other times, successful subjects in one study are
willing to return for additional scans in another. Different differences are
continually being highlighted and engaged as the lab team recruits children
with brains-of-interest: subjects’ unique or overlapping diagnoses or control
status in one or more studies, and the ages that may make them eligible for
one study this season, and another one next, are all under continual
negotiation.
The management of this ongoing and continuously recomposing subject
population requires the work of a lab administrator and several RAs. It also
involves cyber and geographical connections that criss-cross the greater
metropolitan area; ADHD kids, for example, may be drawn from local
clinics and other nearby after-school programs. So too may be controls: one
woman I spoke with at the lab regularly accompanied her nine-year-old
granddaughter who had served as a control on several studies. The child
A Child Surrounds This Brain 11

earned 55 dollars that day – quite a bit of money for someone who appeared
to be from a modest background, as she lived in a nearby low-income
housing project. Her grandmother was particularly interested in teaching
her grandchild to save:

She’s so proud of her pictures, she takes her brain everywhere. She’s making money, it’s
her own money. She can do anything, well, almost anything, she wants with it. But some
of it has to get spent on going to college. She’ll be allowed to treat herself to lunch, but
really, the money has to go to some good purpose.

When I queried the staff about class differences in child enrolment, one
said, ‘‘we recognise that all parents want to get the best for their children.
Unfortunately, lower class parents don’t pursue this option so much’’.
Recruiters and scanners are quite sympathetic to the diversity of children
and their families; but they do not seem to be aware of recent work in social
psychology ACE (adverse childhood events) or epigenetics (Jablonka &
Lamb, 2005) that suggest the profound social impact of stressful life factors
to which kids growing up in poverty are much more likely to be exposed (see
Tough, 2011, for popular interpretation). Such contemporary research
might complicate researchers’ understandings of which populations of
children exhibit their diagnoses of interest, or how chronologies of early
exposure to adversity might then affect multiple conditions and the severity
of what are later diagnosed as neurological conditions.
The laboratory staff understand that children with a relevant diagnosis
are often entered into studies because some parents can imagine future
benefits of research on their child’s condition. The mother of a four-year old
in an epilepsy study, for example, told me that she was grateful for the many
controls who served in that research since their participation bolstered her
hope that someday soon there would be better medicines for her daughter’s
seizures. Parents in a dyslexia study uniformly expressed enthusiasm and
support for research into brain differences involved with this condition:
‘‘The bottom line is, we’ll never get to the bottom of this without
research y. They can’t get funded for these studies unless folks like us
volunteer’’, one said.
Another mother told me, ‘‘It’s so interesting, why wouldn’t we do this?
The more you learn about the brain, what’s going on with them, the brain is
so interesting, it’s always good to educate yourself, to know more about
yourself’’. Despite her positive and universalising expressions, the same
mother had said while looking at her daughter’s brain scans a few moments
earlier, ‘‘it’s nothing special, it just looks like every other brain’’. It is hard to
reconcile global expectations with the inconclusive specificity of the scans
12 RAYNA RAPP

their children take home. The real story lies elsewhere, from the scientists’
point of view. Yet the highly experimental work of the laboratory and
parent expectations in some groups with high scientific literacy and
biomedical expectations may be contributing to the anticipation that studies
like these will directly benefit their children and more general populations
long before clinical implications are warranted.
This existential gap between parental expectations of science and the
opacity of what their particular child’s scans will be interpreted to illustrate
presents an ongoing conundrum. The lab staff is particularly aware of this
chasm: ‘‘You should hear our phone screens, ‘can I take the scan to my
doctor?’ parents ask me. Really. Sure, you can take ‘em but he knows less
than we do’’. Another told me, ‘‘This is not diagnostic, but people think if
you look at part of the brain you can say what’s wrong with it. It’s hard for
them to understand that isn’t what we’re doing’’.
One mother of two dyslexics who were participating in the same study
expressed her frustration to a scanner: ‘‘So what can you tell me from these
pictures? Nothing! Unfortunately, I’m not a neuro-radiologist. OK, so I’ll
just get a textbook and interpret it myself’’. Another mother, looking at a
side view scan of her child says, ‘‘You can tell it’s him by the nose. But
what’s in his brain?’’ Again, the assumption of future abstract benefit is
continually undercut by the disappointment of expectations when a scan is
just a scan and does not reveal anything immediate about the child’s
diagnosis (cf. Pickersgill, Martin, & Cunningham-Burley, 2011).
At the same time, a shift across this existential gap also provides a
valuable collaborative benefit for parents: a theory of neurodiversity takes
the blame for a child’s school or social failure off the parents (over-
whelmingly, the mothers). The materiality of brain scans potentially
demonstrates a difference which is far removed from Bruno Bettelheim’s
(1967) classic ‘‘refrigerator mother’’ theory of autism, or popular blame of
ADHD on ‘‘too much television, sugar consumption, and other permissive
parenting behaviours’’, as is widely believed in the United States. If the
somatic truth of a child’s school problems is lodged in specific brain regions
and dysfunctional connections, the materiality of the condition can be
dislodged from putative parental shortcomings, enabling a parent or teacher
to accept childhood differences with potentially less frustration and more
compassion. The future of brain studies may thus seem comforting to some
parents.
Parents are not the only ones to project future efficacy into present
imaging. Following L-CAN members to the American Association of Child
and Adolescent Psychiatry meetings in 2010, I was struck by the frequency
A Child Surrounds This Brain 13

of questions raised to poster-presenters: ‘‘How much will it cost to get my

patient a scan, show her where in the brain her depression is?’’ asked one
clinician. Another said, ‘‘I can see you’re really zeroing in on ADHD, that’s
great. When will you start testing new meds?’’ Such questions imply that
there was conclusive mapping of the widespread condition that could now
be subject to what physicians imagined to be more efficacious pharmaceu-
tical regimes. In my field notes taken at the meetings, I have scribbled down,

the clinicians only want to know when the fMRI machines will be ready for diagnosis;
the researchers only want to know what comes next. There is no conceptual space
between the tiny steps our lab describes toward using resting state connectivity to search
carefully for areas of the brain linked by neural networks to other areas and specific
diagnoses and healthy controls (both adult and kid) y and what the audience wants.
Everything is collapsed, they want the answers NOW.

Lab members were unfailingly polite in answering the questions posed.

But in private conversations, they were also astonished at how little
practicing clinicians – often from prestigious teaching institutions – seemed
to understand about the difference between exploratory research and
translational findings.
This same existential gap is regularly crossed by scan operators who
interface with child subjects and their caretakers every day. Trying to
understand the difference between expectation and data collection, I asked
members of the lab whether they saw ‘external’ differences in children
diagnosed with ‘internal’ differences, or controls. I was probing for these
scientists’ ideas about the relation of the structure of the brain to its
behavioural functions. But no matter how I framed the question, not one
member of the scanning staff ever pointed to significant direct brain-to-
behaviour differences beyond those of age:

with the toddlers, we know they may not go to sleep and that’s the end of our scan if they
squirm. An older kid, even a kid with ADHD can be very nervous, you just calm them
down, tell them to lie still. Eventually, they do. With the dyslexic ones, we know they
may not be reading the social story [Getting Brain Pictures with an fMRI Scan, or the
subtitles in the Simpsons]. But once you get ‘em into the magnet, it’s all the same.
Knowing what they have, it doesn’t bias our results, it just helps us better prepare them
for the scan.

In fact, many scanners commented on how cute they found the kids to be,
and one expressed amazement at their participation: ‘‘I think it’s bizarre
that parents let us scan their kids. I went into the fake scanner at the office
and freaked out, it’s so noisy. Now I have a little more sympathy for the
little kids who wriggle out’’.
14 RAYNA RAPP

Yet specific diagnosis – a key element for recruitment – may be mediated

through less obvious social factors that in turn may affect outcomes. A
recent dyslexia study, for example, successfully recruited its subjects through
the International Dyslexia Association; most of the families who signed up
through the organisation were drawn from the wealthier suburbs of
Westchester and Long Island. The scientist in charge of the investigation
was quite specific in her description of this population:

These parents are different than lots of the parents I see from the New York City. These
are very strict. Especially if they have dyslexia themselves, or have seen it in the family,
they know the value of education. If the mother’s brother has it, the mom limits sugar in
her son’s diet. [Parenthetically, all RAs comment on the lack of utility of dietary
interventions, but still speak approvingly of the parental discipline it involves]. All these
parents have given their children the best, they’ve all had remediation since they were
diagnosed, a tutor, a remedial reading teacher. We know the left angular gyrus is
deactivated in dyslexics, it can be reactivated after intensive remediation. So many of
them have had this tutoring advantage. Maybe it has already changed their reading. But
not their spelling. Even the good readers, they have trouble with spelling, so maybe that’s
another set of connections.

This researcher is aware of the conundrum this raises for resting state
functional connectivity studies: one could easily posit that long-term
interventions have already changed neural networks before the child is
enrolled. Therefore, she is suggesting that if their reading is already far from
a spontaneous ‘‘baseline’’, having been socially remediated, other aspects of
their dyslexia – notably, spelling – may still be amenable to differential
analysis via fMRI data collection. In several conversations with me, the
researcher underlined that the parents of these dyslexic students truly knew
the value of research and really wanted to participate: she had never seen
such quick and reliable enrolment in any prior study in which she had
participated; this was thanks to the collaboration with the International
Dyslexia Association. Yet, the IDA should be placed in its own specific
historical and social context. The world in which dyslexia was first
described, interventions developed, and families later organised around,
involves an explicitly activist context (Sleeter, 1987, reprinted 2010;
Ginsburg & Rapp, 2010). In other words, strategies for remediation linked
to science-friendly research projects already place these specific families
and their potential child dyslexic research subjects in a specific social
context which may well have affected the brain patterns which are then
being tested.
A Child Surrounds This Brain 15

CONSTRUCTING DATA

Because fMRI research is both scientifically ‘‘hot’’ and expensive to support,

many labs collaborate in pooling and exchanging data. Subject populations
are also made up through circulation and exchange. Current studies at
L-CAN, for example, have relatively small sample sizes which range from 20
to 120, and recruitment may be open for several years before these numbers
of volunteer subjects are achieved. The problem of sample size is widely
recognised: many prior fMRI studies cited in the literature have been built
through meta-analysis, combining data from multiple small studies. With
collaborative exchanges, samples can be enlarged, although scientists are
aware of methodological differences in data collection protocols that make
additions and comparisons a highly technical matter: ‘‘data always needs to
be massaged’’, fMRI scientists continually say, hence the status of the real is
under construction through these exchanges that build databases which are
at once collaborative and sometimes competitive.
Additionally, L-CAN’s director has taken the lead in establishing an
international consortium where brain images and the databases that
accompany them can be uploaded and analysed across at least four
continents. There may not, for example, be enough left-handed children of
both sexes between the ages of 6 and 10 with an autism diagnosis who can be
recruited to a specific study in lower Manhattan – but when compared to
databases derived from similar subjects enrolled in Europe, Latin America,
and Japan, findings may well become more statistically robust. Of course,
neuroscientists are acutely aware of different diagnostic and research
protocols that may affect results. Nonetheless, such collaborations aim to
harmonise research strategies, building global brain libraries: the subject of a
transnational and universal brain with potential variants of interest across
multiple geographical, institutional, diversely funded sites is constantly being
expanded in its make-up. Scientific collaborations have long constructed
‘‘globally defined fields of possibility’’ (Appadurai, 1996, p. 31); now, such
flows are attaching to brain data, smoothing out the differences across the
lumpiness of laboratory life in its diverse national contexts.
When scientists speak of ‘‘massaging data’’, they are referring to highly
technical processes that abstract statistical patterns from images and
measurements produced in the magnet. While the public – including
physicians – is now accustomed to colourful images of the human brain in
which various regions are dramatically pigmented to highlight working
areas and connections, these bear little relation to ‘‘snapshots’’ of an
16 RAYNA RAPP

individual brain in one particular moment in time. These images are

brilliant-hued composites of data compiled to emphasise the direction and
density of connections that researchers have painstakingly correlated in the
human brain.
The magnet collects data using several programs: blood oxygen level
dependence (BOLD) fMRI scans track direction and density of blood flow
(‘hemodynamism’) through regions of interest (ROI) in the brain to identify
potential functional networks of connectivity. The magnet picks up the ratio
of cerebral blood flow to oxygen use in an ROI as it shifts upward and
downward, suggesting which areas are relatively active in various states or
tasks. Although the signals are small and only measured relative to one
another, highly sophisticated statistical formulae can be applied to lift the
data out of its background: signal to noise ratio is created by interpreting
these electrical flows as signs of active, firing neurons whose direction and
connections can then be mapped.
DTI MRI, a complementary and newer technology, uses water-diffusion
to measure connectivity in the brain’s white matter in ROIs. White matter is
the name given to the nerve fibres or axons deep inside the brain which carry
messages across regions: buried at the core of ROIs, white matter used to be
hard to image, but DTI has recently made it accessible. In DTI, parameters
are established for measuring the rate of water diffusion and its direction in
each voxel (a three-dimensional pixel) into which the ROI is divided. Thus
the convoluted asymmetrical three-dimensional space of the brain can be
smoothed out and described as a map. The mathematics involved are highly
abstract: the properties of each voxel are acquired by measuring many
different gradients and orientations of water flow, then combined and
weighed. Regions of the brain are ‘‘seeded’’, which means that a computer
program is set to take measurements at standardised distances from one
another; the density of seeds is adjusted to sample size and the quantity/
quality of connections whose existence is being sought. Measurements
reflecting the directions of water diffusion within each voxel are recorded.
Using both BOLD and DTI, the function and structure (i.e., nerve fibres) of
brain regions can be calculated.
By comparing the relative strength and direction of these signals (the
‘signal to noise’ ratio), neuroscientists search for associations between brain
regions which are neurally networked. ‘‘Getting decent data, that’s what it’s
all about y we started an algorithm to get functional RSC reconstructed, it
leads to better SNR [signal to noise ratio]’’, as one lab scientist told me. His
data are highly abstract, provisional and negotiated, yet they are considered
exciting, too. But they exist in an expert space far removed from the public
A Child Surrounds This Brain 17

imagination of brain imaging: abstracted from standardised measurements

that are intended to smooth out and make comparable very subtle
differences in energy flows amongst brain regions which may correlate with
aspects of diagnostic behaviour differences, such images are highly
experimental. ‘‘Our data are made but they are not made up’’ as
anthropologists might put it (Roseberry, 1982). Thus the status of what is
real in brain imaging is constantly under statistically expert construction,
and there is a profound existential gap, I would argue, between
neuroscientists’ daily experimental processes and what many other publics –
including many clinicians, parents of affected children, and young adults
living under these diagnostic categories – anticipate. Nonetheless, brain
imaging has entered the collectively produced future imaginary.

DEVELOPING BRAINS

Brains regularly float out of the laboratory; they are tethered in the
narratives parents tell about their child’s diagnoses and struggles. When I
asked parents of children who carried a school-related diagnosis to describe
their child’s brain, the hybrid notions they produced were quite complex.
Often, their children’s brains were metaphorised through other pieces of
contemporary technology, as these interview excerpts demonstrate.
For example, a mother whose seven-year-old son has just been
re-diagnosed, adding paediatric bipolar disorder to his prior category of
Tourette’s, described his brain this way:

It’s all messed up, it’s very complex. I imagine in like a crowded desk-top of a computer,
you can’t find any files in there, although they’re all there. He’s a mess. He’s always in
trouble in school, his brain doesn’t work like the other kids. His brain is just different,
it’s like two giant things [Tourette’s and paediatric bipolar] are operating independently,
neither knows what the other is doing (they aren’t connected, the MD tells me), but they
both are getting in his way.

Likewise, an adult acquaintance who was only diagnosed with ADHD

after his own children received this label and its medication regime said,
‘‘I’m also HDTV, just like the kids, I only discovered it as an adult, it
explains a lot. There’s attention stuff all over my family, years ago they
didn’t go for this. I just figured out what to do to get through school, I was
always with the slow, dumb kids, my brain didn’t work, it didn’t help.
Learning music saved my life’’. And contemporary electronics provided his
humorous metaphor.
18 RAYNA RAPP

These individuals’ use of high-tech metaphors also resonates with an

ongoing public debate about whether early exposure to such platforms
transforms the brain through multi-tasking and other behavioural adapta-
tions that may encourage ADHD and what I here take to be ‘‘neuronal
democracy’’.1
The most self-reflexive interview I conducted took place with a medical
student, Rajid, who grew up between India and the United States. He had
recently been diagnosed with both learning disability (LD) and ADHD,
having spent his life in a high-achieving educational/familial context figuring
out ingenious, private strategies for his own accommodation in isolation,
without support. As our interview began, he pointed to his Sony voice
recorder saying, ‘‘This is pretty much my second brain’’. Rajid had taken a
break from medical school to work at L-CAN, where he was warmly
welcomed by the team. He viewed himself as the ‘‘wave of the future’’ in
medicine, struggling to make sense of neurodiversity among children and
young adults. Becoming a brain scientist was a goal that enabled him to
think more deeply about his own brain differences and deficits, searching for
biomedical explanations and interventions on behalf of many others:

ADHD, you know, it’s very controversial. Dyslexic, it’s a little bit easier for people to
swallow. There’s a neurological, I use the word neurological instead of psychiatric,
there’s a neurological kind of difference y We’re in a kind of in [an] Adam Smith society
where we specialise in, you know, this is how things work and I understand because
that’s how society functions as a whole, so if I had to pick one kind of facet it would
definitely be medicine because I feel it is the most bang for the buck instead of fixing this
and that y I think we have a certain brain infrastructure and we figure out the best way
to utilise that infrastructure. And you know, we can make little amendments. Can we
completely change your brain, no probably not y I find out what my weaknesses are
and I make them my strengths. That is precisely what makes me, will make me great at
this and what’s gonna be the thing that gives me my confidence.

Many mothers likewise adopted the language of neurology and

neuroscience to justify their own perceptions of a child’s worth, despite
school struggles and stigmas. As one mother put it in describing her
daughter’s school-based gaps:

Things go into her brain, it just happens in a completely different way. And she’s got
some really, really strong talents and abilities that a lot of people don’t have because of
the way that her brain is wired. But there’s no question that y she has trouble reading.
She has that problem of coming up with the right word sometimes. You know, it’s a
processing thing. You know, it’s the way her brain processes information is very
different and she can come across as not very bright. And then when they see what she
can do y they’re always saying, ‘‘Oh she’s so smart.’’
A Child Surrounds This Brain 19

Some parents were already brain-focused in their professional work

before their child with a diagnosis reoriented and deepened it: Bridget
Keene, a LD specialist, described her research and clinical work thus:

And as we know, most LD kids don’t have one thing wrong with them. It’s usually
constellation misery y So we don’t know everything neurobiologically about why, but
we do know that we can find common constellations that need treatment y And we also
know that certain symptoms go with different diagnoses, you know. Sometimes it could
be ADHD related. Sometimes it could be addiction related. Sometimes it can be
depression related y It’s really complicated. So let’s just take these kids to school, that
have these issues, right? So: I did this work for seventeen years, diagnosing, researching,
providing tutoring and then I got pregnant, and I basically had a kid who looked like my
research. And I don’t know how this happens in the world y Everybody has a personal
connection.

These mothers are describing their children as ‘‘cerebral subjects’’ whose

‘‘Beliefs, desires, behavior and emotions are addressed in wholly cerebral, or
rather neurochemical terms, and their social and cultural effects are also
attributed to the brain’’ (Ortega, 2009, p. 426). Once again, such brain-
centred explanations that appropriate the concept of neurodiversity from
social movements predominantly mounted by young adults diagnosed with
autism may offer comfort to those who struggle with various forms of
childhood difference (see also the chapter by Elizabeth N. Fein, this
volume).
Some populations seem particularly open to brain-deficit explanations:
parents of adopted children, especially if they were adopted internationally,
widely believe that their kids are at considerable risk for disordered learning
and disrupted social skills. Several adoptive parents I interviewed produced
the number of ‘‘25% have learning issues’’, although there is no statistical
base that I could locate to verify or contextualise this popular conception.
But in six interviews with adoptive parents whose children hold diagnoses of
ADHD and LD, two spoke of the young women they imagined the birth
mothers to be: vulnerable to impulsive choices and mistaken social cues,
perhaps bearers of ADHD themselves. Some spoke about poverty and poor
maternal nutrition as contributing to brain differences in the children they
bore and relinquished. One described a popular psychological theory in
adoption circles known as ‘‘the lost highway’’: maternal voices heard by the
developing foetus in utero are thought to be abruptly replaced after birth by
language in another tongue, and this was imagined to impair language
learning in the infant’s traumatised brain. One adoptive mother said,
‘‘Look, we tend to be more middle-class than the young girls who are giving
up these babies. We’re on the look-out for anything that could go wrong,
20 RAYNA RAPP

and when it does, we have them tested right away. If there’s a brain
problem, we pick it up’’. Indeed, one mother moved the discussion away
from the brain and into the general environment, saying:
I have no idea why these kids have these things. I mean I could say it’s the polluted
environment y Our food is toxic. It’s all sprayed with chemicals. You know, I don’t
know. Why is it more? I have no idea. The way they think about education is different.
The pressures around education are different y

Of course, not all biological parents/adoptive parents think about their

children’s learning differences through this particular lens of the brain. One
mother of an internationally adopted son who had an IEP and
accommodations for part of his childhood described her son thus:
Look, Carlos is charming, very socially connected. And very lazy. It’s just in his
character not to work too hard in school. He doesn’t want to be singled out with labels,
and they never did him very much good, anyway. So I just have to stay on him to get the
homework done.

An African-American professional mother rejected the diagnosis of

ADHD given to her daughter who changed schools three times before she
was eight in search of what her parents viewed as appropriate acceptance:
A child this ebullient who can’t sit still is at grave risk of being labelled and medicated. The
Black community is very conservative about children’s behaviour, they just want her to
suppress all those impulses. And in predominantly white schools, everyone is looking
to her to be a role model. It’s not a fair demand to make on a child who is a little slower to
learn her social cues.

In this mother’s view, a child under social pressure was being over-
medicalised by what I might label as ‘brain-blame’.
Some mothers remain agnostic when asked about their children’s brains.
Maureen MacNamara, for example, offered a mixed kinship/diagnostic
narrative-a kind of ‘‘blended inheritance’’ of the social and biological (Lock,
Freeman, Sharples, & Lloyd, 2006). When asked about her son who was
diagnosed with an autism spectrum disorder, she opined:
I do think the rise in autism is from the children being diagnosed better. Back in the day,
I think that if you were high functioning like Asperger’s, you were like Speech and
Language Delayed or Language Delayed. I think if you were low functioning, you were
mentally retarded. And now I think they’re getting it better. Um, I don’t know where it
comes from. I don’t know if it has anything to do with the brain y According to my
daughter, I will tell you what she told me when Gregory was diagnosed. She was 9. She
informed me one night that it was her fault that her brother was autistic. I said, ‘‘Why is
it your fault that your brother is autistic?’’ She says, ‘‘Because when I was in your belly, I
took all the smarts. And I didn’t leave anything for Greggy.’’ I said, ‘‘Well, if you took
A Child Surrounds This Brain 21

all the smarts and Greggy took all that was left.’’ She said, ‘‘I know. I don’t know what’s
gonna be left for Kevin (the youngest, also with a diagnosis)’’.

Similarly, a high school student who had had an IEP and special
educational accommodations since being diagnosed on the autism spectrum
at the age of five mixed a brain and a kinship explanation of his concrete
differences:

I almost flunked chemistry and then I passed it. My teacher really helped me but mostly
it was my mom, she went on the computer and figured out chemistry for me. My brain
works different, I thought I got it but I didn’t. And then I did. You ought to see my
mom.

His mother, a strong advocate for her son’s self-esteem and services, fits
well into what we have elsewhere called ‘‘Moxie Moms’’ (Ginsburg & Rapp,
2010). The powerful mix of brain language with ‘‘the new kinship imaginary’’
linking advocate families with their diagnosed children, signals the rising
comfort and acceptance of the heterogeneity of the brain as a metaphor for
human difference.

EMERGENT EXPERTS

This hybrid usage of brain-as-diversity is particularly apparent in the words

of young adults who succeeded in getting through their public school years
with the benefits and burdens of IEP/special education labels. My fieldwork
includes participant-observation with Project Eye to Eye (PE2E), the first
national organisation by and for young adults who grew up with diagnoses
of ADHD/LD and IEPs. Having gone to college against considerable odds,
they now are organising chapters across the country, where members are
trained to mentor kids in local middle schools near their campuses with the
same diagnoses. College-age participants in PE2E provide a ‘Beyond
Normal Art Class’ as an after-school activity; the art room is conceived of as
an outreach towards self-acceptance and advocacy for the youngsters who
participate. The curriculum uses art projects to build trust across
LD/ADHD generations; young adult mentors use a theory of metacognition
to hasten self-awareness and confidence amongst their mentees. The young
adults who become cultural activists in the service of what they call a
‘‘special ed revolution’’ are thus a very thoughtful group. Their language
and classroom-based actions reveal neurodiversity as a user-friendly
mainstay of their self-awareness and strategies.
22 RAYNA RAPP

My interview with NYU’s chapter head began with her announcement

that ‘‘My brain is raging today and I don’t wanna take meds’’. She went on
to tell me the history of her continual re-diagnosis as dyslexic and
dysgraphic in a New England town, and the discouraging educational
experiences that had circuitously brought her to leadership in PE2E. Now,
after diagnosis of ADHD on top of her prior labels, she continues her story:
You can look at it and say that’s a compensation, that’s how my brain, its plasticity,
works. And that’s the science stuff y Where do we take the information that we learn
about people with different kinds of minds as all this science stuff comes out as, you know,
well autism is a good thing and ADHD is a good thing and all of these sort of childhood
disorders that end up being so well researched and have all this funding go into them y At
least [in] Eye To Eye we’re trying to build these communities and we’re looking at the
attributes and the really great things about having a different kind of mind y learning
about ourselves as human beings and the kind of the world that we’re in. y [In] This very
fast paced world where all of these different ideas are emerging together y you have to be
able to set yourself apart, you have to be able to think differently. And so what does that
say for these people who have been able to think differently for their entire lives and
haven’t put themselves into this little box of being just like everyone else and doing it in the
same time frame as everyone else does it? And in a globalised society how much is that
going to make you be better than the next guy? What’s gonna set you apart? Is it being
different in a quirky better way that’s gonna set you apart, or is it being the best of the
normal people that’s gonna make you who you are?

This young woman is raising activist aspirations and doubts about what I
have here labelled ‘neuronal democracy’. It is worth noting that her ideas
about the importance of accepting the potential creativity of differently-abled
brains are an instance of how scientific thinking diffuses far beyond the
laboratory findings noted at research centers like L-CAN. In appropriating
the idea of ‘neuronal democracy’, I point to the cultural distance between her
social valorisation of putative brain differences, and how this concept was
used to describe specific research findings by neuroscientists investigating
momentary processes of brain action in Miguel Nicolelis’ radio interview
which opens this chapter. By underling the distance between popular and
scientific usage, my argument suggests that the effects of laboratory research
and the metaphors used to describe them may serve expansive purposes in the
practices of those who see their subjectivity embedded in research findings.
Dave Flink and Marcus Soustras, respectively the Executive Director and
National Program Director of PE2E, expressed similar sentiments in one of
my earliest interviews with them:
We’re forced into labels. We need to embrace them, say, ‘I am dyslexic’. Cognitive
diversity is just the same as saying, ‘‘I’m Black’’ or ‘‘I’m tall’’, it’s just another physical
thing y When your label remains invisible, you’re in the closet, you can’t do your best.
A Child Surrounds This Brain 23

Your brain works better when you’ve got the accommodations you need y Our
weaknesses have a label but really good educators work with our strengths. Our
disabilities can be healed when we’re in an environment that accepts our neurodiversity,
works with us to put it to work.

Coming out as ‘‘being different, having a different brain’’ and using your
accommodations to succeed is central to the mission of PE2E. In the NYU
chapter to which I serve as mentor, three students with three different diagnoses
expressed similarly the importance of understanding neurodiversity. As one
said, ‘‘It’s a way to get excited about being different, now I know that my brain
just works differently, I pay attention to everything, that can be turned into a
good thing’’. They, too, are embracing a theory of neuronal democracy.
The summer that I attended PE2E’s Organizing Institute – a boot-camp/
celebration and intensive leadership training workshop that the group holds
annually on the campus of Brown University in Providence, Rhode Island –
this sense of comfort with psychiatric diagnoses, and the creativity of brain
differences presumed to underlie them, was quite visible. Below, I offer
excerpts of the discourses revolving around Executive Director David
Flink’s opening speech at the OI. I wish to highlight the practical and
ongoing embrace of diagnostic/neurodiversity paradigms that accompanied
his inspirational talk. Insider humour was manifest as Dave was surrounded
by activists cracking special ed brain jokes: ‘‘Pitch it quick I’ve got a short
attention span’’, called out one; ‘‘Don’t ramble off message, my brain can’t
follow’’ quipped another. After a workshop that participants were asked to
evaluate, Marcus Soustras, National Program Director, said, ‘‘I promise
this is the last survey all you dyslexics will have to fill out’’. And some wise-
cracker immediately yelled out, ‘‘Do I get time-and-a-half for this one?’’
As a participant-observer at the OI, I was struck by the materiality of
difference: boxes of squeeze toys were distributed everywhere in recognition
of the built-up physiological tensions that accompany long stretches of
sitting for this crowd; public announcements include stair-running breaks
and other highly physical suggestions for ‘‘letting off steam’’ among
ADHD-ers and Touretters at work. Once, I was asked to move to the back
of a large gym; the clicking noise of my computer note-taking was
distracting to some participants. The OI includes many informal but serious
long discussions of ‘‘meds’’, and their potential side effects. This population
embraces neurodiversity and its biomedical and educational accommoda-
tions as a potent strategy for building their personal and political futures.
They are not alone. Paul Yellin, a neurodevelopmental paediatrician at
NYU’s Langone School of Medicine and founder of the Yellin Center for
Mind, Brain and Education, pushes this idea of disability-as-diversity to its
24 RAYNA RAPP

logical limit: ‘‘I think everybody is potentially learning disabled. It depends

on what you’re trying to learn. I also think that nobody’s learning disabled.
I think that we have this huge false dichotomy – that we have typical
learners and learning disabled, and I think it’s really damaging’’. In these
parental, professional and young adult discourses, the materiality of brain
differences underlying diagnosis and remediation is embraced as the positive
wave of the future.
In these excerpts from their annual Organizing Institute where new
national chapters are formed and chapter leaders are trained, national
leaders Dave Flink and Marcus Soustras articulate a theory of differently-
abled brains and the role of neurodiversity in building a future without
prejudice towards cognitive disabilities and the people who carry them. Such
talk resonates with the ‘social model’ of dysfunction that disability activists,
within and beyond the academy, have so long fought recognition for
(Albrecht, Seelman, & Bury 2001). Here is a portion of Dave’s opening
speech at the conference:

I came here today from the future, I ripped through the space-time continuum to tell you
something. I’m gonna tell you about the future, I saw some awesome things. Disabilities
don’t exist in the future. Why? Because LDs don’t have the same meaning as they do for
us. Because they don’t affect us any more. Thirty years in the future, they’ve created an
environment so inclusive y that our spelling, our inability to pay attention doesn’t
matter. 20–30 years ago they called us mentally defective, retarded, lazy, ‘you need to
work harder, sit still’, they’d say. About thirty years ago a bunch of people quit hiding
their disability. They quit y I get distracted easily. Those kids [you will be working with]
are the future: you’re holding the torch y we’re going to change the world y Every time
you come out of the closet you’re changing LDs for someone else: y The biggest piece is
for these kids to have a role model, identify with someone who is highly successful y
Owning our disability, our different brains, doesn’t mean we discount the struggle which
is social, but we’re committed to passing on our diversity to younger kids y We’re going
to the future with this, we put the labels on, and people follow. We communicate
metacognitive skills. We teach these kids that their brains are a resource, not a problem.

CODA

The neuroscientists whose research opens this essay share with PE2E this
profound construct: the brain in all its neural diversity is about the future.
As Miguel Nicolelis so appealingly put it, ‘‘neuronal democracy’’ provides a
contemporary metaphor for a future plus-que-parfait. Yet there is also a
profound existential gap separating the quotidian extrapolations of small
amplitude frequencies as abstractions on the part of paediatric
A Child Surrounds This Brain 25

neuroscientists from the widely perceived public reception – and, indeed,

constitution – of neurodiversity as a helpful context in medicine, disability
activism, and family life. The various constituencies whose words and
practices I have sketched in this essay do not necessarily see the burdens and
benefits of putative brain differences from the same perspective. Never-
theless, collectively, the human brain is rapidly being hailed as a bridge to
the future by neuroscientists, clinicians, families of diagnosed children, and
activist young adults characterised with ADHD and LD themselves. In their
company, we presently peer over an existential gap; there, neurodiversity is
increasingly engaged as a polysemic metaphor for the acceptance of human
difference lodged in the physiological brain.
Neurodiversity, as I have tried to show, is under intense negotiation not only
in labs but also in households across America, where 15% of school-aged
children are now diagnosed for special education services; some of them will
grow up to be activists like members of PE2E. Whatever future is negotiated
across this existential gap, we are all stakeholders in the status of its reality.

NOTE
1. I thank Alison Cool for this point, and for her insightful questions on an earlier
draft of this chapter.

ACKNOWLEDGMENTS

My research into the science of paediatric neurological diversity is drawn

from a larger collaborative project on ‘‘cultural innovation in learning
disabilities’’ with Faye Ginsburg. I am deeply grateful for our working
friendship. Publications resulting from our joint research include Ginsburg
and Rapp (2010), Rapp and Ginsburg (2011), and Rapp and Ginsburg
(2012). Portions of our work have been funded by the Spencer Foundation
and NYU’s Institute for the Study of Human Development and Social
Change. I thank the many scientists, families, and young adults who
patiently participated in this research.

REFERENCES
Albrecht, G., Seelman, K. D., & Bury, M. (2001). Handbook of disability studies. Thousand
Oaks, CA: Sage.
26 RAYNA RAPP

Appadurai, A. (1996). Modernity at large: Cultural dimensions of globalization. Minneapolis,

MN: University of Minnesota Press.
Bettelheim, B. (1967). The empty fortress: Infantile autism and the birth of the self. New York, NY:
Simon & Schuster.
Centers for Disease Control. (2011). Attention Deficit/ Hyperactivity Disorder: What Should You
Know? Retrieved from http://www.cdc.gov/ncbddd/adhd/data.html. Accessed on June
16, 2011.
Choudhury, S., Nagel, S. K., & Slaby, J. (2009). Critical neuroscience: Linking neuroscience
and society through critical practice. BioSocieties, 4, 61–77.
Ginsburg, F., & Rapp, R. (2010). The social distribution of moxie: The legacy of Christine
Sleeter. Disability Studies Quarterly, 30, 2. Availalbe at http://www.dsq-sds.org/article/
view/1239/1284. Accessed on 16 August 2011.
Jablonka, E., & Lamb, M. (2005). Evolution in four dimensions: Genetic, epigenetic, behavioral,
and symbolic variation in the history of life. Cambridge: MIT Press.
Lock, M., Freeman, S., Sharples, R., & Lloyd, S. (2006). When it runs in the family: Putting
susceptibility genes in perspective. Public Understanding of Science, 15, 277–300.
Luhrmann, T. M. (2000). Of two minds: The growing disorder of American psychiatry.
New York, NY: Knopf.
Moreira, T., & Palladino, P. (2005). Between truth and hope: On Parkinson’s disease,
neurotransplantation and the production of the ‘self’. History of the Human Sciences, 18,
55–82.
Nicolelis, M. (2011, March 15). DRshow.org radio interview. Retrieved from http://
thedianerehmshow.org/shows/2011-03-16/miguel-nicolelis-beyond-boundaries. Accessed
on March 18, 2011.
Ortega, F. (2009). The cerebral subject and the challenge of neurodiversity. BioSocieties, 4,
425–445.
Pickersgill, M. D., Cunningham-Burley, S., & Martin, P. (2011). Constituting neurologic
subjects: neuroscience, subjectivity, and the mundane significance of the brain.
Subjectivity, 4, 346–365.
Rapp, R., & Ginsburg, F. (2011). Reverberations: Disability and the kinship imaginary.
Anthropological Quarterly, 84, 379–410.
Rapp, R., & Ginsburg, F. (2012). Disability worlds. In: M. Inhorn & E. Wertzel (Eds.), Medical
anthropology at the crossroads. Durham, NC: Duke University Press.
Roseberry, W. (1982). Balinese cockfights and the seduction of anthropology. Social Research,
49, 1013–1029.
Sleeter, C. E. (1987). Why is there learning disabilities? A critical analysis of the birth of the field
with its social context. In: T. S. Popkewitz (Ed.), The formation of school subjects: The
struggle for creating an American institution (pp. 210–237). London: Palmer Press.
Tough, P. (2011, March 21). The poverty clinic. The New Yorker, pp. 25–30.
Vidal, F. (2011, February 11). The self-defeating logic of the Neuro. Psy-Ences colloquium, New
York University.
Weisberg, D. S., Keil, F. C., Goodstein, J., Rawson, E., & Gray, J. R. (2008). The seductive
allure of neuroscience explanations. Journal of Cognitive Neuroscience, 20, 470–477.
INNOCENT MACHINES:
ASPERGER’S SYNDROME AND
THE NEUROSTRUCTURAL SELF

Elizabeth Fein

ABSTRACT

The ways in which the brain, as mapped by bioscience, has become

popularly understood as the locus and determinant of the self is a topic of
increasing importance within medical sociology. Nikolas Rose has
influentially chronicled the emergence of a ‘‘neurochemical self,’’
determined by brain chemistry and thus fluid, malleable, and open to
improvement via increasingly fine-tuned psychopharmacology. This
chapter argues for the contemporaneous emergence of a neurostructural
self, intrinsic to the growing neurodiversity movement. Drawing on trends
in contemporary neuroscience and biological psychiatry, this model of
‘‘brainhood’’ conceptualizes the brain-as-self as a material system:
governed by physical laws, and thus both morally innocent and robustly
predictable. Rather than being infinitely open to intervention and
optimization, however, the neurostructural self is imagined as fixed and
immutable, resistant to the medical intervention and presumption of
infinite flexibility inherent within neurochemical selfhood. This chapter
draws on a two-year ethnographic study of autism spectrum disorders in
North America, investigating the ways in which circulating discourses
about medicine, culture, and identity are shaping the emergence,

Sociological Reflections on the Neurosciences

Advances in Medical Sociology, Volume 13, 27–49
Copyright r 2011 by Emerald Group Publishing Limited
All rights of reproduction in any form reserved
ISSN: 1057-6290/doi:10.1108/S1057-6290(2011)0000013006
27
28 ELIZABETH FEIN

development and use of autism spectrum diagnoses in contexts of daily

practice. In this chapter, I explore why individuals with the autism
spectrum disorder known as Asperger’s syndrome are particularly
effective examplars, consumers, and producers of this neurostructural
selfhood.

INTRODUCTION: ‘‘IT’S NOT NEUROCHEMICAL.

IT’S STRUCTURAL’’
I am sitting at a monthly meeting of the local chapter of the Asperger
Support Network (ASPNET). ASPNET is a national organization that
holds support group meetings in a number of major US cities. The meetings
are run by and for adults who have been diagnosed, or who self-identify, as
having Asperger’s syndrome, a neurodevelopmental condition on the autism
spectrum characterized by narrow or repetitive behaviors or interests and
difficulty with social interaction. The topic of today’s meeting is medica-
tions, and the general consensus is that they do not work very well.
‘‘I don’t want to take something to fix me. I’d rather work on things
myself. This is who I am and I need to learn to live with myself the way I
am’’ says Eduard, a young man who is a regular attendee at these meetings.
George, that week’s meeting facilitator, speaks up to clarify. There are no
medications that work directly to ‘‘fix’’ Asperger’s, he notes, only
medications for the depression and anxiety that arises out of ‘‘all the
depressing things about living with Asperger’s! Because my understanding
is, it’s not neurochemical. It’s structural, it has to do with brain structure.’’
On the face of it, George is just stating a known medical fact. Unlike
many other mental conditions such as depression or schizophrenia, no
medication has been found that can target the core symptoms of Asperger’s
syndrome or the other ‘autism spectrum disorders’ with which it is
commonly grouped. Autism spectrum disorders (ASDs) are considered in
many medical and state classification systems to be developmental
disabilities, conceived of and treated according to a different knowledge
regime and treatment infrastructure than psychiatric or mental health
problems. Most mainstream scientific research on ASDs holds that these
disorders are present from birth and remain with an individual throughout
their life, pervasively influencing the way in which he or she experiences and
learns to interact with the world. But when George asserts that his condition
is ‘‘structural’’ rather than ‘‘chemical,’’ he is doing more than stating a fact
Asperger’s Syndrome and the Neurostructural Self 29

about the origins and course of his condition. He is also invoking a complex
and connotatively rich meaning system, an emerging cultural model that
differentiates his condition – and himself – from others who struggle with a
diagnosed mental disorder. It is a differentiation with powerful moral,
practical, and aesthetic ramifications for George’s identity.
At a time when selfhood is increasingly conflated with the biological brain,
what kind of brain one is thought to have is an increasingly powerful
influence on one’s sense of self. Several scholars have recently commented on
the idea that ‘we are our brains,’ a notion that Vidal (2009) refers to as
‘‘brainhood’’ (Ortega & Vidal, 2007; see also Dumit, 2004; Rose, 2003, 2007).
However, as Rees (2010) has elegantly demonstrated, the lived effect of the
idea that ‘we are our brains’ depends very heavily on what sort of brains we
are imagined to be. It matters a great deal what kind of brain science one
inhabits, consumes, enacts, co-creates, as each approach ‘‘offers a different
kind of ethical equipment for living a (neuroscientific) life: different kinds of
words, concepts, metaphors, and images for making sense of one’s existence’’
(p. 156). Furthermore, different diagnoses are situated in different intellectual
traditions of knowledge production, leading to different conceptualizations of
the relationship between brain and behavior. Thus, individuals ‘‘living under
the description’’ (Martin, 2007, p. xix) of these differing diagnoses are
enrolled into and inhabit differing ‘brainhoods.’
In an influential investigation of the impact of the somatization and
technologization of sciences of the self upon the identity of individuals, Rose
(2003, 2007) chronicles the emergence of a ‘‘neurochemical self’’:

Individuals themselves and their authorities – general practitioners,nurses, teachers, parents –

are beginning to recode variations in moods emotions, desires, and thoughts in terms of the
functioning of their brain chemicals, and to act on themselves in light of this belief [y]and to
see psychiatric drugs as a first line intervention, not merely for symptom relief but for ways of
modulating and managing these neurochemical anomalies. (Rose, 2007, p. 223)

In what follows, I will argue for the contemporaneous emergence of a

neurostructural self. This neurostructural self also draws on trends in
contemporary neuroscience and biological psychiatry, rejecting mid-
twentieth century notions of the ephemeral, intersubjective mind in favor
of conceptualizing the brain as a material system: governed by physical laws,
morally innocent, and robustly predictable. However, rather than being
fluid, malleable, and open to intervention and optimization, the neuro-
structural self is fixed, set, pervasive, and immutable. In Eduard’s words,
neurostructural selfhood determines his ‘‘who I am’’ – and that is a thing to
be lived with, not medically altered. The politics of the neurostructural self
30 ELIZABETH FEIN

thus use the materiality of the biological brain as an argument for

acceptance, and against the expectation of infinite flexibility and change
associated with neurochemical selfhood. And individuals with Asperger’s
syndrome – known for their behavioral rigidity, adherence to rules and
predictable routines, and affinity for technoscience – are particularly
effective examplars, consumers, and producers of this neurostructural self.

AUTISM SPECTRUM DISORDERS IN THE

HIERARCHY OF NEUROIDENTITIES
Asperger’s syndrome is a newly developed diagnostic category which has
gained tremendous traction over the past decade. Its diagnostic criteria, first
developed in 1995, are under ongoing debate, although they consistently
revolve around two core characteristics: impairment in social interaction
and restricted or repetitive behaviors and interests. These must be evident
from an early age, and must occur without the language delay or mental
retardation found in the other ‘autism spectrum disorders’ with which they
are classified (APA, 2000). Amidst considerable controversy about whether
Asperger’s syndrome is substantively different from ‘high-functioning
autism,’ there are strong indications that in the next edition of the
Diagnostic and Statistical Manual of Mental Disorders, the diagnosis will
be removed and subsumed under Autism Spectrum Disorder.
In clinical practice as well as among lay individuals familiar with the
category, Asperger’s syndrome is generally recognized not by diagnostic
criteria but by a distinctive presentation: individuals who display a
fascination for structured topics and factual information accompanied by
behavioral rigidity and inflexibility, social awkwardness, a preference for
following set rules, and sometimes a sense of emotional aloofness, often
appearing more comfortable with machines than people. This appearance of
detachment from social life is frequently exacerbated by their difficulty
displaying and responding to nonverbal social cues such as facial expression
and voice tone; people with Asperger’s syndrome are thus often described as
‘robotic’ or ‘monotonous’ in both the content and presentation of their
communications. Many individuals diagnosed with Asperger’s syndrome
also possess unusual skills, ranging from the capacity to memorize large
amounts of information on particular topics, to synaesthesia or other
idiosyncratic perceptual abilities. The hallmark of Asperger’s syndrome in
clinical practice is the ‘special interest’: a topic or activity, usually fairly
Asperger’s Syndrome and the Neurostructural Self 31

circumscribed, with which the individual is fascinated – transfixed,

passionate, and obsessed. Asperger’s syndrome thus bundles together both
valued and devalued traits and behaviors, fitting oddly into medicalized
diagnostic classification systems designed mainly to capture psychopathol-
ogy. Partly in consequence, individuals diagnosed with Asperger’s syndrome
and related autism spectrum disorders have been at the forefront of the
emerging ‘‘neurodiversity movement’’ (described in Ortega, 2009), seeking
to reconceptualize Asperger’s as not a disease but a minority cultural
identity, to be accepted and in fact embraced with pride.
The data presented here come from the author’s dissertation research on
this phenomenon: an ethnographic study investigating the ways in which
circulating discourses in the contemporary United States about medicine,
culture, and identity, are shaping the emergence, development, and use of
the Asperger’s syndrome diagnosis in contexts of daily practice. Over a
course of 18 months, I observed and interviewed in sites where ideas about
what Asperger’s syndrome is, and how it should be responded to, were
negotiated and put into practice. The work was conducted in a variety of
sites: psychiatric clinics, conferences, schools, community centers, a summer
camp, and even a science fiction convention. I conducted over a 100
interviews with individuals affected by Asperger’s syndrome and related
ASDs: namely, people diagnosed with these conditions, their families, and
the professionals who work with them. Effort was taken whenever possible
to observe and interact with individuals across a variety of settings: in their
homes, in their school classrooms, and at social events. All names and
identifying details of people, places, and programs have been changed.
Much of the data in this chapter comes from eight months of fieldwork in
Brookfield, a rural school district on the East Coast of the United States. At
Brookfield, implicit cultural models of chemical and structural selves, of
mind and brain, of ‘brain developmental’ and ‘psychiatric’ conditions, had a
powerful influence on educational discourses and practices.

BRAINHOODS OF BROOKFIELD

It is a busy day in the ASPEN (Asperger’s Syndrome Pride and Education)

classroom, but Emily, the assistant teacher, has found a rare quiet moment
to talk with me while the students are at lunch. As we begin our interview, I
ask her the same question I ask everybody: how do you define Asperger’s
syndrome? Emily is not sure how to answer, struggling to put her practical
wisdom into words. She has only been working with this population for a
32 ELIZABETH FEIN

few years, and considers herself anything but an expert, though her
combination of easygoing camaraderie and straightforwardness gets her a
lot of respect from her students. A breakthrough comes when I ask her
about her prior work history. She draws a comparison that I heard
frequently around her school district: between the students in her classroom,
all of whom have been diagnosed with Asperger’s syndrome, and the other
students with whom they share a building, the students in the ‘Pathways’
program. These students are classified as ‘emotionally disturbed’ (ED), and
known colloquially as the ‘psychiatric’ kids. In the eyes of Emily and many
of the other teachers and families involved in the ASPEN program, they
were everything the Asperger’s students were not.

Alice [the other teacher] and I were upstairs on the third floor with Pathways, which is
emotionally – well, I don’t want to say disturbed, but – I forget what the term is, these
days – emotionally fragile, kids that were under the supervision of Marden Psychiatric
Clinic. And they, you know, they had a social worker – of course [the Asperger’s
students] do, too, but – they would go out and see a psychiatrist, you know, a lot of them
were on medication. Which some of them here are, too – so it was just like, more of: the
way they were was probably a product of their home life, how they were brought up,
what they’d been put through, maybe some chemically – you know, they mighta had
hyper-whatever[y] [The Pathways students] were more difficult than these guys. They
were all work-avoidants. These [Asperger’s] guys, most of them like to do the work. And
they like to get it done[y]They don’t seem to smoke, or – you know, the other kids in
Pathways, they’re always running out for cigarettes[y] It’s nice! It’s a nice change.
I enjoy them, actually.

As Emily works to articulate the difference between these two groups, she
tries to put a common-sense understanding into words, frequently referencing
the shared nature of this understanding: ‘‘They see a psychiatrist, you know.’’
But both groups see psychiatrists and social workers. Both take medication.
The shared understanding of what truly differentiates them – what Emily is
attempting to bring from implicit to explicit – is deeper than their practices,
their observed behaviors. What really matters, as she goes on to explain, is
this: the problems of the Pathways kids, and their solutions, arise out of fluid,
shifting malleable things, like their life experiences, and their bodily
chemicals. The Asperger’s difference, however, is hard-wired into the
material brain, fixed and impervious to the vicissitudes of pharmacological
and interpersonal chemistry. And this distinction turns out to have wide-
ranging implications for how the behavior of each set of students is
interpreted and treated.

Elizabeth: What do you think accounts for those differences, between the Asperger’s
kids and the Pathways kids?
Asperger’s Syndrome and the Neurostructural Self 33

Emily: Now the Asperger’s – well, that’s a whole – brain developmental thing, isn’t it. So
that alone, I believe, would alter their behavior. And that’s just the way they’re gonna
be. You know what I mean?

I think the Pathways kids – theirs is a learned behavior. You know? Where they learned
to be work avoidant. Or they’ve been told: you’re nothing but a piece of crap, all their
lives, so they act out that way. These guys [gesturing to the ASPEN classroom], I think
they will always have that. The way they act. As they get older, they can compensate for
it a bit. But the other ones, at Pathways, they should be able to[y]they could learn to do
the right thing. Depending on if they get out of their environment at home. They have
fine families, the Asperger’s [students], and it’s not because of – but then again, their
behaviors aren’t bad! They’re just different, you know, they’re just different.

And who’s really to say who’s normal, and who’s different. We’re all different, you
know? And that’s fine, it makes it more interesting [y] I think it’s more of: this is who
they are. And that’s not really going to change. Unless – I mean, there’s not a
medication, to fix Asperger’s – and they don’t want to be fixed! You know? I mean, I
don’t think [they do]. That’s who they are and they like who they are.

Emily’s description of the differences between the students in her

Asperger’s classroom and the students in the Pathways program exemplifies
a powerful and pervasive discourse about the difference between these
groups of students, one that I heard frequently both within the Brookfield
school district and outside of it. Her description tells us a great deal, not
only about the attributes that she observes among particular groups of
students, but more saliently, about the presumed relationships between these
attributes.
It is the etiological status of Asperger’s syndrome as a ‘‘brain
developmental thing’’ that leads Emily directly to her conclusion that
‘‘that’s just the way they’re gonna be. You know what I mean?’’ What she
means – and the conclusion that she assumes I will draw as well – is twofold.
First, the characteristics and dispositions of the Asperger’s students arise
inevitably out of their origins in brain development. Second, the solid and
robust physicality of this brain difference, its imperviousness to outside
forces such as medication, motivates a stance of accepting the students –
‘‘who’s to say who’s normal?’’ – rather than futile attempts at changing
them. Because the differences exhibited by the Asperger’s students arise out
of the physical makeup of the brains they were born with, these differences
are neither good nor bad, but morally inert. As such, they can even be
experienced as productive, interesting, and enjoyable. The co-existence
between these attributes – the origin of Asperger’s in the biological brain,
the innocence of the students’ motivations, and the way in which they
manifest that innocence in their rule-bound, predictable, and productive
34 ELIZABETH FEIN

behaviors – is not merely a coincidence of factors, but a metaphorically

resonant causal narrative. The ontological assumptions underlying their
diagnosis fall into a neat and compelling parallel with their behaviors.
Brains are material, predictable, and morally innocent – just like the
students that best enact and exemplify them.
The Pathways students, however, do not only behave differently; they
exist within an entirely different ontological and interpretive paradigm.
Their way of being is perceived as malleable, vulnerable to outside influence,
in ways that the Asperger’s students’ are not. Along with their capacity for
change, responsiveness and intersubjectivity comes culpability. Emily’s
evaluation of their behaviors arises not out of relativist tolerance but out of
a sense that there is a ‘‘right thing’’ and the belief that they can, and should,
learn to do it. They are moral, intentional agents, shaped by the social world
and therefore responsible for their participation within it. Such behavior
evokes the ontological assumptions of the psychiatric tradition in which
their diagnostic category developed. ‘Psychiatric’ kids, kids whose way of
being is known through psychiatry rather than neuroscience, are unpre-
dictable, socially embedded, morally culpable, and messily human. They are
also, in this comparative framework, systematically disfavored.
Both the ‘‘Pathways kids’’ and the students in the Asperger’s classroom
are strongly identified with the classifications that have been placed upon
them. These classifications determine their educational trajectories, as well
as a great deal of their daily context: who will be their classmates, how they
will be taught, what opportunities will be presented to them. Both sets of
classifications draw upon ideas about how, and why, we become who we are.
These ideas have been heavily shaped by disciplines that study the mind:
psychology, educational sciences, psychiatry, and neuroscience. But the
tradition that each classification draws upon is different. As a result, the
kinds of people that each classification imagines and describes are different
as well, different in ways that transcend even the biological and behavioral
differences that each group brings to the classroom.
In the ASPEN classroom, the ‘psychiatric’ kids are conceptualized as
having neurochemical selves: determined by brain chemistry and thus fluid,
malleable, and open to improvement via increasingly fine-tuned psycho-
pharmacology. As this form of selfhood is imagined in the ASPEN
classroom, it also conjures up longstanding connotations of psychiatric
disorder dating back to the psychoanalytic dominance of the mid-twentieth
century, in which ‘psychiatric’ problems are attributable to parental
mistreatment and thus amenable to moral censure. The Asperger’s kids,
however, diagnosed with a developmental disability on the autism spectrum,
Asperger’s Syndrome and the Neurostructural Self 35

enact a different view of the neurological self. They are conceptualized as

having neurostructural selves: fixed, machine-like, predictable, and self-
contained, impervious to intersubjective influence and thus immune from
blame. Not only do the two groups of students have brains that work
differently, but they also represent and re-enact different histories of brain
knowledge – different sets of ideas about how, and how much, our brains
make us who we are. In the Brookfield school district, as in many other sites
where consequential decisions are being made and resources allocated based
on diagnostic classifications, seemingly value-free observations are in fact
shaped by longstanding debates and deep-running moral and epistemolo-
gical conflicts that underlie contemporary psychiatry.

MIND INTO MATTER: PSYCHOANALYTIC

AND BIOLOGICAL PSYCHIATRIES

In the mid-twentieth century, the discipline of psychiatry, closely allied with

medicine, emerged as a powerful discourse for understanding many aspects
of life experience from the normal to the pathological (Horowitz, 2002).
During these early years of expansion, the field was dominated by a
psychoanalytic psychiatry, originating with Sigmund Freud and expanded
upon by a number of subsequent scholars and practitioners of mental health
treatment. The mind, as conceptualized by psychoanalytic psychiatry, was a
deep and mysterious psychological space, largely invisible to conscious
reflection. This deep psychological unconscious, and the powerful conflicts
that drive it, were understood to be formed by early life experiences with
caregivers. Ever-shifting and ephemeral, such a psychological system cannot
be directly perceived, cannot be navigated or intervened upon effectively
using physical principles, but rather must be inferred through an ongoing
and relational interpretive process. Skilled practitioners of the ‘talking cure’
of psychoanalytic psychotherapy developed a finely honed intuition and
empathy which allowed them to sense shifts in their patients’ experience,
often through noting shifts in their own.
As Luhrmann (2000) has chronicled in her study of diverging models of
mind and brain in contemporary psychiatry, many of the guiding principles
of contemporary biological psychiatry, along with its clarion language of
radical paradigm shift, developed out of a mood of exasperation with the
limitations of this deeply entrenched psychoanalytic approach. In particular,
the unpredictability of psychoanalytic interventions and their outcomes, the
impossibility of disproving psychoanalytic theory, and the tendency of this
36 ELIZABETH FEIN

tradition toward blaming parents and practitioners for empathic failings

when patients fall ill or do not improve with treatment led to a powerful
backlash in the latter third of the twentieth century against what psychiatry
had become. The growing body of scientific findings that defined a genetic
basis of autism, for example, was a tremendous exoneration of parents of
children whose autism had been blamed on their emotional failings under
the old system. A new model for understanding mental illness emerged,
rejecting both the ‘unscientific’ unpredictability of interpretive and inter-
subjective psychoanalytic practice and its moralizing tendencies by
positioning mental disorders in a diseased brain rather than a troubled
mind. But traces of the foundational analytic traditions of contemporary
psychiatry remain, both in their original form and in the way they have
powerfully shaped the foci and motivations of a biomedical tradition that
defined itself in opposition.
Biological psychiatry, in its strongest form, argues that a principled and
practical stance toward mental disorders must be based on an understanding
of these disorders as rooted in the brain rather than the mind. This
somewhat slippery distinction is frequently and forcefully delineated as
follows: the brain is a physical organ, a material system that can be known,
predicted, and effectively intervened upon using a scientific approach
characterized by replicable empirical experimentation. This radical shift
necessitated a transformation in the way that the mental self was envisioned.
As Pickersgill (2009) has illustrated in his study of neuroscientific
approaches to antisocial personality disorder, reducing mental disorders
to self-contained physiological systems is always incomplete and proble-
matic, and experienced as such by scientists and practitioners who recognize
the ongoing and complex interactions of psyche and soma. But frequently,
such ambiguity and complexity creates the need for the development of an
even more forceful call for paradigm shift. In the words of Thomas Insel,
currently the head of the US National Institute of Mental Health (NIMH):

[P]sychiatry’s impact on public health will require that mental disorders be understood
and treated as brain disorders [y] In mental disorders, just as in the rest of medicine,
better understanding of pathophysiology should yield diagnosis based on biomarkers
and treatments based on rational designs targeting the pathophysiology. (Insel &
Quirion, 2005, pp. 2221–2223)

What is striking about such language is its urgency and totality: mental
disorders are required to be understood and treated as problems of physical
systems. Whatever qualities may differentiate mental disorders from ‘‘the
rest of medicine’’ – all the subjective elements that make depression different
Asperger’s Syndrome and the Neurostructural Self 37

from liver failure – must be explicitly denied in order to insure the effective
functioning and implementation of such a vision. Conceptualizing mental
disorders in this way brings a tremendous amount of power and relevance to
the discipline of psychiatry – not only power to implement change, but also
power to be recognized as a legitimate scientific practice and branch of
medicine in the rapidly expanding health care sector.
Redefining mental illnesses as sicknesses of the body, analogous to heart
attacks and broken legs, also works to mitigate stigma and blame. For
example, a recent educational campaign by the US National Alliance on
Mental Illness (NAMI), featured brochures whose cover reads ‘‘Mental
Illness: An Illness Like Any Other.’’ Inside, the text begins:
Mental illnesses are medical conditions [y] Just as diabetes is a disorder of the pancreas,
mental illnesses are medical conditions that often result in a diminished capacity for
dealing with the ordinary demands of life.

The great importance NAMI and other antistigma organizations place upon
comparing depression and anxiety to disorders of body parts grows out of what
Luhrmann (2000) calls ‘‘a moral vision that treats the body as choiceless
and nonresponsible and the mind as choice-making as responsible y
If something is in the body, an individual cannot be blamed; the body is
always morally innocent’’ (p. 8).
Numerous commentators (Choudhury, Nagel, & Slaby, 2009; Carpenter-
Song, 2009; Luhrmann, 2000; Solomon and Bagatell, 2010) have raised
concerns about the disappearance of subjective, phenomenological, inter-
personal, and temporal aspects of experience in the reduction of mental
disorders to physical systems of individual, material bodies. Socioculturally
embedded and biographically shaped selves, however, are difficult to
conceptualize and make function within contemporary scientific knowledge
production systems focused on replicability and visualization. As Dumit
(2004) notes in his ethnographic study of brain scanning technologies, the
‘‘taboo nature of subjectivity in science’’ in which ‘‘every possibility of
subjectivity must be eliminated in order to produce something reliable – that
is, something real, something known’’ – leads to a romanticizing of
‘‘automation, which stands as the opposite of interactivity’’ (p. 122). A
‘‘scientifically principled’’ approach to mental health care, including
psychotherapy, was recently defined in a widely circulated essay as one in
which an intervention consistently produces the same results each time you do
it. Clinicians were castigated for relying excessively on their own intuition and
empathy rather than hard scientific evidence; such a retrograde attitude, the
article claimed, would render the discipline of psychology obsolete in the
38 ELIZABETH FEIN

increasingly value-based world of medicine and health care (Baker, McFall,

& Shoham, 2009). Thus, as various scientific discourses envision mental
disorders as arising out of deviations in predictable, material, morally
innocent systems, rather than messy, unpredictable intersubjective minds,
they reference and co-produce powerful motivations for doing so. These
motivations span epistemological, financial, and moral realms.
However, the tendency to divide the perceived world between material
objects that follow physical laws and psychological beings that are
intentional and agentic – between biological brains and blameworthy minds
– may also be rooted in factors specific and fundamental to human
cognition. Miresco and Kirmayer (2006) propose an intriguing explanation
for the persistence of what they call ‘mind-brain dualism’ among psychiatric
clinicians even in the face of ongoing efforts to develop a more integrative
‘biopsychosocial’ model of psychiatry. They review an extensive range of
studies from developmental psychology, noting a wide range of research
that shows:

infants use a ‘‘naive’’ or ‘‘intuitive physics’’ to predict the movements of inanimate

objects that are propelled by external forces and an ‘‘intuitive psychology’’ to anticipate
the behaviors of beings who act intentionally. Over the course of human development
[y] [i]ntentional events tend to be explained in psychological terms and to be associated
with attributions of personal causality and responsibility, whereas unintentional events
are seen as following physical laws and to be beyond the range of human responsibility.
(pp. 913–914).

‘Folk psychology’ and ‘folk physics’ seem to develop within us from a very
young age as two equally powerful but differently applicable ways of
interpreting the behavior of entities around us. Blame, responsibility and
personal causality are the province of intentional agents understood in
psychological terms; physical objects are understood according to an entirely
different system of physical laws. The powerful influence of human cognitive
quirks and particularities on the way we classify perplexing or troubling
behavior may account for the pervasive tendency to split into dualistic mind
and brain explanations even among those who recognize their limitations.

BATTERIES ARE REALLY USEFUL: ASPERGER’S

SYNDROME AND THE TECHNOSCIENTIFIC SELF

The potential origins of mind-brain dualisms in human cognitive

particularities also suggest that the influence of cognitive variation on the
Asperger’s Syndrome and the Neurostructural Self 39

very psychiatric systems that aim to classify and describe that variation may
be more complex – more constitutive, and less passive – than previously
realized. Consider the following quote from cognitive psychologist Simon
Baron-Cohen and his research team:

Systemizing is held to be our most powerful way of understanding and predicting the
law-governed inanimate universe. Empathizing is held to be our most powerful way of
understanding and predicting the social world [y] Systemizing works for phenomena
that are indeed ultimately lawful, finite and deterministic [y] To predict human
behavior, empathizing is required [y] People are clearly not rule-governed. (Baron-
Cohen, Richler, Bisarya, Gurunathan, & Wheelwright, 2003 pp. 361–362)

This statement could be read as a critique of the biological turn in

psychiatry and its attempt to treat mental distress as if it belonged to the
‘‘law-governed inanimate universe’’ in which there is no difference between a
brain and a pancreas. But it is actually a description of what Baron-Cohen,
one of the foremost researchers of autistic cognition, considers to be the
autistic cognitive style, characterized by strengths in systemizing, and
weaknesses in empathizing. Baron-Cohen and his collaborators have
proposed that one of the characteristics that consistently distinguishes
people diagnosed with ASDs from similar people who do not meet these
diagnostic criteria is a relative strength in ‘folk physics’ and relative
weakness in ‘folk psychology’ – the same profile that Miresco and Kirmayer
identified as plaguing contemporary psychiatry. These qualities allow people
on the autism spectrum to serve as particularly effective and enthusiastic
consumers, exemplars, and representatives of this powerful but arguably
impoverished science of mental disorder.
The association between Asperger’s syndrome and the gifts and costs of a
scientific approach to the world is longstanding, beginning with the very
birth of the category. Asperger’s syndrome was named after pediatrician
Hans Asperger, who in 1944 identified a ‘‘particularly interesting and highly
recognizable type of child’’ whom he nicknamed ‘‘the little professors.’’
Physically and socially awkward, often egocentric and pedantic in their
conversation, and socially and emotionally immature for their age despite
unsettlingly adult-like speech, the children he observed were also capable of
‘‘unswerving determination and penetrating intellectual powers’’ which
could lead to ‘‘outstanding achievements in their chosen areas’’ such as
astronomy and mathematics (Asperger, 1944[1991], in Frith, 1991, p. 88).
This combination of social and emotional detachment with interest, and often
prowess, in systems and pursuits that are decontextualized, mechanical,
logical, and inanimate has been remarked upon by numerous commentators
40 ELIZABETH FEIN

on Asperger’s syndrome. The diagnosis and its mad-scientist connotations

rapidly captured the attention of the popular media, soon getting retro-
actively applied to odd-but-brilliant thinkers throughout history, from
Albert Einstein to Bill Gates. Renowned clinician Tony Atwood, one of the
first people to write extensively about Asperger’s syndrome, opens his recent
book ‘The Complete Guide to Asperger’s syndrome’ with a vignette about a
little boy named Jack, mocked and excluded by his peers, who is invited to a
birthday party by a sympathetic female classmate. He arrives at her door and
rather than joining the other children, proceeds to monologue to her mother
for ten minutes about batteries. ‘‘Do you like batteries? I do. I have a hundred
and ninety-seven batteries. Batteries are really useful. What batteries do you
have in your remote controller?’’ (Atwood, 2007, p. 11). Atwood understands
that the best way to describe Asperger’s is not through a series of checklists;
instead, he invokes a vivid and mutually familiar schema. We have all met
that kid – or even if we have not, it is assumed we know the type. And a
critical component of that schema is its mutually resonant, co-constitutive
aspect. Jack not only loves machines, devices, predictable, and quantifiable
products of technoscience – but also acts as if he were one.

PROCESSES OF EXEMPLIFICATION:
CONSUMPTION, IDENTIFICATION,
PRODUCTIVITY, AND REPRESENTATION
Imagining people on the autism spectrum as being fundamentally machine-
like risks attributing to them a fundamental estrangement from the
interpretive, volitional, and social aspects of human life. As Nadesan
(2005) warns,

The irremediable gap between actual computers and human brains typically situates in
the fundamentally human capacities of sociality (love, desire, sympathy, empathy) and
spontaneous imagination (play, aspirations, fantasy), and in reflexive ‘‘self-consciousness’’
(whose nature remains ambiguous)[y]Consequently, the semiotic equations across
autism, technology/science, social deficiencies, and lack of personal reflexivity contain
the potential to dehumanize autism and the people associated with this label y in their
rendering as cyborgs.

Far from being an experience–distant imposition of parents and profes-

sionals, however, metaphors of machinery – especially computer technology
with its tendency toward repetition, mimesis and strict, predictable input–
Asperger’s Syndrome and the Neurostructural Self 41

output logics – is often eagerly adopted by many people on the autism spectrum
in order to conceptualize and explain their own experience of the world.
I met Paul at an ASPNET meeting, and he agreed to be interviewed for my
dissertation research. A professional computer programmer and systems
administrator, Paul had been diagnosed with autism as a young child. During
our interview, Paul embraced the notion of the ‘‘autistic mind and body and
spirit’’ as being ‘‘like a machine’’ in its elegant predictability and logic.
Paul: There is such a thing as the autistic culture now. It’s more of an online community,
at this point, because of the self-imposed isolation that autistics like to impose on
themselves, to keep themselves apart from people. So they reach out socially over the
Internet. And guess who invented the Internet, and all the computers we all use today?
Possible autistics.

Elizabeth: What makes you think that?

Paul: Well, because we all think like machines. And machines are very logical. And
machines have a certain beauty to it that is constant. You know what the next movement
will be, where it’s going and what it’s doing. That’s the beautiful part about it, and that’s
how the autistic mind and body and spirit works. And that’s how a machine works. Even
animals think the same way, believe it or not. Their brains are primitive, and not as
advanced or sophisticated as a human brain, but it moves when it wants, and it glides
when it wants because it moves with the patterns and the flows of nature. So because
machines were made out of natural materials, and it was formed by the hands of man
based on those materials, an autistic likes to control that environment.

Paul here is laying out a complex, multidimensional, and cyclical relationship

between autistic people and machines. Not only do autistic people seek out
systems in which ‘‘you know what the next movement will be,’’ they also engage
in an act of mutual co-creation with these systems. Computer technology, for
example, provides a space and scaffold for the development of autistic culture:
the identity of people on the autism spectrum is shaped by their participation in
this technology, they go on to create more of it, and their affinity with that
product leads them to seek it out and start the cycle of consumption,
identification, and production over again. Furthermore, the people Paul
describes as participants in autistic culture not only consume and produce
technology, but also represent and re-enact it in their behavioral and cognitive
repertories. A natural affinity to machines is deepened, over time, by an
increasing state of symbiosis and co-constitutive development (Turkle, 2005).
This sense of self as analogous to machinery brings benefits and costs.
Claiming the beauty and purity of the animal, of the machine that ‘‘moves with
the patterns and flows of nature’’ leaves Paul’s autistic subject estranged from
the ‘‘sophistication’’ of the intersubjective human brain. Instead, he depicts
himself and those who share his condition as a sort of neurological noble savage,
42 ELIZABETH FEIN

moving according to their own internal logic, uncontaminated by ‘‘advanced’’

human sociality. But they are also powerfully productive creatures, whose
affinity to ‘‘natural materials’’ allows them to ‘‘control that environment,’’
creating new technologies in a way that radically reshapes society.

THIS IS WHO I AM: NEUROSTRUCTURE AND THE

IDENTITY POLITICS OF HARDWIRING
As Ortega (2009) has observed, the metaphor of ‘wiring’ is also frequently
invoked by individuals on the autism spectrum as a means of naturalizing
their difference through neurologizing it. The image calls to mind an
information-bearing brain-as-machine, robust and intractable as metal.
Individuals on the autism spectrum frequently employ the image of self as
‘wired’ both as a means of metaphorical self-understanding and as a means
of advocating for the acceptance of their difference. For example, Katrin, a
young woman diagnosed as an adolescent with Asperger’s syndrome,
defined it to me in our interview as follows:
I would say it’s a neurobiologic difference in our minds. It’s a different kind of wiring
that makes it difficult for us to understand social cues and social interactions, and it also
creates some sensory issues. I tend to react to loud noises and bright lights, some textures
of food, clothing, textures, things like that. But it’s not a disease and it’s not an illness.
It’s a part of our personality and part of who we are.

Conceptualizing Asperger’s as an intrinsic part of her basic makeup, an

element of her nature whose concrete and pervasive presence she conjures
using the image of ‘‘wiring,’’ was central to Katrin’s ability to construe the
disorder as something that she could integrate into her sense of self.
I was reminded of these resonances when sitting in on ASPNET meetings.
At these meetings, having a difference in brain wiring or brain structure
became a powerful badge of identity. For example, at one meeting, the
father of a young man diagnosed with Asperger’s ventured a speculation
that rather than there being a sharp line distinguishing those on the autism
spectrum from ‘‘neurotypicals,’’ perhaps we are all on the same ‘‘human
spectrum.’’ The group facilitator firmly corrected him. ‘‘There really is a
difference between people on the spectrum and those who aren’t [y] It’s in
the brain, it’s wiring.’’ When the man retorted that perhaps all of our
neuroses are wired in, too, the facilitator shook his head decisively.
‘‘Sometimes, people on the spectrum will develop problems that are
psychological, as a result of what they’ve encountered. But the difference
Asperger’s Syndrome and the Neurostructural Self 43

isn’t.’’ He explicitly and insistently drew a distinction between ‘‘problems

that are psychological,’’ arising out of life experience, and the fundamental
difference of ‘‘wiring [y] in the brain’’ that differentiates him, and others
with Asperger’s, from those with psychological problems. The language of
wiring can be mobilized towards both inclusiveness and division; toward an
all-encompassing embrace of diversity and simultaneously toward a
differentiation of the ‘‘neurodiverse’’ from those who are troubled by
mental illnesses that feel more transient and less intrinsic.
Returning to the case study of the Brookfield school district will illustrate
the tremendous ramifications of these neuropolitical moves in practice. In
Brookfield, deeply consequential decisions were being made – and hotly
contested – every day around the question of what Asperger’s syndrome is,
what it is not, and how it should be responded to. The contrast between
students diagnosed with Asperger’s and other students with special needs,
particularly those with problems designated as ‘‘psychiatric,’’ was frequently
and strategically deployed by family members of the Asperger’s students in
order to mobilize educational resources toward providing those students
with their own dedicated classroom space, protecting them from the
‘‘ED kids’’ and their violent interpersonal entanglements. In the process, a
particular set of ideas about the relationship between brain, behavior, self,
and social world were mobilized and reinforced. Students in the Asperger’s
syndrome classroom were conceptualized as exemplifying the ideal type of
somatic brainhood: mechanistic and thus morally innocent, self-contained,
following a deterministic logic of physical systems rather than messy and
unpredictable interpersonal influence. This exemplary status was achieved
and maintained through an ongoing contrast with students classified as
‘‘emotionally disturbed’’ or ‘‘psychiatric,’’ who were strategically depicted as
socially capable, morally culpable, and, indeed, dangerous – in both the
unpredictability of their disorder and its capacity for interpersonal spread.

BREAKABLE MIRRORS: MIMESIS AND

MATERIALITY AT BROOKFIELD

Like many contemporary school districts, the Brookfield public school

system is struggling with the question of how to best serve the influx of
students newly classified with autism spectrum disorders. Ten years ago, the
mother of a son diagnosed with Asperger’s syndrome became frustrated by
her son’s social and academic struggles in school and, in collaboration with
44 ELIZABETH FEIN

the local school district, opened up a classroom targeted to the particular

needs of students with Asperger’s and high-functioning autism. Two years
later, the program closed down, leaving a large group of students and
families who had come to appreciate Asperger’s-specific education. The
question of where these students should go became extremely contentious.
The Brookfield school system started its own program for students with
Asperger’s, this one operating within the statewide special education
program, ACER (Associated Collaborative Education Resources), in an
ACER-specific building serving only students with special needs. Mean-
while, Valley View, a private school devoted to ‘high-functioning’ students
with autism spectrum disorders – those with approximately normal-range
IQ and language development, along with autistic-like behavioral and social
characteristics – had recently opened in the area. There, students were
encouraged to revel in the technological interests and activities that were
associated with their diagnosis, spending whole months building spare
computer parts and broken record players into massive marble mazes that
read ‘Asperger’s Can Be Fun!’ Several parents, unwilling to see their
children placed into the ACER system, advocated for their children to be
sent to Valley View, at the school district’s expense.
According to federal law in the United States, all children are entitled to a
‘free and appropriate’ public education. Parents who believe that their child’s
needs cannot be met through their public school district can request that the
district reimburse them for the cost of tuition at a private school; if this request
is denied, parents can pursue the matter in court. Doing so successfully, in this
case, required that parents demonstrate that ASPEN was inappropriate for
their children’s needs, and that those needs could only be met at the even more
neuro-exclusive Valley View. Relationships between the schools were therefore
deeply strained, and emotions among parents and administrators ran high;
accusations of betrayal, espionage, and conspiracy circled the community.
Millie was one of several parents in a prolonged court battle with the
school district. She is the mother of two teenage children, Richard and Lucy,
both of whom had been diagnosed with high-functioning autism spectrum
disorders. Richard currently attended Valley View; the school district was
attempting to place Lucy in ASPEN. At the time I interviewed her, Millie
was opposing this placement in every way she could think of, including
picketing the school district with a sign claiming they had violated her
child’s civil rights. A great deal of the work that she did, however, was
rhetorical, building up and heightening the perceived differences between
her children on the autistic spectrum and the children in the ACER system
who were classified as ‘ED,’ short for ‘emotionally disturbed.’
Asperger’s Syndrome and the Neurostructural Self 45

Millie: We’re not placing her into ACER. You can basically forget it [y] There are a lot
of children in these programs that are really inappropriate for these kids to be with,
because [kids on the autism spectrum] are basically socially naive kids. They mirror other
kids’ actions [y][Many of the available classroom placements] have autism and ED [y]
And a lot of kids that have autism, are not ED.

Elizabeth: How do you see the difference between autism and emotional disturbance?

Millie: I think a lot of these [autism spectrum] kids do act out, and they’re classified as
emotionally disturbed, because people don’t know how to handle them. I think they act
out because they’re stressed [y] I don’t think it’s truly ED, I think it’s more acting out
because they’re so frustrated. A lot of these kids have the expressive language issues and
they can’t say: this noise is just so much and I can’t deal with the noise. Or these lights, it’s
just so much and I can’t deal with these fluorescent lights, I can’t deal with the buzzing, I
can hear the humming of these lights. And it’s too much, it’s too overwhelming, it’s the
sensory, is way too much. And people don’t understand that the sensory overload is so
much for them that they can’t deal with it.

Elizabeth: And how do people interpret that?

Millie: They interpret that he’s acting out. People misinterpret it, basically. They think
it’s ED! They think it’s, you know, just bad behavior. And of course, it’s the mother’s
fault. Or it’s the father’s fault. It’s family situations. You know. And that’s what they
try – blaming me – with Lucy.

The truth is, many of the students being considered for ASPEN do
misbehave frequently, flying into extraordinary tantrums or stubbornly
refusing to comply with teacher’s requests – if they did not, they could stay
in a mainstream classroom and would not be eligible for ACER in the first
place. Accordingly, Millie must somehow make sense of their behavior in a
way that preserves her sense of them as innocent and rule-bound,
differentiating the meaning of their misbehavior from that of the ‘‘ED
kids.’’ She does so by using a metaphorical language of physical systems to
describe the ‘‘acting out’’ of Asperger’s students, in which stress leads inevitably
to breakage. They do not exhibit ‘‘bad behavior,’’ but act out instead because
they are ‘‘stressed.’’ The environment they are stressed by is sensory, not
interpersonal: fluorescent light, for example, or buzzing, or noise. ED kids, on
the other hand, inhabit a morally valenced world of emotional intersubjectiv-
ity; they act out because of ‘‘bad behavior’’. And such behavior, she notes, is
prone to being interpreted as the ‘‘mother’s fault y or the father’s fault.’’
Interpreting Lucy’s ‘‘acting out’’ as motivated by interpersonal factors rather
than as a reaction to pure sensory input, therefore, has significant negative
consequences, implicating and pathologizing not only Lucy but her entire
family system.
46 ELIZABETH FEIN

Furthermore, it puts Lucy herself at risk of harm, if such interpretations

should lead to her being placed in a classroom full of interpersonally violent
students. Not only Lucy’s physical and emotional well-being, but also her
behavioral repertoire is at risk of being affected. The concern Millie voices,
that Lucy will ‘‘mirror’’ the behaviors of these students if she is forced to
spend too much time around them, was one I heard frequently in Asperger’s-
specific programs such as Valley View. The fear is that students with
Asperger’s who are placed in classrooms with ED students may start defying
rules rather than compliantly following them; however, they will do so out of
rote imitation of others, rather than out of their own individual volition,
perhaps even unaware of the meaning of their actions to others. If an ED
student swears, she is doing so out of genuine hurt and anger; if an Asperger’s
student swears, he probably does not even know what the word means.

You got a kid with high-functioning autism put into a program where they shouldn’t be,
and they do the wrong thing because they come up to someone and look them right in
their face, and the kid shoves them away and they get slammed – well, they don’t know
the social cues! They don’t know any better y And they get put into a program where
you get some people that are – a little more street-savvy [y] and they get their face
beaten in every day. Of course you’re going to have nervous breakdowns and stuff.

Construing Lucy as innocent of social mores – as ‘‘not knowing any

better’’ – depicts her as a fundamentally different sort of sociomoral entity
from those who act out of their corrupt and corrupting knowledge of
the social world. Her misbehavior is instead interpreted as a reaction to the
physical world, deterministically pre-ordained by the sum total of the
quantity of input she is getting minus her system’s capacity to cope. Her
nervous breakdowns are an inevitable consequence of ongoing strain.
Like many cultural schemas with profound personal and political
ramifications, this is both an exaggeration and simplification of existing
conditions. People on the autism spectrum do in fact learn a great deal from
those around them; they are influenced by their life experiences and shaped
by their interactions with others. The teachers and family members in
Brookfield realize this, which is why they spend tremendous time and energy
and care cultivating positive relationships with their charges. The model of
Asperger’s kids as innocent machines is only one thread in the complex
tapestry of relationships connecting the Brookfield students to those around
them. However, it is a bright thread that runs through and unites a number
of contexts and conversations. It does a tremendous amount of work,
marshaling resources so that Millie can send her children to a private school
in an affluent suburb and keep them away from the ‘‘street-savvy’’ public
Asperger’s Syndrome and the Neurostructural Self 47

schoolers of her urban neighborhood, while protecting herself and her

family from stigma and blame for her daughter’s condition. Meanwhile,
pervasive sets of ideas about the moral ramifications of different kinds of
mental difference are subtly but powerfully reinscribed.

CONCLUSION: THE CHEMICAL AND THE

STRUCTURAL

Both at Brookfield and outside of it, individuals with Asperger’s syndrome

are uniquely positioned to serve as the exemplars of neuroscientific models
of mind as they are disseminated and adopted among lay communities. They
display behaviors that are as rigid, rule-bound and mimetic as the hardwired
brain imagined as a ‘‘fixed and immutable machine’’ (Rees, 2010, p. 160);
they appear as impervious to social and cultural life as the most
decontextualized and reductionist model of mind-as-matter. Repeatedly
replicating their own behaviors and responses, they act out the ideal of the
scientific method, the contours of its products, and popular stereotypes
about its practitioners. Exemplifying this model of the psyche provides the
opportunity to lay claim to moral innocence, a uniquely self-determined
identity, and a special relationship with the power and prestige of
technoscience. Such absolution, acceptance, and admiration are often rare
and precious commodities in the lives of individuals whose behavior is
frequently out of sync with the expectations of others. However, this
exemplary status comes with a cost. In particular, the aspects of their
behavior that are most machine-like come to characterize their entire being,
in the eyes of others and sometimes in their own. The facets of subjectivity –
and life experience – that are interpretive, intersubjective, and socially
contingent are at risk of dropping out of this strategic picture. Meanwhile,
the cycle of moral blame for mental disorder is perpetuated in the rhetorical
‘othering’ of psychiatric conditions, through heightening and highlighting the
opposing – and negatively valenced – characteristics of those so diagnosed.
Just as imagining people with Asperger’s syndrome as robots or cyborgs is
a useful strategy but results in a costly reduction of their experience, behavior
and social participation, envisioning neuroscience as dictating fixed, deter-
ministic sets of behaviors or life trajectories is itself a reduction of the complex
work actually carried out and knowledge produced by neuroscientists.
For example, a growing awareness of neural plasticity throughout the life-
course is increasingly upending longstanding conceptions of adult brains as
hardwired, unchanging systems (Rees, 2010; Rubin, 2009). However, such
48 ELIZABETH FEIN

reductions are metaphorically compelling and do significant social and

interpretive work, and it is worth examining more closely what, in fact, this is.
Looking at the way in which a reductionist model of Asperger mind-as-
machine was used in Brookfield to win over and protect scarce educational
resources reveals the extent to which neuroscientific discourses can be locally
adopted and adapted to serve specific and often unexpected social and
economic purposes.
More broadly, the notion that mental conditions can be divided into those
that are ‘neurochemical’ – malleable, fluid, discovered by a psychiatry deeply
reliant on psychopharmacology and amenable to its interventions – and those
that are ‘neurostructural’ – fixed and ‘‘unfixable,’’ intrinsic to personhood –
seems to be taking powerful hold. These two sets of conditions arise out of
different bodies of neurological knowledge and therefore posit very different
sorts of neurological selves, with different associated identity politics and
meaningful moral ramifications. The resonance between the behaviors of
people with each of these conditions – unpredictable but responsive in one
case, compliant but socially estranged in the other – and the ontologies
underlying the diagnostic systems within which each are classified – the fluid
and the hardwired – gives rise to a powerful and enduring complex of
intertwined meanings. It is a robust and consequential cultural model, the
twin strands of which are always already in relation to the other.

ACKNOWLEDGMENTS

The research leading to this publication was made possible by generous

support from the National Institute of Mental Health (Ruth L. Kirschstein
National Research Service Award for Individual Predoctoral Fellows,
Award #F31MH082551-02), a National Science Foundation Dissertation
Improvement Grant (Award #0823390) and a Dissertation Fieldwork Grant
from the Wenner-Gren Foundation for Research in Anthropology (Award
#7836). Its contents are solely the responsibility of the author and do not
necessarily represent the official views of awarding organizations.

REFERENCES
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders
(4th ed. text revision ed.). Washington, DC: American Psychiatric Association.
Asperger, H. (1994[1991]). Autistic psychopathy of childhood. In: U. Frith (Ed.), Autism and
Asperger syndrome. Cambridge, UK: Cambridge University Press.
Asperger’s Syndrome and the Neurostructural Self 49

Atwood, T. (2007). The complete guide to Asperger’s syndrome. London, UK: Jessica Kingsley.
Baker, T., McFall, R., & Shoham, V. (2009). Current status and future prospects of clinical
psychology: Toward a scientifically principled approach to mental and behavioral health
care. Psychological Science in the Public Interest, 9, 5–145.
Baron-Cohen, S., Richler, J., Bisarya, D., Gurunathan, N., & Wheelwright, S. (2003). The
systemizing quotient: An investigation of adults with Asperger syndrome or high-
functioning autism, and normal sex differences. Philosophical Transactions: Biological
Sciences, 358(1430), 361–374.
Carpenter-Song, E. (2009). Caught in the psychiatric net: Meanings and experiences of ADHD,
pediatric bipolar disorder, and mental health treatment among a diverse group of
families in the United States. Culture Medicine and Psychiatry, 33, 61–85.
Choudhury, S., Nagel, S. K., & Slaby, J. (2009). Critical neuroscience: Linking neuroscience
and society through critical practice. BioSocieties, 4, 61–77.
Dumit, J. (2004). Picturing personhood: Brain scans and biomedical identity. Princeton, NJ:
Princeton University Press.
Horowitz, A. V. (2002). Creating mental illness. Chicago, IL: University of Chicago Press.
Insel, T. R., & Quirion, R. (2005). Psychiatry as a clinical neuroscience discipline. Journal of the
American Medical Association, 294, 2221–2224.
Luhrmann, T. M. (2000). Of two minds: The growing disorder in American psychiatry.
New York: Alfred A. Knoph.
Martin, E. (2007). Bipolar expeditions: Mania and depression in American culture. Princeton, NJ:
Princeton University Press.
Miresco, M. J., & Kirmayer, L. J. (2006). The persistence of mind-brain dualism in psychiatric
reasoning about clinical scenarios. American Journal of Psychiatry, 163, 913–918.
Nadesan, M. (2005). Constructing autism: Unravelling the ‘truth’ and understanding the social.
New York: Routledge.
Ortega, F. (2009). The cerebral subject and the challenge of neurodiversity. BioSocieties, 4,
425–445.
Ortega, F., & Vidal, F. (2007). Mapping the cerebral subject in contemporary culture. Electronic
Journal of Communication Information and Innovations in Health, 1(2), 255–259.
Pickersgill, M. (2009). Between soma and society: Neuroscience and the ontology of
psychopathy. BioSocieties, 4, 45–60.
Rees, T. (2010). Being neurologically human today: Life and science and adult cerebral
plasticity today (an ethical analysis). American Ethnologist, 37, 150–166.
Rose, N. (2003). Neurochemical selves. Society, 41, 46–59.
Rose, N. (2007). The politics of life itself. Princeton, NJ: Princeton University Press.
Rubin, B. (2009). Changing brains: The emergence of the field of adult neurogenesis.
BioSocieties, 4, 407–424.
Solomon, O., & Bagatell, N. (2010). Autism: Rethinking the possibilities. Ethos, 38, 1–8.
Turkle, S. (2005). The second self: Computers and the human spirit. Cambridge, MA: MIT Press.
Vidal, F. (2009). Brainhood, anthropological figure of modernity. History of the Human
Sciences, 22, 5–36.
NARRATION AND
NEUROSCIENCE: ENCOUNTERING
THE SOCIAL ON THE ‘‘LAST
FRONTIER OF MEDICINE’’

Sara Shostak and Miranda Waggoner

ABSTRACT

As the neurosciences endeavor to explain increasingly complex aspects of

human biology and behavior, domains of human life that can only be
assessed in social interaction become ever more important, if formally
unacknowledged, dimensions of scientific research. Drawing on semi-
structured interviews with 14 researchers who study epilepsy genetics, this
chapter examines how neuroscientists encounter ‘the social.’ We find that
at the beginning of their careers, researchers are intrigued by epilepsy as a
disease of the brain and a means of exploring ‘‘the last frontier in
medicine.’’ However, as they begin their investigations, the importance of
building social relationships, gleaning the subtleties of seizure experience
available only in patient narratives, and engaging with families in the field
quickly emerge as important parts of epilepsy genetics research. Some
researchers hope for and work toward a day when new techniques or
models will allow them to forgo the time consuming, painstaking, and
often invisible work of gathering detailed histories, combing through
patient narratives, and traveling to field sites to meet with families.

Sociological Reflections on the Neurosciences

Advances in Medical Sociology, Volume 13, 51–74
Copyright r 2011 by Emerald Group Publishing Limited
All rights of reproduction in any form reserved
ISSN: 1057-6290/doi:10.1108/S1057-6290(2011)0000013007
51
52 SARA SHOSTAK AND MIRANDA WAGGONER

However, these accounts make clear that, at the current moment, much of
‘‘the molecular work’’ of epilepsy genetics research is built upon social
interactions, relationships, and experiences.

As powerfully demonstrated by historians of medicine, diseases are not

stable objects (Rosenberg, 1992, 2007). Rather, they represent multiple,
different entities that ‘‘go under a single name’’ across time and place (Mol,
2002, p. 6). How we understand the causes, symptoms, and consequences of
diseases changes with the practices in and through which they are known, in
the clinic, in the laboratory, and in clinical research – the ‘‘critical
borderland between science and medicine’’ (Lindee, 2005, p. 86). As such,
understanding disease requires consideration of the ‘‘scientific core of
medicine’’ (Timmermans, 2006, p. 27), including changes in scientific
research, and their translation into clinical practices, categories of disease,
and kinds of patients (Casper & Berg, 1995; Clarke, Fishman, Fosket,
Mamo, & Shim, 2003; Rabinow & Rose, 2006).
Few diseases demonstrate this variability as vividly as epilepsy. What
epilepsy is and whether it can be inherited have been matters of debate since
at least 400 B.C., the approximate date of On the Sacred Disease, a medical
text that is part of the Hippocratic corpus (Temkin, 1971). In the many
centuries following, epilepsy has been defined as a ‘falling sickness,’ a
supernatural event or form of spirit possession, an example of moral and
physical degeneracy, and, more recently, a neurological condition (Dwyer,
1992). Likewise, physicians and scientists have articulated varying notions
of epilepsy’s heritability or non-heritability, depending on the concepts,
methodologies, and data available to them. Historically, such culturally
loaded definitions of epilepsy have had devastating consequences for people
living with the condition, as eugenic concerns about degeneracy served as a
rationale for institutionalization, prohibitions on marriage and immigra-
tion, and forced sterilization (Dwyer, 1992; Schneider & Conrad, 1983;
Temkin, 1971).
Today, epilepsy is understood to be one of the most common neurological
disorders, affecting approximately three percent of individuals at sometime
in their lives (Hauser, Annegers, & Kurland, 1991; Hauser, Annegers, &
Rocca, 1996). Epilepsy is broadly defined by recurrent (Z2) unprovoked
seizures, that is, seizures occurring in the absence of an acute structural or
metabolic central nervous system (CNS) insult (Hauser et al., 1991).
However, epilepsy is so clinically heterogeneous that it is usually viewed as a
collection of different disorders (‘epilepsy syndromes’) with distinct
etiologies (Beghi, 2009; Berg et al., 2010). Seizure manifestations vary from
Narration and Neuroscience 53

brief lapses in consciousness to full-blown tonic–clonic convulsions.

Associated sensory, motor, psychic, and other symptoms are also extremely
variable (Choi et al., 2006). In the past three decades, genetics has become a
central focus of epilepsy research, and genetic testing for specific epilepsy
syndromes is increasingly available (Shostak & Ottman, 2006).
In recent years, neuroscience and genetics have emerged as ascendant
ways of understanding human health and illness, personality, and
subjectivity (Atkinson, Glasner, & Greenslade, 2007; Gibbon & Novas,
2008; Rabinow & Rose, 2006; Rose, 1999). However, the relationship
between these sciences and clinical practice remains ‘‘uncertain’’ (Cullen &
Cohn, 2006 in Pickersgill, 2009, p. 46). In the case of neuroscience, this
uncertainty derives, in part, from the location of the subjects of neuroscience
‘‘between soma and society’’ (Pickersgill, 2009) such that, in contrast to the
simple determinism and reductionism often ascribed to the contemporary
life sciences (Duster, 2006), neuroscientists are confronted with environ-
mental causes and social processes not bounded within the human body.
Epilepsy exemplifies this complexity. Most forms of the condition are
inconsistent with Mendelian modes of inheritance and most people with
epilepsy have no affected relatives, indicating a key role for ‘gene–
environment interactions’ in the etiology of the disorder (Ottman, 2005).
Moreover, relations between genotype and phenotype are not at all
straightforward. Rather, they are characterized by both locus heterogeneity,
in which a single epilepsy syndrome is caused by different genes in different
families, and variable expressivity, in which a mutation in a single gene can
produce different epilepsy phenotypes in different individuals (Shostak &
Ottman, 2006). As multiple disciplines turn to gene–environment interaction
as a way of theorizing, investigating, and possibly intervening in complex
traits (Rutter, Moffit, & Caspi, 2006; Schwartz & Collins, 2007; Shostak,
2003; Tutton, Kaye, & Hoeyer, 2004), the betwixt and betweenness of
neuroscience in general – and research on epilepsy genetics in particular –
offers an important opportunity for understanding how ‘the social’ is
encountered and articulated in research practices in the contemporary life
sciences.
How scientists conceptualize and operationalize social and environmental
factors in their research varies tremendously, ranging from the inner content
of cells (i.e., the environment of the gene) to socioeconomic status (i.e., the
environment of individuals and communities) and everything in between
(endogenous hormonal profiles, measures of psychosocial stress, etc.)
(Freese & Shostak, 2009). Sociologists have argued that the inclusion of
such factors is not itself evidence of ontological complexity in scientific
54 SARA SHOSTAK AND MIRANDA WAGGONER

research; rather, they note that scientists may deploy a ‘‘narrative of

enlightened geneticization’’ in which genetic explanations are privileged over
environmental explanations, positioning genetic causes as more easily
specified, researched, and targeted for intervention (Hedgecoe, 2001; see also
Horwitz, 2005). At the same time, sociologists have also been critical of the
‘undertheorized’ definition of environmental factors and social contexts in
social scientific research focused on gene–environment interaction (Perrin &
Lee, 2007).
Insofar as much of our understanding of how scientists understand ‘the
social’ or ‘the environment’ comes from analyses of articles published in the
peer-reviewed literature (see, e.g., Hedgecoe, 2001; Kerr, 2005; Miller,
Ahern, Smith, & Harvey, 2006; Perrin & Lee, 2007; Racine, Waldman,
Rosenberg, & Illes, 2010), what remains unexamined are scientists’ first-
hand encounters with and perspectives on social contexts, processes, and
interactions in the clinical, laboratory, and research settings in which
diseases become known. Following Gilbert and Mulkay (1984), we
distinguish scientists’ ‘contingent,’ or informal, discourse from the more
formal ‘empirical’ repertoire deployed in their published articles. Here, we
analyze scientists’ contingent repertoire to examine how they describe ‘the
social’ in the context of their research on the genetics of epilepsy (cf.,
Hedgecoe, 2001). Our primary focus is not on social factors in explanations
of disease etiology, but rather on scientists’ experiences and understandings
of epilepsy as a social phenomenon, and the social relationships and
interactions that are inextricable components of their research (see also
Cohn, 2008).
Our data come from semi-structured interviews with scientists and clinical
researchers (n ¼ 14). The analysis begins with their accounts of why they
chose to do research on epilepsy. While social concerns appear in these
narratives (primarily as awareness of the suffering of people with seizure
disorders), respondents identify their interest in the brain and how it can be
understood by studying epilepsy as their primary motivations for focusing
their research and practice on epilepsy. Nonetheless, many scientists and
clinical researchers report having quickly discovered that understanding
epilepsy genetics requires that they pay close attention to the narratives of
people with epilepsy, develop relationships with people with epilepsy and
their family members, and cultivate an appreciation of ‘‘the subtleties’’
(Interview 11) of this condition as it is experienced by people who live with
it. As such, the specific discourses of scientists studying epilepsy genetics
offer a vista onto how the social may be encountered in contemporary
neuroscientific research.
Narration and Neuroscience 55

DIAGNOSING DISEASE: SIGNS, SYMPTOMS,

AND NARRATIVES

As we describe below, this analysis is based on interviews with both

laboratory-based and clinical researchers who study epilepsy genetics.
Clinical research likely represents a special case for examining how scientists
and clinicians encounter the social in their investigations, since it requires
the skillful combination of research and medical treatment, such that the
priorities of ‘the bench’ interact in new and often complicated ways with ‘the
bedside’ (Joffe & Miller, 2008; Miller & Rosenstein, 2003; Ponder et al.,
2008; Taylor & Kelner, 1987). These combinations, and the unique ethical
issues they raise, require dialogue between investigators and potential study
participants about the meaning of their participation in research (Epstein,
2008; Morris, Armstrong, & Balmer, 2009), including uncertainties
regarding possible outcomes (Wainwright, Michael, & Williams, 2009).
Likewise, the focus of these researchers on genetics gives increased salience
to family stories about the genetic origins and experience of disease (Latimer
et al., 2006; Lindee, 2005).
Despite these specificities, clinical research on epilepsy genetics shares
many features with other forms of biomedical research. Most centrally, it
relies on the definition of a disease phenotype, which, in turn, hinges on
processes of clinical diagnosis. Recent writing in the history of medicine
describes transformations in the diagnostic process, especially the declining
importance of ‘the symptom’ as a marker of patient experience in favor of
the purportedly more objective ‘sign’, as observed by the physician. As a
consequence, disease is diagnosed at ever ‘deeper’ (e.g., cellular and
molecular) levels (Aronowitz, 2001, p. 803; see also Armstrong, 1995). In
the United States, the divide between symptoms and signs is reinforced by
professional medical culture that sometimes treats patient narratives with
skepticism (Anspach, 1988), especially as physicians actively work to
accumulate data to establish an ‘‘organized illness’’ (Balint, 1957/2000,
p. 18). Organizing symptoms in order to define disease involves exchange
between patients and physicians and the standardization of patient
narratives in the temporal space of clinical practice (Timmermans &
Almeling, 2009; Timmermans & Berg, 1997).
Standardization work in the neurosciences, which aims especially to establish
objectivity in diagnosis, may diminish the perceived salience of the more
subjective aspects of the experience of illness (Beaulieu, 2001). However,
standardized classifications do not exist in ‘‘pure space’’ (Bowker & Star, 1999,
56 SARA SHOSTAK AND MIRANDA WAGGONER

p. 168). Indeed, medical sociologists have long focused on the diagnostic

process as a site for exploring how social and medical factors interact in disease
definition, often irrespective of the state of knowledge around the biological
basis of disease (Brown, 1995; Conrad & Schneider, 1992; Zavestoski et al.,
2004). This research demonstrates that diagnostic technologies do not always
translate into prognostic certainty (Anspach, 1987; Joyce, 2008), that the
construction of diagnosis and disease may derive from depictions of moral and
social disorders (Armstrong, 2003), and that diagnoses get crafted even amid
nonspecific symptomatology and without perfect diagnostic tests (Aronowitz,
1991). Moreover, for some diseases, including epilepsy, ‘‘an ideal type is
difficult to conjure’’ (Bowker & Star, 1999, p. 199); accordingly, diagnoses
based largely on clinical interaction and patients’ reports of symptoms still
maintain a significant space in clinical practice (Aronowitz, 2001).
For the past three decades, medical sociologists and anthropologists have
explored how the objects of the medical world are constituted and engaged
through narrative practices (Garro & Mattingly, 2000), the role of
narratives in the clinical encounter (Greenhalgh, 2001; Hunt, 1994;
Mattingly, 1991, 1994), and the ways in which medical students learn to
translate patient accounts into clinical and diagnostic categories (Anspach,
1987, 1988). A central finding of this research is that, in the United States,
medicine tends to construct the objects of therapeutic attention as
ahistorical and nonsocial, even as ‘‘patients experience ‘sickness’ in the
context of life narratives, the lived body, and diverse forms of social
relations and power structures’’ (Good & Good, 2000, p. 51). These
differences may lead to misunderstanding and conflict between practitioners
and patients, with dire implications for both treatment and healing
(Kleinman, 1988). Current initiatives in medical schools endeavor to
develop the ‘‘narrative competence’’ of clinicians, that is, ‘‘the ability to
acknowledge, absorb, interpret, and act on the stories and plights of others’’
(Charon, 2001, p. 1897). However, there are comparatively few studies of
how narrative operates in either laboratory or clinical research.
Sociological work has previously examined how ‘the genetic’ emerges
from the categorical and classificatory work of clinical practice (Latimer
et al., 2006). Our analysis considers how social contexts, processes, and
interactions emerge and are encountered in clinical and scientific research on
epilepsy genetics. Specifically, we ask the following questions: (1) What
motivates scientists and clinicians to focus on epilepsy? (2) What are their
actual experiences of doing research on epilepsy, in general, and epilepsy
genetics, in particular? (3) How do scientists perceive and respond to the
complexities of epilepsy, as both a biological and social phenomenon?
Narration and Neuroscience 57

DATA AND METHODS

To address these questions, we draw on the accounts of scientists and

clinicians who study epilepsy genetics and whose clinical practices focus on
people with epilepsy. The interviews upon which this analysis is based were
conducted as part of a larger study on the social, ethical, and political
implications of research on the genetics of epilepsy. The sample for the
broader study included people with epilepsy and their family members,
clinicians, and scientists who study epilepsy. Scientists and clinical
researchers (n ¼ 14) were selected from a review of the peer-reviewed
literature and, once interviews began, via snowball sampling. We conducted
interviews with scientists and clinical researchers with backgrounds in
neurology, neuroscience, clinical genetics, genetic epidemiology, and
medicine (often specializing in epileptology). All scientists interviewed are
involved in some form of neurogenetics research, and most in the group
both conduct research and see patients. The sample is broadly international,
including respondents from the United States, South America, Europe, and
Australia.
The interviews were semi-structured and varied in length from
15 minutes to nearly 2 hours; the modal interview length was 60 minutes.
Interviews were conducted in person whenever possible; interviews with
scientists in South America, Europe, and Australia were conducted via
telephone. The goal of the interviews was to elicit such talk that would
enable us to ‘see’ epilepsy from the perspective of the respondent. Both
scientists and clinical researchers were asked to describe how they first
became aware of epilepsy, what makes it a compelling research focus, what
they consider their greatest accomplishments to date, and to explain the
trajectory of their research. When interviewing practicing clinicians, we
also asked questions about their experiences of providing care to people
with epilepsy.
The interviews were analyzed using the principles of grounded theory and
its techniques of coding and constant comparison (Charmaz, 2006; Clarke,
2005; Glaser & Strauss, 1967). In the past two decades, grounded theory has
emerged as ‘‘a normative methodological standard in the sense of a
paradigmatic set of scientific assumptions proclaiming how qualitative
analysis should be done’’ (Timmermans & Tavory, 2007, p. 466).
Additionally, our approach is ‘abductive,’ an approach first described in
the writings of pragmatist philosopher Charles S. Pierce, and referring to
‘‘an inferential creative process, producing new hypotheses and theories
based on surprising research evidence’’ (Timmermans & Tavory, n.d.).
58 SARA SHOSTAK AND MIRANDA WAGGONER

UNCHARTED TERRITORIES: THE BIOLOGICAL AND

THE SOCIAL IN EPILEPSY GENETICS

At First: Motivations

In our respondents’ accounts, epilepsy and the brain appear first and
foremost as biological phenomena. Researchers speak of the brain as a
frontier to be explored, a mystery to be solved, and as a model for
understanding complex biological processes. However, even at the early
moments of their careers and commitments to studying epilepsy, researchers
become aware of and compelled by epilepsy as a social experience.
Specifically, scientists and clinicians reported three primary motivations for
their decisions to focus on epilepsy, with most researchers noting more than
one motivation.
First, researchers perceive neuroscience as the ‘final frontier of
medicine,’ offering important opportunities for both scientific discovery
and career advancement. One respondent explained: ‘‘Basically I had
decided to do neurology because [y] I always thought it was an interesting
area, kind of the last frontier in medicine’’1 (Interview 1). Another
respondent also used this phrasing: ‘‘I had always been interested in the
brain. I thought of it as the final frontier’’ (Interview 10). A clinical
researcher explained that early on it was clear that epilepsy genetics ‘‘really
was an untapped area. So we were sort of entering something which people
really didn’t know very much about’’ (Interview 11). Scientists have
described the brain as a ‘‘chief biomedical frontier’’ since the 1890s (Vidal,
2009, p. 7; see also Lakoff, 2005). More recently, genetics and genomics have
been described as key ‘‘frontiers’’ of biomedical research, a metaphor that
not only appears in scientists’ writings (e.g., Kumar, 2007), but has been
institutionalized in the names of genomics research centers.2 As we discuss
below, the frontier metaphor has material implications for scientists’
careers.
Researchers also talked about epilepsy and neuroscience as offering the
possibility of solving ‘‘great mysteries’’ (Interview 1) about both biology and
personhood. One clinical researcher, for instance, stated that ‘‘the greatest
mysteries of the body are in the brain.’’ He further suggested that among
those mysteries is the nature of personhood itself: ‘‘the brain [is] the center
of who a person is’’ (Interview 1). Respondents also reported being
compelled by the complexities of the brain, commenting that ‘‘the brain is a
fascinating organ [y] as much as one third of all genes that exist in the
human genome are expressed in the brain [y] there’s a lot of complicated
Narration and Neuroscience 59

genetics [y] a lot of things to study there’’ (Interview 13). Such comments
highlight researchers’ focus on the brain as a biological entity, as well as
their ‘‘technosomatic’’ approach to subjectivity (Pickersgill, 2009, p. 45).
Second, and related, researchers describe having chosen to focus on epilepsy
because it offers a model for understanding brain function. One respondent
explained epilepsy as ‘‘doing something that our brains normally do, only more
so [y] There are neurons firing and talking to other neurons, but just doing a
bit too much of it at the wrong time’’ (Interview 13). Epilepsy thus offers a
means of understanding both the ‘‘normal’’ and the ‘‘pathological’’
(Canguilhem, 1966/1998). As elaborated by a clinical researcher:

Epilepsy is so interesting because [you] are trying to dissect genetic factors that control
normality as well as the development of epilepsy y it’s one of the disorders of the human
brain where you not only have negative effects, but also positive effects. It shows both
sides of our functioning [y] Many central nervous system disorders induce a lack of
something you were able to do beforehand [y] but in epilepsy, it can be both ways. You
can be deaf, but you can also have auditory signs. You can be blind, but you can also
have visual hallucinations. So it is that complex picture of epilepsy which makes epilepsy
such a prototype disease of the human brain [y] and that’s actually what is so
interesting about it.3 (Interview 7)

The desire to figure out the larger puzzles in biology through studying
epilepsy genetics commonly was foregrounded in respondents’ narratives:

What I’d really like to do is discover a novel biological principle. Not just some
important facts, but an actual principle that is more broadly applicable [y] I’d like to
find something that applies to say the brain function of all mammals or, you know,
something like that. Because I think those are the kind[s] of things that have the greatest
impact [y] when a lot of different people doing different kinds of research can benefit
from your discovery. (Interview 13)

For these researchers, epilepsy is a prototype or a model that is not only

compelling on its own terms, but also as a means of understanding brain
function more broadly.
The mysteries and complexities of the brain have direct implications for
researchers’ careers, including grant awards and decisions regarding
promotion and tenure. As one study participant stated, ‘‘It’s a great place
to get started [y] you can really carve out your own area’’ (Interview 13).
Carving out one’s own piece of the ‘‘frontier’’ can open up new possibilities
for funding, which, in turn, reinforces commitment to research on the
genetics of epilepsy. A clinical researcher explained, ‘‘I agreed [to work in
this area] and that grant got funded and started really [my] interest in trying
to study the genetics of epilepsy’’ (Interview 4). Indeed, in the current
60 SARA SHOSTAK AND MIRANDA WAGGONER

context of competitive research funding, the frontier metaphor carries

important implications, as Prasad observes, ‘‘‘research in a frontier area of
science’ is perhaps the most important criterion for funding decisions’’
(2005, p. 478). Researchers perceive genetics research as particularly valued
within the sciences, as this respondent described: ‘‘I knew how important it
was to find a gene. I mean, it’s like the Holy Grail of science [y] It’s our
Holy Grail to find a gene that influences risk for a disease’’ (Interview 10).
While respondents were clearly aware of the possibilities for scientific
discovery and professional advancement afforded to them by studying the
‘‘final frontier,’’ they were also attuned to epilepsy as a source of human
suffering. For just over a quarter of these respondents, alleviating human
suffering was what first motivated them to focus their research and clinical
practice on epilepsy. For example, a few participants recounted that as
children they had been emotionally affected by seeing or knowing someone
with epilepsy, which sparked an early interest in the disease. One respondent
told a story about witnessing seizures while working for a summer hospital
program: ‘‘I have that memory and somehow I think there’s sort of an
emotional connection that was the beginning of this lifelong interest’’
(Interview 6). More commonly, however, interest in studying epilepsy
emerged during their training or in the early days of their research efforts.
As a study participant explained:

When I started working that year with the physicians and the neurologist, I got an
appreciation for exactly what epilepsy was and how really devastating it is for the people
who suffer from it. So for me, that was [y] the double whammy: interesting, scientific
puzzle and really debilitating disease. (Interview 4)

Another clinical researcher described epilepsy as ‘‘a disease that is very

common, devastating, and with severe social implications’’ (Interview 9),
which enjoined his desire to help people with epilepsy through genetic
research. Similarly, one respondent commented that epilepsy is unique, in
comparison to other conditions such as asthma or hypertension, because
people ‘‘are very much defined by it’’ (Interview 5).
However, alongside severity, the possibility of effectively treating epilepsy
was identified by respondents as a compelling aspect of the disease,
especially as compared to their perceptions of other neurological conditions.
For example, a respondent commented that she chose to focus her practice
on epilepsy because it ‘‘fit’’ with her personal desire to offer effective
treatment: ‘‘the one area of neurology that wasn’t depressing to me was
epilepsy because this was the neurologic disease where people where
otherwise often young and usually healthy and [y] they could be treated’’
Narration and Neuroscience 61

(Interview 1). Study participants describe as ‘‘heart wrenching’’ the

moments in which their patients confide in them about the challenges of
living with uncontrolled seizures (Interview 5).
While epilepsy and the brain appear initially as purely biological
phenomena in these accounts, awareness of the social dimensions of
epilepsy – including the social suffering of people living with seizures and the
experience of working with individuals with a ‘‘treatable’’ condition – are
important motivations for researchers and clinicians whose practices focus
on epilepsy. Once they begin to do epilepsy genetics research, new and
challenging dimensions of epilepsy as both a biological and social
phenomenon become relevant and, increasingly, are intertwined.

In Practice: Subtleties and Social Relations on the Last Frontier

When asked about the challenges they face in studying epilepsy genetics,
clinical researchers highlight the episodic nature of seizures, the hetero-
geneity of epilepsy, and the difficulty this poses to defining phenotypes or
making diagnoses. For the most part, patients in the examination room are
‘‘neurologically normal’’ (Interview 1). Consequently, scientists and
clinicians cannot rely simply on biological signs but rather depend on
patients’ narratives for elucidating the subtleties of their seizures, and the
auras that may precede them. Likewise, researchers report that interacting
with multiple members of a family in community settings has been critical to
unraveling epilepsy genetics. As such, for researchers studying epilepsy and
its genetic underpinnings – in their idiom, explorers on the last frontier of
medicine – there is no substitute for the kinds of narratives and relationships
available only in the context of sustained and trusting social relationships.
Contributing to the challenge of diagnosing epilepsy, and defining specific
epilepsy phenotypes, is the fact that scientists and clinicians often do not
observe seizures directly. Rather, they are reliant on diagnostic technologies,
such as EEGs, which produce results that are often ‘‘normal’’ unless the
person being evaluated is having a seizure while attached to the EEG, and
on the ‘‘subtleties’’ (Interview 11) present in patient descriptions of their
seizures. A clinical researcher explained that because the EEG ‘‘will tell us
whether it is epilepsy’’ often ‘‘patients remain here until one [a seizure]
occurs’’ and clinicians do ‘‘whatever we can do to encourage a seizure to
happen’’ (Interview 1). Nonetheless, as she continued,
the process with epilepsy more than with most diseases is about communication y I
sometimes have people who aren’t able to give a good description of what happens to
62 SARA SHOSTAK AND MIRANDA WAGGONER

them. Either because they don’t remember it or because they haven’t really paid attention
to it or they haven’t had that many [seizures]. Or they’re just not good at describing things.
So that’s probably the biggest challenge, getting a good description. Usually it’s not a
problem, but it can be. And if you can’t get that, it’s hard to even get started. (Interview 1)

Moreover, as a clinical researcher explained, making ‘‘the right diagnosis’’ is

essential to guaranteeing that they ‘‘don’t use the wrong treatment’’
(Interview 11). This is important because for people with specific types of
epilepsy, seizures may worsen if they take particular antiseizure medications.
Moreover, as noted above, epilepsy is so clinically heterogeneous that
many researchers refer to it as a collection of different disorders (‘epilepsy
syndromes’) with distinct etiologies (Berg et al., 2010). As one respondent
stated, ‘‘Epilepsy isn’t one disease. It’s probably hundreds [y] maybe
thousands, [with] all sorts of different genetic mechanisms’’ (Interview 13).
These variations are significant for shaping the experiences of living with
epilepsy; as noted by a clinical researcher, much ‘‘depends on [y] the type
of epilepsy they have as well and the number of seizures’’ (Interview 5).
Clinical heterogeneity poses a significant challenge to epilepsy genetics
research. As one study participant stated, the ‘‘biggest problem’’ he faces is
‘‘the phenotyping’’ (Interview 7). He contrasted the challenge of phenotyp-
ing with the relative ease of genotyping, noting that while ‘‘it is no problem
to get your genotypes,’’ in order to generate accurate data about phenotypes
‘‘you need very good doctors [y] And there is a shortage of time, and
money, and doctors to do that work. It requires enormous resources to have
really an accurate phenotyping’’ (Interview 7). Moreover, as another
respondent noted, gathering pedigrees and clinical information is both time
consuming and often ‘‘invisible work’’ (Star, 1991, p. 275):
it’s a very time consuming work, going and getting information on families and pedigrees
and collecting the samples and making sure all the clinical information is correct [andy]
it’s usually not rewarded because you cannot publish this. (Interview 14)

Another study participant bemoaned the ‘‘incredible variation amongst the

neurologists about the standard of phenotyping’’ (Interview 11). This is a
significant challenge to epilepsy genetics, as inaccurate characterization of
phenotypes can severely undermine the possibility of identifying genes
associated with epilepsy. As one respondent stated succinctly, ‘‘if you don’t
have the clinical information available [y] there’s no way of doing the
molecular work’’ (Interview 14) (cf., Star, 1985).
Getting fine-grained descriptions of the symptoms of epilepsy thus is a
priority for both clinicians and researchers. The ‘‘subtleties’’ in symptoms
are the key to accurate diagnosis and/or phenotyping, and according to one
Narration and Neuroscience 63

respondent: ‘‘It’s a real problem [y] people thinking the genes define things
rather than the clinical history’’ (Interview 11). The subtleties of epilepsy
symptomatology have been central to identifying hereditary epilepsy
syndromes, such as the mutation in LGI1 associated with autosomal
dominant partial epilepsy with auditory features (ADPEAF) and the
mutation in ATP1A2 associated with both benign familial neonatal infantile
seizures and familial hemiplegic migraine. Indeed, one very accomplished
scientist commented that the aspect of her research in which she takes the
most pride is having built ‘‘a whole machinery for standardized collection’’
of clinical data to support accurate phenotyping (Interview 10).
The researchers we interviewed emphasized that building relationships
with people with epilepsy and their family members, learning their stories,
and being trusted with their secrets are irreplaceable components of epilepsy
genetics. As one respondent stated simply, ‘‘you have to engage people to
get the information to make the diagnosis [y] and that then leads to
hypotheses about inheritance and genetics.’’ Further, the quality of these
interactions matters; ‘‘getting the symptomatology correct’’ and making the
‘‘right diagnosis’’ can be ‘‘all about how you interact’’ (Interview 11).
Another clinical researcher emphasized the importance of not rushing to get
to his ‘‘agenda’’ but rather ‘‘establish[ing] the foundation for a long-term
relationship’’ as a key component of his interactions with people with
epilepsy (Interview 8). This is unquestionably a time-consuming work and
poses special challenges to researchers who are splitting their time between
the lab and the clinic, as this respondent described:
my follow ups are for one-half an hour y what I’ve done is I’ve really confined my clinical
time to two half days a week [y] Those are long days. I have [some patientsy], you sit
there for over one hour and still [do] not touch the surface of the issues. (Interview 5)

Similarly, a respondent emphasized that seeing patients ‘‘in a prospective

way,’’ ‘getting the patients to collaborate with you,’ and maintaining
relationships over time is the only way to get ‘‘good clinical information’’
about epilepsy:
I think following the families [andy] the patients prospectively is also very important y
sometimes people that are not used to the phenotype, epilepsy, and do molecular work in
other disorders, they don’t appreciate the importance of going back and seeing the
patients again [y] Because they assume that there’s a closed diagnosis. [As ify] the
patients don’t have epilepsy and that’s it. Forever. And we know that with epilepsy it’s
not like that. (Interview 14)

Again, the biological complexity of epilepsy shapes the importance of social

relationships and interactions in epilepsy research.
64 SARA SHOSTAK AND MIRANDA WAGGONER

Likewise, genetics research, and especially linkage analyses that rely on

gathering data across generations of families, implicates the social in unique
ways. Researchers describe taking field trips far from their laboratories and
offices in order to meet with patients and family members collectively
in their communities. One scientist recounted one such field trip that
contributed significantly to developing the pedigree of a family affected by
autosomal dominant nocturnal frontal lobe epilepsy (ADNFLE). In this
case, going out to meet with the family in their community provided an
opportunity for a researcher to talk privately with the family matriarch, who
previously had insisted that she had never had a seizure. However, as she
recounted, ‘‘as soon as I was alone with her, she told me that she had had
some attacks, [y] when she was in the bed at night.’’4
Second, meeting in community settings with family members has
contributed to greater trust between researchers and families and, in turn,
to disclosures regarding ‘‘skeletons in the cupboard’’ – such as consangui-
neous marriages in generations past – that are important to understanding
patterns of inheritance in a family. Often, these ‘‘skeletons’’ are not
disclosed immediately, but in follow-up conversations following researchers’
field trips, suggesting that these personal visits build trust between
researchers and family members.
Moreover, interacting with multiple family members produces unique
insights for scientists. As one respondent described, ‘‘when you see everyone
in the family and they all say the same thing, you can really piece something
together.’’ Especially in the case of relatively rare epilepsy phenotypes with
subtle symptoms, such as ADPEAF (in which seizures are preceded by
auditory auras) and ADNFLE (in which seizures often include the feeling of
having difficulty breathing), interacting with a large number of affected
individuals has helped define specific phenotypes. This contributes to the
accurate diagnosis of rare epilepsy phenotypes when researchers have
returned to their clinics, as well as more refined foci for genetic research.
Indeed, respondents emphasized the importance of their travel between the
field, the lab, and ‘‘what we do every day in the clinic.’’

The Next Generation of Neurogenetics

The researchers we interviewed offered divergent visions of the role of the

social in the future of research in epilepsy genetics. Some position the
gathering of detailed narratives and developing social relationships as a
cumbersome and time-consuming process to be overcome by the development
Narration and Neuroscience 65

of better interview protocols, mouse models, or the molecularization of

disease phenotypes. However, others highlight their efforts to train a next
generation of researchers to be able to work collaboratively with patients
and their families.
As we described above, the challenges of interacting with patients, earning
their trust, and getting the information necessary to accurately define the
phenotype has motivated researchers to build interview ‘‘machinery’’ to
standardize the collection of clinical data and family pedigrees (Interview 10).
Similarly, a respondent noted that the myriad biological complexities of
epilepsy, and the lengthy interactive social interactions they demand, motivate
his efforts to develop animal models for studying epilepsy genetics:

A lot of labor intensive energy goes into collect[ing] samples from families where epilepsy
is clearly prevalent. And you know, that’s really difficult work, so obviously you’d like to
try to have an animal model that can facilitate the research. So rather than look at [y]
all 30,000 genes in a human and try to figure out which ones are some how related to
epilepsy by linkage in large families [ywhich] takes decades to do really. You can push
that further, faster if you have animal models. (Interview 4)

Another researcher allowed that while currently ‘‘the tools we use to make
this determination [diagnosis] are entirely based on interacting with the
patient and the family [y] if there was some other more objective way of
gathering that information, that would be terrific’’ (Interview 8). Put
differently, it is clear that some researchers would be happy to minimize the
time given to the labor-intensive work of carefully building relationships,
interacting with families, taking ‘‘field trips,’’ and gathering the clinical
diagnoses that currently comprise ‘‘the best information we have to go on at
the moment’’ (Interview 8) in order to correctly define epilepsy phenotypes.
In essence, they seek to reduce the social dimensions of their work.
This perspective is well represented in recent publications that imagine the
future of epilepsy research and treatment. For example, one author laments
the field’s ongoing reliance on ‘‘expert opinion and individual judgment’’ in
the diagnostic process, despite efforts to develop ‘‘objective methods’’ for
identifying epilepsy syndromes (Beghi, 2009, p. 8). In such accounts, genetic
and neuroimaging studies (Beghi, 2009; Zara & Bianchi, 2009) and
neuropathology (Meencke, 2009) are positioned as promising a means of
generating more objective scientific principles for diagnosis and treatment.
The role of social interactions in neuroscientific research is deleted in these
accounts (Cohn, 2008).
However, while some researchers seek more ‘‘standardized’’ or ‘‘objective’’
methods of doing neurogenetics research, others are seeking to train a
66 SARA SHOSTAK AND MIRANDA WAGGONER

next generation of researchers who can take in ‘‘the subtleties’’ of patient

narratives and build trusting relationships with people with epilepsy and their
family members. As one researcher noted, even ‘‘very bright girls with science
degrees in genetics’’ (Interview 11) might miss the subtleties of a patient’s
narrative or a family’s similarities, unless they learn how to engage with
patients and families in the field and over time. Training new researchers thus
includes sensitizing them to how to interact with families and to ‘‘give back’’ to
study participants: ‘‘I spend fifty percent of every research interaction giving
back, and I try and teach the people who work under me to do that’’ (Interview
11). Likewise, while clinical researchers describe engaging with patients and
families as ‘‘painstaking’’ work, they also try to convey to their trainees the
excitement of the process and the potential for ‘‘making a difference’’ in the
lives of people with epilepsy. In these ways, epilepsy genetics researchers play a
role in maintaining a place for social interaction and narrative encounters as
part of efforts to unravel the mysteries of the brain. However, while this more
social vision of the future is available in scientists’ contingent repertoires, the
empirical repertoire emphasizes a future of epilepsy genetics in which
advancements in science and technology make diagnosis and treatment ever
more ‘‘objective,’’ thereby reducing dependence on social relationships and
individual narratives.

CONCLUSIONS

Medical sociologists recently have highlighted the importance of research

that pays close attention to the specificities of diseases, including biological
variations, and their consequences for the treatment options, illness
trajectories, and social experiences of affected individuals (Timmermans &
Haas, 2008). Engaging analytically with diseases as biological phenomena is
a potential corrective to what has been described as sociology’s ‘‘biophobia’’
(in Freese, Jui-Chung Allen, & Wade, 2003, p. 234) and offers the possibility
of strengthening sociology’s theoretical and empirical engagements with
the life sciences (e.g., Bearman, 2008; Choudhury, Nagel, & Slaby, 2009;
Freese & Shostak, 2009). In this chapter, we demonstrate that specific
biological characteristics of epilepsy not only are essential to understanding
the practices of epilepsy genetics research, but also play a role in how
researchers encounter and respond to the social on the final frontier of
medicine.
From the beginning of their careers, researchers conceptualize epilepsy as
both a disease of the brain – with specific possibilities for advancing
Narration and Neuroscience 67

scientific understanding and individuals’ careers – and as a social experience.

However, as researchers begin to study epilepsy, and interact with patients
and their families, the importance of building social relationships, gleaning
the subtleties of seizure experience available only in patient narratives, and
engaging with families, often in ‘‘the field,’’ emerges as important parts of
neurogenetic investigation. To a significant degree, these social interactions
are critical because of specific biological and genetic characteristics of
epilepsy, including both the many varied forms of seizures and their
symptoms and the complex relationships between genotype and phenotype.
To be sure, some neurogenetics researchers hope for and work toward a day
when standardized questionnaires or animal models will allow them to forgo
the time consuming, painstaking, and often invisible work of gathering
detailed histories, combing through patient narratives, and traveling to field
sites to meet with families. However, they make clear that, at the current
moment, ‘‘the molecular work’’ depends on social interactions, relation-
ships, and experiences.
We recognize that the price of focusing analysis on the specific
characteristics of a disease is generalizability (cf., Timmermans & Haas,
2008, p. 664). To wit, our analysis of epilepsy genetics researchers cannot be
taken to represent the neurosciences more broadly. In particular, we would
expect that in research on less clinically heterogeneous neurological
conditions there would be less emphasis on attending carefully to the
subtleties of patient narratives. Likewise, we would expect that research less
dependent on gathering data on family histories might not demand that
investigators attend so closely to social contexts, relationships, and in-
teractions. However, more broadly, the challenges of understanding gene–
environment interactions and relationships between genotype and phenotype
are not unique to epilepsy; rather, they are characteristic of myriad complex
conditions – such as asthma, autism, cancer, heart disease, and mental
illnesses – that are increasingly the focus of genetic research (Schwartz &
Collins, 2007). Clearly, these dynamics could be explored in the context of
other diseases, thereby providing both a more robust basis for generalization
and a more fine-grained sociological understanding of heterogeneity within
the life sciences, and its implications for how we understand health and
illness.
At the same time, our analysis suggests that neurogenetics research,
perhaps especially when it begins with linkage analysis, has a paradoxical
effect. While genetics research, in general, focuses scientific investigation
inside the human body and to the molecular level (Shostak, 2005), it also
implicates family histories, social relationships, and sometimes even
68 SARA SHOSTAK AND MIRANDA WAGGONER

‘‘skeletons’’ that are not reducible to single nucleotide polymorphisms

(SNPs), but necessary to investigating them (Featherstone, Atkinson,
Bharadwaj, & Clarke, 2006). Although it is only part of their research, it
is not uncommon for epilepsy genetics researchers to be at work in the field,
building relationships with people with epilepsy and their family members,
and gathering detailed family histories and narratives. Further, even in the
laboratory, social interactions – and the intimacy established therein (Cohn,
2008) – are central to the conduct of neuroscientific research.
As amply demonstrated by decades of research in science and technology
studies, myriad aspects of knowledge production are deleted in official
representations of scientific discoveries: ‘‘the conclusions produced do not
represent all details of the work performed’’ (Star, 1983, p. 205; see also
Latour & Woolgar, 1979; Pickersgill, 2010). Recent empirical investigation
of neuroimaging research reveals that the interactions between researchers
and their subjects, which are central to its accomplishment, are carefully
deleted from research reports and publications (Cohn, 2008). The empiricist
repertoire of neuroscience further emphasizes the desirability of diminishing
the more subjective aspects of research in favor of impersonal and objective
technologies (Beaulieu, 2001). This is concordant with the broader practice
of filtering patient narratives to fit with standardized accounts aligned with
clinical objectives (Anspach, 1988; May, Rapley, Moreira, Finch, & Heaven,
2006).
However, in their personal reflections on their research practices, both
laboratory-based scientists and clinical researchers who study epilepsy
emphasize the importance of subjective accounts and social interactions. In
these contingent accounts, technological standardization of subjective
experience is seen as not only extremely difficult, in practice, but at least
in specific instances, wholly undesirable. Their perspectives thereby add yet
another layer of complexity to ongoing debates in the social sciences about
the costs and benefits of standardization (Timmermans & Almeling, 2009;
Timmermans & Epstein, 2010).
As the neurosciences endeavor to explain increasingly complex aspects of
human experience (e.g., empathy, moral reasoning, decision making, etc.,
see Cohn, 2008) and both the social and the life sciences seek to understand
how gene–environment interaction shapes health and social outcomes,
aspects of human life that can only be assessed in social interaction become
ever more important, if formally unacknowledged, dimensions of scientific
research. To date, the perception of seemingly irreconcilable epistemologies
has served as a barrier to interdisciplinary dialogue between sociology and
neuroscience (Cromby, 2007). We hope that highlighting the ‘‘messy’’ and
Narration and Neuroscience 69

‘‘subjective’’ (Cohn, 2008) and irreducibly social practices that are already
present in even very sophisticated and technologically intensive neuroscien-
tific research may serve as a first step toward establishing ‘‘cross talk’’
between these fields (Cerulo, 2010, p. 128).

NOTES
1. We use brackets and ellipses ([y]) to indicate where we have deleted words
from a quotation in order to make it easier to read. We do not mark where we have
deleted only sounds, such as ‘ums’ and ‘ahs,’ which are distracting and, for this kind
of analysis, inessential.
2. Available at http://www.genomics.upenn.edu/. Accessed on October 28, 2010
3. By ‘‘positive effects’’ this respondent is referring to aspects of the condition that
heighten or make more intense some aspect of brain function. For example, people
with autosomal dominant partial epilepsy with auditory features (ADPEAF) often
hear specific sounds before they have a seizure (Ottman, 2004).
4. Because anyone in this research community knows whose work contributed
to the identification of specific epilepsy syndromes, providing an interview
number for these quotations would make these researchers’ other comments
personally identifiable. Therefore, in the interest of ‘‘internal confidentiality’’ (Tolich,
2004), we do not provide a discrete identifier for the quotations in these three
paragraphs.

ACKNOWLEDGMENTS
Our first thanks are due to the scientists and clinicians who took time out of
their busy schedules to participate in the interviews that made this chapter
possible. We gratefully acknowledge the support of the Robert Wood
Johnson Health & Society Scholars Program at Columbia University, the
Epilepsy Foundation Research Grants Program, and the National Science
Foundation (Award 0750635). We thank Ruth Ottman for her enthusiasm,
expertise, and guidance of the larger project from which this analysis
derives. We appreciate the careful research assistance of Kristen Karlberg
and Vanessa Lopes Munoz, who helped with conducting interviews and
coding data. Martyn Pickersgill and Ira Van Keulen are extraordinarily
thoughtful editors whose comments and suggestions improved this chapter
in innumerable ways.
70 SARA SHOSTAK AND MIRANDA WAGGONER

REFERENCES
Anspach, R. (1987). Prognostic conflict in life-and-death decisions: The organization as an
ecology of knowledge. Journal of Health and Social Behavior, 28, 215–231.
Anspach, R. (1988). Notes on the sociology of medical discourse: The language of case
presentation. Journal of Health and Social Behavior, 29, 357–375.
Armstrong, D. (1995). The rise of surveillance medicine. Sociology of Health & Illness, 17,
393–404.
Armstrong, E. M. (2003). Conceiving risk, bearing responsibility: Fetal alcohol syndrome
and the diagnosis of moral disorder. Baltimore, MD: The Johns Hopkins University
Press.
Aronowitz, R. A. (1991). Lyme disease: The social construction of a new disease and its social
consequences. Milbank Quarterly, 69, 79–112.
Aronowitz, R. A. (2001). When do symptoms become a disease? Annals of Internal Medicine,
134, 803–808.
Atkinson, P., & Glasner, P. (2007). Introduction: New genetics, new identities? In: P. Atkinson,
P. Glasner & H. Greenslade (Eds.), New genetics, new identities (pp. 1–10). London:
Routledge.
Balint, M. (1957/2000). The doctor, his patient and the illness. New York, NY: International
Universities Press.
Bearman, P. (Ed.). M. Martin & S. Shostak (associate ed.). (2008). Exploring genetics and social
structure (Special Issue). American Journal of Sociology, 114, S1.
Beaulieu, A. (2001). Voxels in the brain: Neuroscience, informatics and changing notions of
objectivity. Social Studies of Science, 31, 635–680.
Beghi, E. (2009). The concept of the epilepsy syndrome: How useful is it in clinical practice?
Epilepsia, 50, 4–10. Series 4.
Berg, A. T., Berkovic, S. F., Brodie, M. J., Buchhalter, J., Cross, J. H., van Emde Boas, W., y
Scheffer, I. E. (2010). Revised terminology and concepts for organization of seizures and
epilepsies: Report of the ILAE commission on classification and terminology,
2005–2009. Epilepsia, 51, 676–685.
Bowker, G. C., & Star, S. L. (1999). Sorting things out: Classification and its consequences.
Cambridge, MA: MIT Press.
Brown, P. (1995). Naming and framing: The social construction of diagnosis and illness. Journal
of Health and Social Behavior, 36, 34–52.
Canguilhem, G. (1966/1998). The normal and the pathological. New York, NY: Zone Books.
Casper, M. J., & Berg, M. (1995). Introduction to special issue on constructivist perspectives on
medical work: Medical practices in science and technology studies. Science, Technology
& Human Values, 20(4), 395–407.
Cerulo, K. A. (2010). Mining the intersections of cognitive sociology and neuroscience. Poetics,
38, 115–132.
Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative
analysis. London: Sage Publications.
Charon, R. (2001). Narrative medicine: A model for empathy, reflection, profession, and trust.
JAMA, 286, 1897–1902.
Choi, H., Winawer, M., Kalachikov, S., Pedley, T., Hauser, W., & Ottman, R. (2006).
Classification of partial seizure symptoms in genetic studies of the epilepsies. Neurology,
66, 1648–1653.
Narration and Neuroscience 71

Choudhury, S., Nagel, S. K., & Slaby, J. (2009). Critical neuroscience: Linking neuroscience
and society through critical practice. BioSocieties, 4, 61–77.
Clarke, A. E. (2005). Situational analysis: Grounded theory after the postmodern turn. Thousand
Oaks, CA: Sage Publications.
Clarke, A. E., Fishman, J., Fosket, J., Mamo, L., & Shim, J. (2003). Biomedicalization:
Technoscientific transformations of health, illness, and U.S. biomedicine. American
Sociological Review, 68, 161–194.
Cohn, S. (2008). Making objective facts from intimate relations: The case of neuroscience and
its entanglements with volunteers. History of the Human Sciences, 21, 86–103.
Conrad, P., & Schneider, J. W. (1992). Deviance and medicalization: From badness to sickness.
Philadelphia, PA: Temple University Press.
Cromby, J. (2007). Integrating social science with neuroscience: Potentials and problems.
BioSocieties, 2, 149–169.
Cullen, J., & Cohn, S. (2006). Making sense of mediated information: Empowerment and
dependency. In: A. Webster (Ed.), New technologies in health care: Challenge, change and
innovation (pp. 112–130). Basingstoke, UK: Palgrave Macmillan.
Duster, T. (2006). Comparative perspectives and competing explanations: Taking on the newly
configured reductionist challenge to sociology. American Sociological Review, 71, 1–15.
Dwyer, E. (1992). Stories of epilepsy, 1880–1930. In: C. Rosenberg & J. Golden (Eds.), Framing
disease: Studies in cultural history (pp. 248–272). New Brunswick, NJ: Rutgers
University Press.
Epstein, S. (2008). The rise of ‘‘Recruitmentology’’: Clinical research, racial knowledge, and the
politics of inclusion and difference. Social Studies of Science, 38, 801–832.
Featherstone, K., Atkinson, P., Bharadwaj, A., & Clarke, A. (2006). Risky relations: Family,
kinship and the new genetics. Oxford, UK: Berg Publishers.
Freese, J., Jui-Chung Allen, L. I., & Wade, L. D. (2003). The potential relevances of biology to
social inquiry. Annual Review of Sociology, 29, 233–256.
Freese, J., & Shostak, S. (2009). Genetics and social inquiry. Annual Review of Sociology, 35,
107–128.
Garro, L. C., & Mattingly, C. (2000). Narrative as construct and construction. In: C. Mattingly
& L. C. Garro (Eds.), Narrative and the cultural construction of illness and healing (pp.
1–49). Berkeley, CA: University of California Press.
Gibbon, S., & Novas, C. (Eds.). (2008). Biosocialities, genetics and the social sciences. London:
Routledge.
Gilbert, G. N., & Mulkay, M. (1984). Opening Pandora’s box: A sociological analysis of
scientists’ discourse. Cambridge, MA: Cambridge University Press.
Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory. Chicago, IL: Aldine.
Good, B., & Good, M.-J. D. (2000). ‘‘Fiction’’ and ‘‘historicity’’ in doctors’ stories. In:
Narrative and the cultural construction of illness and healing (pp. 50–69). Berkeley, CA:
University of California Press.
Greenhalgh, S. (2001). Under the medical gaze: Facts and fictions of chronic pain. Berkeley, CA:
University of California Press.
Hauser, W. A., Annegers, J. F., & Kurland, L. T. (1991). Prevalence of epilepsy in Rochester,
Minnesota: 1940–1980. Epilepsia, 32, 429–445.
Hauser, W. A., Annegers, J. F., & Rocca, W. A. (1996). Descriptive epidemiology of epilepsy:
Contributions of population-based studies from Rochester, Minnesota. Mayo Clinic
Proceedings, 71, 576–586.
72 SARA SHOSTAK AND MIRANDA WAGGONER

Hedgecoe, A. (2001). Schizophrenia and the narrative of enlightened geneticization. Social

Studies of Science, 31, 875–911.
Horwitz, A. V. (2005). Media portrayals and health inequalities: A case study of
characterizations of gene x environment interactions. Journals of Gerontology Series
B-Psychological Sciences and Social Sciences, 60, 48–52.
Hunt, L. (1994). Practicing oncology in provincial Mexico: A narrative analysis. Social Science &
Medicine, 38, 843–853.
Joffe, S., & Miller, F. G. (2008). Bench to bedside. Hastings Center Report, 38, 30–42.
Joyce, K. A. (2008). Magnetic appeal: MRI and the myth of transparency. Ithaca, NY: Cornell
University Press.
Kerr, A. (2005). Understanding genetic disease in a socio-historical context: A case study of
cystic fibrosis. Sociology of Health & Illness, 27, 873–896.
Kleinman, A. (1988). The illness narratives: Suffering, healing, & the human condition.
New York, NY: Basic Books.
Kumar, D. (2007). Genomic medicine: A new frontier of medicine in the twenty first century.
Genomic Medicine, 1, 3–7.
Lakoff, A. (2005). Diagnostic liquidity: Mental illness and the global trade in DNA. Theory and
Society, 34, 63–92.
Latimer, J., Featherstone, K., Atkinson, P., Clarke, A., Pilz, D. T., & Shaw, A. (2006).
Rebirthing the clinic: The interaction of clinical judgment and genetic technology in the
production of medical science. Science, Technology & Human Values, 31, 599–630.
Latour, B., & Woolgar, S. (1979). Laboratory life: The social construction of scientific facts.
Princeton, NJ: Princeton University Press.
Lindee, S. (2005). Moments of truth in genetic medicine. Baltimore, MD: The Johns Hopkins
University Press.
Mattingly, C. F. (1991). The narrative nature of clinical reasoning. American Journal of
Occupational Therapy, 45, 998–1005.
Mattingly, C. F. (1994). The concept of ‘‘therapeutic emplotment’’. Social Science & Medicine,
38, 811–822.
May, C., Rapley, T., Moreira, T., Finch, T., & Heaven, B. (2006). Technogovernance:
Evidence, subjectivity, and the clinical encounter in primary care medicine. Social
Science & Medicine, 62, 1022–1030.
Meencke, H.-J. (2009). Clinical neuropathology of the epilepsies in the 100 years of the ILAE
(1909–2009). Epilepsia, 50, 8–16. Series 4.
Miller, F. A., Ahern, C., Smith, C. A., & Harvey, E. A. (2006). Understanding the new
human genetics: A review of scientific editorials. Social Science & Medicine, 62,
2373–2385.
Miller, F. G., & Rosenstein, D. L. (2003). The therapeutic orientation to clinical trials.
New England Journal of Medicine, 348, 1383–1386.
Mol, A. (2002). The body multiple: Ontology in medical practice. Durham, NC: Duke University
Press.
Morris, N., Armstrong, V., & Balmer, B. (2009). Constructing a safe research environment:
Technology talk between researchers and volunteer research subjects. Health, Risk &
Society, 11, 99–116.
Ottman, R. (2005). Analysis of genetically complex epilepsies. Epilepsia, 46(suppl.10), 7–14.
Perrin, A. J., & Lee, H. (2007). The undertheorized environment: Sociological theory and the
ontology of behavioral genetics. Sociological Perspectives, 50, 303–322.
Narration and Neuroscience 73

Pickersgill, M. (2009). Between soma and society: Neuroscience and the ontology of
psychopathy. BioSocieties, 4, 45–60.
Pickersgill, M. (2010). Ordering disorder: Knowledge production and uncertainty in
neuroscience research. Science as Culture, 20, 71–87.
Ponder, M., Statham, H., Hallowell, N., Moon, J. A., Richards, M., & Raymond, F. L. (2008).
Genetic research on rare familial disorders: Consent and the blurred boundaries between
clinical service and research. Journal of Medical Ethics, 34, 690–694.
Prasad, A. (2005). Scientific culture in the ‘‘other’’ theater of ‘‘modern science’’: An analysis of
the culture of magnetic resonance imaging research in India. Social Studies of Science,
35, 463–489.
Rabinow, P., & Rose, N. (2006). Biopower today. BioSocieties, 1, 195–217.
Racine, E., Waldman, S., Rosenberg, J., & Illes, J. (2010). Contemporary neuroscience in the
media. Social Science & Medicine, 71, 725–733.
Rose, N. (1999). Governing the soul: The shaping of the private self. London: Free Associations
Books.
Rosenberg, C. (1992). Explaining epidemics and other studies in the history of medicine.
Cambridge: Cambridge University Press.
Rosenberg, C. (2007). Our present complaint: American medicine, past and present. Baltimore,
MD: The Johns Hopkins University Press.
Rutter, M., Moffit, T. E., & Caspi, A. (2006). Gene–environment interplay and psychopathol-
ogy: Multiple varieties but real effects. Journal of Child Psychology and Psychiatry, 47,
226–261.
Schneider, J. W., & Conrad, P. (1983). Having epilepsy: The experience and control of illness.
Philadelphia, PA: Temple University Press.
Schwartz, D., & Collins, F. S. (2007). Environmental biology and human disease. Science, 316,
695–696.
Shostak, S. (2003). Locating gene–environment interaction: At the intersections of genetics and
public health. Social Science & Medicine, 56, 2327–2342.
Shostak, S. (2005). The emergence of toxicogenomics: A case study of molecularization. Social
Studies of Science, 35(3), 367–403.
Shostak, S., & Ottman, R. (2006). Ethical, legal, and social dimensions of epilepsy genetics.
Epilepsia, 47, 1595–1602.
Star, S. L. (1983). Simplification in scientific work: An example from neuroscience research.
Social Studies of Science, 13(2), 205–228.
Star, S. L. (1985). Scientific work and uncertainty. Social Studies of Science, 15, 391–427.
Star, S. L. (1991). The sociology of the invisible: The primacy of work in the writings of Anselm
Strauss. In: D. Maines (Ed.), Social organization and social process: Essays in honor of
Anselm Strauss (pp. 265–283). Hawthorne, NY: Aldine de Gruyter.
Taylor, K. M., & Kelner, M. (1987). Interpreting physician participation in randomized
clinical trials: The physician orientation profile. Journal of Health and Social Behavior,
28, 389–400.
Temkin, O. (1971). The falling sickness: A history of epilepsy from the Greeks to the beginnings of
modern neurology. Baltimore, MD: The Johns Hopkins University Press.
Timmermans, S. (2006). Postmortem: How medical examiners explain suspicious deaths.
Chicago, IL: University of Chicago Press.
Timmermans, S., & Almeling, R. (2009). Objectification, standardization, and commodification
in health care: A conceptual readjustment. Social Science & Medicine, 69, 21–27.
74 SARA SHOSTAK AND MIRANDA WAGGONER

Timmermans, S., & Berg, M. (1997). Standardization in action: Achieving local universality
through medical protocols. Social Studies of Science, 27, 273–305.
Timmermans, S., & Epstein, S. (2010). A world of standards but not a standard world: Toward
a sociology of standards and standardization. Annual Review of Sociology, 36, 69–89.
Timmermans, S., & Haas, S. (2008). Towards a sociology of disease. Sociology of Health &
Illness, 30, 659–676.
Timmermans, S., & Tavory, I. (2007). Advancing ethnographic research through grounded
theory practice. In: K. Charmaz & A. Bryant (Eds.), Handbook of grounded theory
(pp. 493–513). London: Sage Publications.
Timmermans, S., & Tavory, I. (n.d.). Theory construction in qualitative research: Grounded
theory and the logic of abduction. Unpublished manuscript. Author’s Files.
Tolich, M. (2004). Internal confidentiality: When confidentiality assurances fail relational
informants. Qualitative Sociology, 27(1), 101–106.
Tutton, R., Kaye, J., & Hoeyer, K. (2004). Governing UK biobank: The importance of ensuring
public trust. Trends in Biotechnology, 6, 284–285.
Vidal, F. (2009). Brainhood, anthropological figure of modernity. History of the Human
Sciences, 22, 5–36.
Wainwright, S. P., Michael, M., & Williams, C. (2009). Shifting paradigms? Reflections on
regenerative medicine, embryonic stem cells and pharmaceuticals. Sociology of Health &
Illness, 30, 959–974.
Zara, F., & Bianchi, A. (2009). The impact of genetics on the classification of epilepsy
syndromes. Epilepsia, 50, 11–14. Series 4.
Zavestoski, S., Brown, P., McCormick, S., Mayer, B., D’Ottavi, M., & Lucove, J. C. (2004).
Patient activism and the struggle for diagnosis: Gulf war illnesses and other medically
unexplained physical symptoms in the US. Social Science & Medicine, 58, 161–175.
ON THE ASSEMBLY LINE:
NEUROIMAGING PRODUCTION
IN CLINICAL PRACTICE

Kelly Joyce

ABSTRACT

This chapter presents a sociological analysis of the work involved in

producing neuroimaging scans used in clinical practice. Drawing on
fieldwork in magnetic resonance imaging (MRI) units in hospitals and
free-standing imaging centers; in-depth interviews with technologists,
radiologists, and neurologists; and reviews of relevant medical literatures,
this analysis demonstrates how assembly line techniques structure
neuroimaging work. Neuroimages (after being ordered by the referring
clinician) are created in an image production line where scans of brains,
breasts, livers, and other body parts are all produced: although some
facilities may focus on one area of the body, most create an array of
scans. Following MRI scans as they are produced demonstrates how
medical work emphasizes repetition, specialization, and efficiency – key
features of mass production. On the medical assembly line, the
organization of work aims to transform patients into objects – ones that
multiply as scans are created and circulated. Neurologists, radiologists,
and technologists are positioned as skilled workers who manage the flow
of bodies and the production of knowledge with the aim of producing
health or, at the very least, knowledge of illness. Patients are also actors

Sociological Reflections on the Neurosciences

Advances in Medical Sociology, Volume 13, 75–98
Copyright r 2011 by Emerald Group Publishing Limited
All rights of reproduction in any form reserved
ISSN: 1057-6290/doi:10.1108/S1057-6290(2011)0000013008
75
76 KELLY JOYCE

who actively impact the imaging production process. Previous scholarship

has shown that diagnostic work involves a distributed form of expertise;
one that involves patients, other medical professionals, machines, and
neurologists. This chapter demonstrates that the deployment and
synchronization of this expertise is a form of labor, involving distinct
professions, professional hierarchies, and reimbursement systems. Work-
ing conditions are central to the production of MRI scans as knowledge
and contribute to the social shaping of neuroimaging techniques.

Imaging scans are central to the production and consumption of

neuroscience. In the clinic, magnetic resonance imaging (MRI) and computed
tomography (CT) scans are crucial components of neurologists’ diagnostic
work and the surveillance of illness and health. In the research lab, scientists
use functional MRI (fMRI) to investigate how and when oxygen flows to
parts of the brain. Such scientists search for possible correlations between
scan content and clinical disease presentation. This move, coupled with efforts
to use structural MRI to find anatomical markers for psychiatric illnesses,
aims to bring more neuroclinicians (e.g., psychiatrists and psychologists) into
imaging use and consumption (Joyce, 2010).
Although highly successful as eye-catching media stories, such invest-
ments have yet to translate into standard diagnostic practice. In my
fieldwork, neurologists used MRI to help diagnose neurological diseases
such as multiple sclerosis, brain tumors, and stroke; psychiatrists and
psychologists did not use MRI or fMRI to diagnose conditions such as
schizophrenia, bipolar disorder, or attention deficit hyperactivity disorder.
Despite significant government investment, research has yet to produce
diagnostic markers reliable at the individual level for psychiatric illnesses
nor have clinical psychiatrists or psychologists been enrolled as prescribers
of the techniques.
This chapter focuses on the work of producing neurological scans in the
clinic. It draws on fieldwork conducted in MRI units in hospitals and free-
standing centers in the United States in 2000–2001; in-depth interviews with
20 technologists, 17 radiologists, and 11 neurologists affiliated with the
research sites; and reviews of relevant medical literatures. I interviewed
technologists and radiologists – the main medical actors who produce scans –
who worked at private imaging centers, as well as those employed by large
university-affiliated hospitals. All interviews bar one were taped and
transcribed. Each was systematically coded by hand for reoccurring ideas
and themes.
Neuroimaging Production in Clinical Practice 77

Much has been written about the values and decisions that impact the
content and meanings ascribed to medical images (see, e.g., Beaulieu, 2002;
Cohn, 2004, 2008; Dumit, 2004; Gross, 2009; Joyce, 2008; Prasad, 2005), and
sociological analyses of work practices have focused on how the introduction
of new imaging technology impacts professional roles (Barley, 1986, 1990;
Burri, 2008). This chapter adds to the scholarship on neuroscience images by
showing how factory production techniques structure work in imaging units.
The organization and delivery of health care in hospitals and clinics more
broadly emphasize productivity, repetition, and hierarchy (see, for example,
Bosk, 2003; Diamond, 1992; Timmermans & Almeling, 2009), and this
chapter draws on ethnographic data to show clearly how these take place in
neuroimaging production. Moreover, shifting the analytical lens of the
sociology of neuroscience away from the laboratory and into the clinic
demonstrates how the symbolic potency of the brain gets reconfigured as
neurological scans are typically produced alongside images of livers, spleens,
spines, and other areas of the body. In this setting, the brain becomes one
organ of many produced on the imaging production line.
This analysis concentrates on the United States where economic, political,
and social factors such as a fee-for-service reimbursement system, cultural
tropes that emphasize intervention (versus waiting), and a fear of
malpractice litigation contribute to an intensification of the speed and
output of assembly line work (Joyce, 2008; Payer, 1996; Kachalia,
Choudhury, & Studdert, 2005). The speed and volume of imaging
production are likely to vary in nonfee-for-service health systems or in
countries with a greater degree of government intervention, and may be less
intense in countries like the United Kingdom that operate on a salary system
or value doing less (versus doing more) as a medical strategy (Payer, 1996).

CONSTRUCTING NEUROIMAGES IN CLINICAL

MEDICINE

Technologists are highly skilled individuals who work closely with medical
imaging apparatuses. Most employers require technologists to complete a
two-year radiologic technologist (RT) program, and the American Registry
of Radiologic Technologists (ARRT) offers a certification examination in
MRI. The examination covers topics such as MRI screening and safety,
interpersonal communication, patient assessment, monitoring, and manage-
ment, and infection control. The exam also covers the technical dimensions
78 KELLY JOYCE

of constructing images (e.g., pulse sequences, data manipulation, and

sequence parameters) and the basic science behind the technology
(e.g., electromagnetism, nuclear magnetism, radiofrequency systems, and
gradient systems).
MRI exams begin when technologists, usually dressed in uniform scrubs
or regular clothes covered by a white hospital coat, meet with patients who
are usually dressed in hospital gowns. During this initial encounter,
technologists interview patients to ensure their safety during the examina-
tion. Screening questions such as ‘‘Do you have metal present in your
body?’’ and ‘‘Do you have a pacemaker?’’ are asked. The magnetic field
produced by an MRI system will pull metal objects – even those located in a
person’s body – toward the machine, causing harm to the individual. It can
also alter the pacing of pacemakers, leading them to malfunction. During
the exchange, technologists might also give an overview of the exam, answer
questions, and address concerns voiced by patients. Technologists may only
have a few minutes to talk with patients; time constraints often prevent this
discussion from going into detail (e.g., addressing why metal in the body or
pacemakers are not permitted in the MRI machine room or having the time
to elicit and then address a quiet patient’s concerns about the procedure).
In the MRI unit, the brain is one organ of many that is imaged. Although
some machines are dedicated to scanning for particular neurological
diseases, most MRI machines are used to create an array of scans.
Neuroimages (after being ordered by the referring clinician) are typically
created in a production line where scans of brains, knee cartilage and
ligaments, livers, and other anatomical areas are all constructed.
After completing the screening procedure, each patient gets onto a
stretcher-like platform, and a technologist presses a button which slides him
or her into the MRI machine. For cranial scans, a head coil may be used.
The coil, which looks somewhat like a hockey mask, helps emit, and receive
radio waves which improves image quality. The technologist then leaves the
room and sits at a computer desk in an adjacent room. During an exam, a
technologist talks to the patient via a microphone between scans: ‘‘How are
you doing? The next scan is six minutes. Hold still.’’ An examination can
last anywhere from 20 minutes to an hour and includes multiple scans of the
body part under investigation, like the brain. After the scans are obtained,
the technologist escorts the patient back to the dressing room, and either
prints out the resulting images on film for the radiologist or sends them to
the radiologist in electronic format via computer networks.
Like other assembly line occupations, the technologist’s job is based on
repetition and specialization – two techniques that promote the flow of
Neuroimaging Production in Clinical Practice 79

patients through the imaging unit. Technologists replicate the entire sequence
of actions from screening to printing throughout the day and (at some
locations) night, as they work on and with machines to transform parts of
patients’ brains into a series of images. These images become the brain – or at
least one of the brains produced by diagnostic tests – that is encountered by the
neurologist who must sort through different (and perhaps contradictory) test
results to formulate a treatment plan. Similarly, ultrasound scans become the
fetus, or at least one of the fetuses produced by tests, providing a visualisation
that is simultaneously different from and related to the physical body (Draper,
2002). Other monitoring techniques will produce different notions of the fetus,
all of which must be compiled and synthesized by the clinician.
The use of factory techniques permeates technologists’ work experiences.
The speed, or what some call the ‘efficiency,’ of factory production comes
from breaking down processes into repetitive tasks that focus a worker’s
attention on a component of the whole. The fragmentation of production
practices complements the fragmentation of the body in the MRI
examination; each mutually reinforces the other to create an assembly line
perspective that emphasizes the part and the task-not the whole, the patient
per se. The technologists themselves have adopted language that emphasizes
the fragmentary nature of their work. In my fieldwork, I observed how
technologists referred to patients as body parts. Statements like, ‘‘I have a
liver sitting outside,’’ ‘‘I just put a brain on the table,’’ and ‘‘Is the breast
here yet?’’ were commonly used to discuss people waiting for MRI
examinations. The transformation of people into tasks is common in other
areas of medical care. For example, a general surgeon will focus on the
procedure to be performed and say, ‘‘I have a lap appy (laparoscopic
appendectomy)’’ or ‘‘Did you see the whipple [a surgical procedure that
removes the pancreas] today?’’ instead of mentioning the actual patient,
while hospital nurses refer to patients by disease and bed number
(Menzies, 2005, p. 134). In a work environment where speed and volume
are valued, categories that focus on tasks are required.
The centrality of mass production techniques is also evident in the use of
other factory-related language such as ‘‘throughput,’’ ‘‘move-ups,’’ and
‘‘add ons.’’ In factory work, throughput refers to the amount of raw material
processed by an industrial plant in a given amount of time. Recently, it has
come to be used in computer industries to refer to the amount of data
processed by a computer over a stated time period. In imaging units,
throughput refers to the numbers of patients moved through the scanner
over an unspecified period of time. Move-ups, a phrase created by health
care workers to reflect the flexible, human assembly line, refers to patients
80 KELLY JOYCE

who are rescheduled for earlier appointments. Add-ons, another innovative

term, describes people who need an examination but are not yet scheduled.
This terminology signals the value placed on work flow and reflects the
transformation of humans into objects that may be more easily processed.

ACCELERATION OF PRODUCTION

Speed, a crucial element of factory labor, is another important component

to the structure of work in an American MRI facility and in US health care
more broadly. Automobile manufacturer Henry Ford, one of the first to
apply assembly line techniques to mass production, increased the speed of
production as a way to produce more and more yield (Sward, 1948). The
technologists at the sites I observed in the United States were similarly
pressured to increase the volume of patients scanned. As one technologist
explained: ‘‘I think that hospitals and a lot of places are interested in
turnover. Get them in. Get them out. Get them in. Get them out. Get them
in. Get them out.’’ Another technologist said, ‘‘Techs are under more
pressure now to do faster exams. Since scans are quicker, techs are expected
to do exams in thirty minutes instead of sixty minutes.’’ Likewise, ‘‘There is
so much work going on these days, we’re going so fast and putting people in
and out, in and out.’’ Speed, it seems, is of the essence.
As part of the process of acceleration, technologists in hospital settings
are expected to fill any cancellations. If free time opens up at hospital MRI
units, technologists are supposed to locate another potential patient. They
search waiting lists or call other wards in the hospital to find someone to fill
the vacant spot. The command to fill vacancies creates a certain amount of
chaos. In my fieldwork, voices often called out, ‘‘Do you have any
openings?’’ and phones rang constantly as receptionists called to see if any
space had opened up. The pressure to fill suddenly empty spots is less
apparent at free-standing facilities. Technologists at free-standing units are
also expected to be highly productive and efficient, but the lack of im-
mediately accessible patients means there is only so much technologists can
do to fill empty slots.
Technologists have to move bodies – both their own and those of patients –
ever faster. The emphasis on speed and volume is experienced as stress and
anxiety. One technologist articulated this when she said, ‘‘It is stressful
doing more patients [y] you are required to do more in a shorter period
of time.’’ The pressure to speed up the movement of patients through
the assembly line is compounded by the demands of working with ill
Neuroimaging Production in Clinical Practice 81

individuals, who often move slowly if they are injured or do not feel well.
Time-constraints are brought to the fore in the cases of patients who are
taken aback when they realize they have to lie inside the machine. As one
technologist explained:
It is hard. The administration doesn’t realise the test might take 20 minutes but it might
take you 10 minutes just to talk them [patients] into going into the magnet. They don’t
want to look at issues like that.

Another technologist asserted that ‘‘This [a faster exam] is not realistic. It can
take time getting an in-patient or uncomfortable patient into the scanner.’’
Thus, a tension exists between the pressure technologists feel under to process
more patients, and the demands of having (and wanting) to give emotional
support to patients. Such tensions have been documented in other health care
settings that involve emotional labor (see, for example, Diamond, 1992).
The demand to speed up the process of an MRI exam permeates
technologists’ consciousness. One eloquently illustrated how acceleration
has become a way to understand change and work when he discussed the
recent shift in MRI terminology. Over the past few years, people in the
medical and manufacturing or sales communities have shortened the name
MRI to MR and the technology is often called MR in these circles.
Reflecting the significance of accelerated production in her explanation of
this linguistic change, the technologist explained: ‘‘I think it is MR because
it is less words. We have got to move faster.’’
The design of MRI units also affects the speed with which patients flow
through a facility. MRI units are often designed so that the computer screen
faces away from the path patients take as they exit the examination room.
This design prevents patients from stopping to view images as they leave,
since such curiosity slows down work flow. ‘‘We are on a really tight
schedule’’, one technologist explained. ‘‘You just don’t have that type of
time [to show patients the images]. I know it sounds kind of cold, but we
really don’t have time.’’
Another less common design used to facilitate flow is the addition of a
door that allows patients to bypass the computer area. In this layout, two
doors go into the examination room. One door, used by the technologist,
connects the examination room to the room with the computer. The other
door, for the patient, leads from the dressing room directly into the exam
room. With this design, the patient never enters the control room, which
prevents patients from seeing and thus asking about their scans. One
technologist who worked in an MRI unit that used the two-door design
said, ‘‘Patients never asked, never were concerned [with their images]. They
82 KELLY JOYCE

never had the inkling to look over.’’ For the sake of efficiency, production
takes precedence over a patient’s desire to see and learn about their own
health and anatomy; in the imaging process, such desire may cease to be
produced.

PRODUCING DOCILE PATIENTS

Humans, like the raw materials on the old Ford assembly line, can and do
disrupt production on the imaging assembly line. Whether they react with
anxiety or curiosity, people can slow down the process of getting an MRI.
Accelerating the process means making patients more cooperative, or, as
philosopher Michel Foucault (1979) suggests, producing ‘‘docile bodies.’’
Docile bodies are disciplined and follow the strict routines of productive
medical care. Producing docility takes work because patients are often
anything but docile in their initial encounters with MRI technology. The
nature of MRI procedures – their length, loudness, and the positioning of
the body inside the machine – causes patients to resist docility.
Not surprisingly, people often react strongly to the machine. The
potential danger of the technology (due to the magnetic field that draws
metal to it from objects and persons) requires bold warning signs to be
placed around the entrance to the MRI room and patients to undergo strict
screening procedures before entering this area. In addition to this
heightened awareness of risk, patients are placed inside the machine and
are expected to lie still in this chamber for the duration of the examination.
The claustrophobia can be particularly heightened in a head MRI where a
person typically wears a device that encloses one’s head in a plastic tube with
bars. Since exams can last anywhere from 20 to 60 minutes, people are
enclosed in a physical state of stillness for an extended period of time. The
stillness and sense of enclosure are further compounded by the loud
knocking sound produced when the machine is in use. Reminiscent of a
train passing by, a rumbling noise reverberates throughout the room while
the exam is in process. The mix of sensory deprivation and overload makes
the experience of having an exam unsettling and memorable.
Neurologists, radiologists, and technologists alike acknowledge how
powerfully the experience affects those ensconced within the MRI machine.
One neurologist captured the intensity of an examination when he described
his own experience as a patient:
You are really enclosed. It’s noisy. Buzzings and things. Growling. It [the exam] took
about forty-five minutes, and you are laying there with this thing right in front of your
Neuroimaging Production in Clinical Practice 83

face. You’re pretty much sensory deprived except for this noise y I was laying there
thinking that if I were the least bit claustrophobic or the least bit demented I can see how
this would tip you over the edge.

Another radiologist highlighted what he called the dehumanizing effect of

the examination:
I felt disoriented. After about fifteen minutes I couldn’t tell which was up or down or
right or left, I sort of felt disoriented. I had a head coil on, which is also, I think, very
dehumanising. It looks like a hockey mask, and you’re in a tube.

The combination of the enclosure in the machine with a coil on his face
took away this physician’s sense of humanity and contributed to a sense of
objectification.
Although many people find ways to manage the sensory discomfort that
accompanies an MRI examination, others do not. The feeling of enclosure,
the loud noise, and the sensory deprivation – all these factors make it hard
for some people to complete the exam. Exam incompletion is a well-
recognized problem in the MRI community – one psychologist, Paul Friday,
even created the name ‘‘failed scan syndrome’’ (FSS) to describe the
phenomenon (Segal, 1995). Facilities lose revenue when exams are not
completed; accordingly, numerous studies evaluate the reasons why patients
are unable to complete an MRI (primarily anxiety and claustrophobia)
and recommend strategies to deal with them (Melendez & McCrank, 1993;
Skler, Penn-Jones, Cataldo, Conner, & Zerhouni, 1991; Thorpe, Owens,
Whitehouse, & Dewey, 1990). Uncompleted exams are also troublesome
for patients who may feel a sense of failure at being unable to complete
an exam.
Technologists, physicians, and machine designers creatively and inten-
sively work to transform patients into compliant bodies. The strategies used
to do this range from techniques such as medication to innovations in
machine design, and the effect of these techniques on one’s time and energy
varies. In the early and mid-1990s, technologists primarily used relaxation
strategies such as talking to patients during the exam, offering patients
headphones through which they could listen to music, and providing
aromatherapy to soothe anxiety and facilitate patient flow. Such strategies
may or may not produce the docility needed to complete the examination.
Medication is another intervention used to secure MRI exam completion:
people who are claustrophobic or extremely anxious may be sedated before
an examination. Drug-induced sedation secures a completed examination,
which benefits both patients – who get information from the test – and the
imaging unit, which keeps the patient-object in motion and allows
84 KELLY JOYCE

productivity to increase. This strategy shifts the time burden from the
technologist to the patient, who now has to come in earlier for the sedation
and stay later to recover from it. Such a strategy cannot be used in
functional MRI scans because a person needs to be awake to respond to
cognitive or emotional tasks.
The open MRI machine also facilitates compliance and enhances
productivity. In 1989, Hitachi pioneered the open MRI machine, and by
the mid-1990s other imaging manufacturers produced this design as well.
The machine, as its name suggests, has open sides. The person being scanned
still lies sandwiched in the middle of the machine, but two of the
surrounding walls are now open. Other design innovations – such as lower
table heights and the expansion of the space between the patient and the
machine walls in closed machines – make people more comfortable during
the exam. Such technological solutions aim to alleviate anxious reactions to
the MRI technology and ensure exam completion; they seek to produce
docile patients.
Music, talk, sedation, and technology design are all possible strategies to
soothe anxiety and facilitate patient flow. No one method ensures patient
compliance and exam completion. The values embedded in definitions of
what makes a ‘good examination’, though, are worth considering. A
technologist I interviewed offered insight into what makes a good
examination experience in the United States:

There was an article in an X-ray magazine about a patient who had the same test two
weeks apart. The first technologist was wonderful and explained everything and let
somebody in the room with them and this and that. The next time he had another
technologist, same type of exam. No. They can’t come in the room with you. Just didn’t
explain. And from a patient’s point of view the difference was terrible. The experience he
had the second time was terrible, and it just was little things a technologist could have
done.

Drawing on the article and her own work experience, she outlined three
things that make the patient more comfortable and help them complete the
exam. First, patients feel more secure when a friend or family member is in
the room with them; ‘‘I think it’s better if they [patients] have somebody in
the room with them. They’d feel a lot better when there’s another person
right there,’’ she explained. Second, patients feel reassured when technol-
ogists talk with them and offer some forms of professional body contact
such as touching the head: ‘‘If you talk to them a lot. Give them a lot of
body contact’’. Finally, technologists need to demonstrate empathy, letting
patients know that they understand how they might be feeling. This
Neuroimaging Production in Clinical Practice 85

technologist recommended acknowledging the stress of an exam to build a

connection with patients, producing docility through empathic sociality.

Into the reading room

The ‘reading room’ is the name given to the space within which radiologists
interpret or read MRI examinations, verbally transforming image content
into pathology and normal anatomy. Reading rooms can be adjacent to the
MRI machine in free-standing centers or down the hall from the machines in
hospital units. Transcribers, located in yet another site, translate and at
times edit the radiologist’s verbal recording into a written report, which is
then sent to the referring physician. The outsourcing of radiological work is
occurring, but to various degrees in different countries. In the United States,
powerful professional institutions such as the American College of
Radiology and the Radiological Society of North America help minimize
the level of outsourcing. In September 2010, for example, the US company
Virtual Radiologic (vRad) merged with Nighthawk, a company that also
provided virtual radiology services to US hospitals and physicians, making
it the largest teleradiology practice in the country. Even with this merger,
though, vRad controls slightly more than 1% of the radiology professional
services market and primarily employs US-trained physicians (Moan, 2010).
Radiology services in the United States have thus yet to incur the types of
outsourcing (i.e., employing labor abroad to provide services to people in
the home country) that have occurred in customer service jobs in
telecommunications and the like.
Of all workers on the assembly line, radiologists are the most invisible to
patients, and – unless the referring doctors stress it – their contributions to
the production process can go unnoticed. Radiologists get referring
clinicians’ written orders for MRI exams; these note which part of the
body should be scanned and which diseases to rule out. Radiologists give the
written requests to technologists who use them to construct scans. If an
order is unclear, the referring physician may be contacted. Patients thus
seldom meet radiologists, who come into the exam room only if there is a
problem or a procedure that requires assistance.
Like technologists, radiologists function in an assembly line format, and
their work is repetitive. In larger hospitals, they sit side-by-side in the
reading room, quietly murmuring their interpretations into the red record
light on the microphone. In smaller centers, they primarily work alone.
Although they may call in the technologists on site or phone another
86 KELLY JOYCE

physician if stumped or impressed by an unusual scan, radiologists at free-

standing centers, or small hospitals typically transform images into verbal
recordings on their own. The pictures are the central focus of this part of the
assembly line, and the reading room is usually dimly lit so that physicians
can concentrate on them.
Specialisation is another key component of their assembly line work.
Although radiologists who work in rural or small hospitals or free-standing
centers may interpret the output of many visualization technologies and
focus on a wide range of anatomy, there is a broader trend toward
fragmentation and specialization. In large, urban hospitals, radiologists may
interpret a range of anatomy, but focus on the output of one technology
(e.g., ultrasound, CT, and MRI). Conversely, radiologists in large hospitals
may concentrate on a particular area of the body produced by multiple
imaging techniques. Some radiologists, for example, specialize in neuror-
adiology and primarily translate brain scans into written reports.
Along with repetition and fragmentation, work in radiology is often
marked by an increase in volume in terms of both the number and
complexity of examinations. Each MRI exam includes a series of pictures.
although both routine and complex exams include multiple images, complex
exams can produce even more images, and they can also involve additional
techniques such as the use of a contrast medium. At one site I observed,
radiologists read between 20 and 45 exams per day – a figure that is up from
previous years. Of these exams, many were also more complex and required
more work by the radiologist. The trend of increasing average workload per
radiologist is taking place across many sites in the United States (Bhargavan &
Sunshine, 2005, p. 926; Lu & Arenson, 2006; Matin et al., 2006).
Radiologists who work with MRI in particular experience significant
increases in workload, which is due in part to rapid growth in the
technology’s use (Applegate & Rumack, 2003).
The radiologists I interviewed are well aware of the transformation in
productivity, and some talked about it openly. As one radiologist stated,
‘‘Over the past few years productivity has become more of an issue.’’ When
I asked another respondent if there was pressure from the hospital
administration to see patients quickly, he responded, ‘‘Yeah. Well, to see
lots of patients. Doesn’t matter how long you take. It’s the volume they
want.’’ Radiologists can choose how long to spend with a particular case or
to stay longer at work if they want to spend more time on examinations.
What counts is overall volume.
The increase in volume affects radiologists and technologists differently.
Radiologists have more control over the way they accomplish their work.
Neuroimaging Production in Clinical Practice 87

They have a list of examinations that need to be interpreted that day; yet,
within that constraint, they can choose when and how long to spend on each
case as well as the order of exam interpretation. They can also choose when
and why to take breaks, since their work is independent of patient flow.
Patients in the waiting room do not get backlogged if there is a delay in
interpretation.
Radiologists also have more control over their schedule because they
primarily work for themselves as individuals or in groups distinct from the
hospital or imaging center, and they can decide how much they want to
earn. This occurs because radiologists receive income from health insurance
providers or from patients for each procedure performed. Those who work
by themselves receive the money generated by reading fees, which is the
component of imaging bills that reimburse radiologists for their work. For
those in radiology groups, salaries come from the pooled income obtained
by these fees, which are then distributed to members of that group.
Radiologists can thus partly control production pressures by deciding to
hire more physicians, though that means less income for each radiologist.
One doctor explained how radiology groups negotiate productivity:

How much pressure we are under is partly a function of our own group. We are not
hospital employees. We are an independent group. So how much stress we are under is
partly a function of how big we want to be. A large component of our practice is fee for
service. So if you want to read more, you get more. You read less, you get less. And so
we have a fairly compatible group in terms of how hard we want to work and some
groups work harder and some groups don’t work as hard.

Thus, the group decides what is an acceptable volume of work (and thus
income), and members comply.
Radiologists, however, do not have complete control over production in
the United States. Diminishing reimbursement rates, a common trend in
medicine, require radiologists to increase volume to maintain their standard
of living. Reimbursement fees are typically at their highest when a medical
technique is first introduced to clinical practice. This occurs because
physicians and administrators primarily set the fee and there is little
competition from other suppliers. As time passes, health insurance
providers, especially through the efforts of Medicaid and Medicare
representatives, decrease what they are willing to pay for a particular
procedure. This review, coupled with the increasing availability of a
procedure, brings down reimbursement rates, which means physicians must
perform more procedures to maintain the same income. ‘‘We do ultimately
feel it because there is a tendency to squeeze and if you want to maintain a
88 KELLY JOYCE

certain income level, you certainly have to be more productive than in the
past,’’ a radiologist explained. Here, a tendency to squeeze refers to lower
reimbursement rates.
In addition to approaching their work with an emphasis on production
and efficiency, radiologists have also adopted assembly line language to
describe what they do. Like technologists, the radiologists I interviewed
discussed their work in terms of productivity, volume, and efficiency.
During one conversation, for example, a radiologist used factory metaphors
to discuss trade-offs between using an open machine, which can potentially
decrease the length of an exam since less time is spent soothing patients’
anxiety, and the fact that open machines usually have low-field magnets.
Lower-field magnets require that patients spend more time in the machine to
get an acceptable image. ‘‘You know ironically, you think open magnets, it’s
not really a shortcut, because the exam takes longer because the magnet is
lower field strength,’’ he said. ‘‘So it’s not a throughput thing. It’s not like
the radiologist can say, ‘Oh I have an open magnet, I can bang people
through.’’’ Even though open MRI machines may require less patient
management, radiologists are unable to ‘‘bang people through.’’
Radiologists frequently discussed ways to decrease the length of exams as
a way to increase efficiency and productivity. One radiologist noted, ‘‘I have
tried to cut back here. Become more cost-effective. I came from a practice
where we did three patients per hour on the magnet. Here we do one every
forty-five minutes.’’ Other radiologists also thought in terms of money and
productivity; one explained, ‘‘Every day the magnet didn’t generate income,
we’re losing money.’’ The use of economic terminology here signals that
physicians are aware of the emphasis on production and think about their
work in these terms.
Another group also benefits from shorter examinations: patients. Yet, while
patients certainly prefer a shorter stay at an MRI facility and in an MRI
machine, their experience was seldom mentioned as a reason to cut the length
of an exam. Only one physician mentioned that shorter exams are more
comfortable for patients. The majority of physicians I interviewed evaluated
the length of the scan solely through the lens of cost and efficiency.

THE NEGOTIATION AND RESISTANCE OF

PRODUCTION PROCESSES

Despite a broader institutional emphasis on productivity, and technologists’

and radiologists’ own understanding of their work in these terms, these
Neuroimaging Production in Clinical Practice 89

professionals simultaneously resist reducing their work to a question of

volume, speed, and repetition. Technologists, for example, interact with
patients on an emotional level despite the emphasis on speed and
productivity. In fact, the technologists I interviewed and observed
considered emotional labor an essential part of the job. As one technologist
explained, ‘‘Definitely number one in radiology, in anything, it should be
compassion. That’s a big plus for patients when they come in. They are
scared. I think that needs to be number one.’’ Working with patients who
have been or are about to be diagnosed with serious illnesses requires strong
interpersonal skills. The technologists I interviewed valued this aspect of
their job even though work conditions made it harder to implement.
The emotional labor that is so intrinsic to technologists’ work challenges
assumptions about masculinity. Men constitute approximately 40 percent of
MRI technologists, which contrasts with other imaging fields such as X-ray
or ultrasound where they represent approximately 25 percent (Harris, 2006).
In addition, the work of technologists includes lifting bodies, understanding
science, and commanding complicated technology – all activities broadly
perceived as masculine. Thus, MRI technologists engage in activities
understood as masculine yet value and perform care-giving work. This
active emotional labor occurs despite cultural understandings that link
bodies and activities coded as masculine to intellectual or physical rather
than emotional work.
In my fieldwork, technologists demonstrated a strong commitment to
emotional labor. This commitment could be seen in the way technologists
interact with patients. As indicated above, efforts were made to soothe
patients during the scanning procedure, and between scans, for example,
they would ask the patients how they were doing and offer words of
encouragement; a typical phrase was: ‘‘The next scan will be four minutes.
You are doing great.’’ After an exam was completed, technologists took the
time to let the patient reorient themselves before helping them on their way.
They often helped people to balance and feel connected.
Other evidence of the workers’ commitment to emotional care was seen in
their consideration of the patient’s emotional needs. One member of the staff,
for instance, brought plastic rosary beads into work so that Catholic patients
could bring them into the magnet if they desired. This person explained to me
that he thought of doing this after a nun had come in for an examination. The
nun brought her rosary beads to help her through the exam, but they
contained metal so she was unable to bring them into the machine. The nun’s
experience caused the worker to wonder how the emotional needs of Catholic
patients could be taken into account should the situation arise again. On his
90 KELLY JOYCE

own time, he bought plastic rosary beads and brought them to work. This
respondent’s sympathy for and willingness to use his own time to address
the emotional needs of patients was mirrored by other technologists who
took care of people’s well-being in a myriad of ways. The ability of most
technologists to still make time for emotional labor in a system that primarily
recognizes speed and volume demonstrates how individuals are simulta-
neously enabled and constrained by institutional contexts. Assembly lines are
populated by people and machines – both of which continually exceed health
care’s emphasis on predictability, repetition, and volume.
In addition to valuing emotional labor, technologists also resisted the way
in which the organization of their labor reduced them to a cog in the
machine. Wherever there was room for creativity, technologists often took
advantage of it; for example, when speaking to patients in the machine
through a microphone on a computer keyboard. Much like radio deejays,
technologists develop their own personal style to communicate with the
patients via the audio technology. One technologist, for example, used a
soothing, deep voice to speak to the individuals in the machine. Another
used a booming, welcome-to-the-carnival type of voice. This man would
lengthen vowels stretching the words out. ‘‘Aaaaalriiiighty,’’ he would say.
‘‘Take a deep breath. Take another deep breath, and hold it.’’ These voices
were not used when interacting with patients face to face. Instead, they were
personas created by the technologists for a specific situation.
The radiologists I encountered had three main strategies for resisting the
mechanization of their labor and bringing creativity into their work. First,
radiologists countered the emphasis on volume by choosing group practices
that agree to accept a patient load that allows them to work at a reasonable
pace. As noted earlier, radiology groups can enjoy a slower pace of work if
they hire more radiologists to share the interpretation work. Second,
radiologists employed at university-affiliated hospitals challenged the
monotony of repetitious work by taking lower paying jobs at academic
institutions instead of working in private free-standing clinics or non-
university affiliated hospitals. Such positions allowed them to expand their
labor to include research and teaching as well as interpretation work.
University-based radiologists take a cut in pay in exchange for being able to
do varied tasks, but the ones I spoke with felt that, for the most part, it was
well worth it. They got to conduct research on new imaging applications and
think about medical imaging from the perspectives of residents, referring
physicians, and policymakers. Such actors all count on the work done by
university radiologists and physicists as their research furthers the field and
evaluate changes in imaging use.
Neuroimaging Production in Clinical Practice 91

Finally, radiologists from all types of employment structures disrupt

assembly line monotony through bringing individuality and creativity into
their written reports. Although the general format of the report is
standardized, radiologists’ choice of words and overall interpretation allow
individual expression. One radiologist, for example, went for dramatic and
unusual interpretations. When he interpreted an image, he looked for
something that would make his report stand out; for instance, he might
point out an unusual anatomical finding that would not affect the
individual’s health. Another radiologist individualized his reports by
pointing out ‘‘a little something extra’’ and used evocative language to do
so. Summing up the desire to add uniqueness to the otherwise monotonous
task of writing reports, a radiologist explained, ‘‘Each radiologist has their
own style. You can usually pick out who did a report.’’

PROFESSIONAL HIERARCHIES: LIFE ON THE

ASSEMBLY LINE

Even as technologists and radiologists individually resist the assembly line

practices that structure their work, professional and economic hierarchies
help produce an isolated form of labor that simultaneously reflect the
conveyer-belt nature of MRI facilities and enable it to function. These
dynamics ensure that each will see the other as opponents, not as members
of the same stressed American workforce. One radiologist called attention
to this when he described the relation between the groups as one of ‘‘warring
tribes.’’ The hierarchy and separateness of the two occupations leave them
on opposite sides of a vast divide.
The appearance of doctor–technologist relations initially seemed egalitar-
ian at the institutions that I observed, and radiologists and technologists
often addressed each other by first names. Yet despite this appearance of
equality, a professional, class-based hierarchy still divides radiologists and
technologists. As one technologist explained, ‘‘The hierarchy is still there.
Definitely. You better believe it. It’s externally friendlier. But when push
comes to shove, if it’s the doctor’s word against the tech’s word, the doctor
wins.’’
The fact that the physician’s view outweighs that of the technologist
can also be seen in expressions of anger and irritation. Both radiologists
and technologists find imaging clinics a challenging place to work. Although
the emphasis is on production and volume, the unpredictability of
92 KELLY JOYCE

emergencies, bodies, and complex technology often cause production to go

awry. I asked two technologists how they would describe their job, and both
immediately shouted back, ‘‘Frustrating!’’ Granted, all workers experience
frustration. But, like any hierarchical work setting, the pecking order of a
unit dictates who can lose their temper when things do not go according to
plan. Only radiologists and referring physicians are permitted to get angry
and lose their tempers in public. Furthermore, their rank in the hierarchy
means that they can yell at technologists. In contrast, technologists are not
allowed to shout at physicians or in public; if they do, they risk their job.
Economic, social, and physical distances all contribute to the pecking
order of an imaging unit. Income differences between radiologists and
technologists are especially pronounced. Regional differences in insurance
markets and one’s professional affiliation (e.g., an academic setting versus a
private imaging center) contribute to differences in radiologists’ annual
income (Mitchell & Sunshine, 2002). For example, radiologists who own
imaging centers can make anywhere from $300,000 starting salary to
$800,000 per year as they become full partners in the center whereas
radiologists who work at university hospitals may earn closer to $200,000–
$300,000 each year (Merritt Hawkins, 2010). Thus, full-time radiologists can
earn anywhere between $200,000 and $800,000 in the United States –
amounts that are similar to other physician specialties (e.g., neurology on
the lower end, surgery on the higher end) but are significantly higher than
full-time technologists’ salaries.
In 2008, the median salary for technologists was $64,415 with states
reporting some variation due in part to the cost of living expenses and the
strength of labor movements (American Society of Radiologic Technolo-
gists [ASRT], 2010, p. 51). Many of the technologists I observed also
worked overtime, which can add anywhere from $100 to $10,000 per year,
depending on how many extra hours are worked. Consequently, the lowest
paid radiologists earn double what the average technologist earns, whereas
the highest paid radiologists make 10–12 times the annual salary of
technologists. The profound economic distance between the two professions
is both caused and compounded by differences in cultural and educational
capital.
To begin with, radiologists typically have more formal education than do
technologists. Radiologists complete four years of college, four years of
medical school, plus a three-year residency in radiology. In contrast,
technologists have a high school degree and may have completed a two-year
radiologic technologist program. Although some technologists have com-
pleted a bachelor degree, they are a minority (ASRT, 2010, p. 127). Such
Neuroimaging Production in Clinical Practice 93

differences create two distinct social worlds with accompanying diversity

in leisure activities, neighborhoods, access to schools, and consumption
choices.
The distance between radiologists and technologists is further emphasized
architecturally with physical space in American imaging units. Each
occupation has its own area of work. Technologists work near and with
the MRI machine. Radiologists work in the reading room where they
interpret examinations. Although each ventures into the other’s territory,
individuals spend the majority of the working day in their own spaces.
In my fieldwork, the vast social, economic, and physical distances between
the two groups created two distinct categories that shaped how each
profession viewed and discussed the other. These discussions reflect both the
hierarchical work force and the tension that arises from a speeded up work
pace. Radiologists primarily discussed technologists’ personalities and job
performance. Some radiologists critically analyzed the character flaws of
technologists while in the privacy of the reading room. One radiologist
exemplified this practice when he said ‘‘What a flake,’’ after the technologist
delivered a film and left the reading room. Another time, a technologist left
the reading room, and a radiologist stated, ‘‘He’s so passive aggressive. I am
sick of dealing with him.’’ This type of quick negative personal evaluation
was common in my fieldwork.
Radiologists also critically analyzed technologists’ work among them-
selves. For example, one radiologist I observed was quick to blame
technologists if an image came out poorly. Pointing toward lack of skills and
bad decisions about image parameters, the radiologist thought a faulty
image resulted from technologists’ blunders. Yet if the image quality was
excellent, this same doctor did not credit technologists. Instead, in response
to my questions or to other radiologists’ comments, he said things like: ‘‘He
just ran the protocol. He didn’t do anything to produce the image,’’ or ‘‘The
technologist’s contribution doesn’t matter. It’s not important.’’
Of course, not all radiologists engaged in this type of discussion. A few of
the radiologists I observed expressed sympathy toward the technologists and
defended them from unwarranted criticism. In one case, the technologist
followed a written order and scanned a particular part of the brain. The
written order turned out to be incorrect. Instead of taking responsibility for
the lack of clarity in the written request, the radiologist blamed the
technologist, noting that he did not check the patient’s previous examina-
tion to determine the exact area of the brain to be scanned and thus screwed
up. Another radiologist countered the accusation by stating, ‘‘Part of the
problem is the techs don’t have enough time to check previous scans.’’
94 KELLY JOYCE

He then suggested that it was up to physicians to be clearer in their requests.

This type of response was unusual in my fieldwork. Radiologists commonly
vented irritation and stress by talking about the technologists’ inferior skills
and difficult personalities.
When alone, technologists also talked about the radiologists. These
conversations revolved around who was good to work for, who lacked
patience, and who was in charge that day. This content related to their lower
position in the hierarchical relation between the two groups. The
radiologists have the power to publicly evaluate and reprimand technolo-
gists, whereas the reverse is not true. As a result, technologists need to be
able to predict radiologists’ behavior. Negotiating the work day means
taking radiologists’ personalities into account, and the discussions I
observed were used to develop strategies to do this.
The technologists I observed also developed slang that temporarily
reversed the professional hierarchy between themselves and physicians.
‘‘Magnet starved’’ and ‘‘magnet panic’’ were two phrases used by
technologists to discuss the anxiety physicians displayed when the MRI
machine was not working. Calling attention to its most powerful
component, technologists and radiologists often refer to the machine (and
at times by extension the examination room) as ‘‘the magnet’’ and the other
components and devices of the machine are forgotten. According to
technologists, radiologists, and referring physicians ‘‘freak out’’ when the
MRI machine is down. When I asked, ‘‘Why?’’ one technologist explained:
‘‘A lot of diagnostic skills have been lost to imaging technologies.’’ Another
said, ‘‘Liability. Docs need to cover their asses.’’ Although the pressure to
produce revenue and efficiency also contribute to ‘‘magnet panic,’’ the use of
such terms allows technologists to laugh at superiors’ behavior.

GUARDIANS OF THE MAGNET

Technologists’ duties as guardians of the MRI machine reflect a further

twist in the hierarchical structure of the medical workplace that gives
physicians and nurses more status than technologists. Like other assembly
line work, producing MRI scans involves dangerous, powerful machines. As
frontline workers on the assembly line, technologists serve as the ‘safety’
gatekeeper to the examination room. Gatekeepers are required because the
superconducting magnet in the MRI machine causes any metal object
brought into the examination room to fly swiftly toward the machine at
speeds up to 40 miles an hour and stick to it. Traveling at this speed, metal
Neuroimaging Production in Clinical Practice 95

objects can hurt individuals in the room, as well as damage the machine
itself. If a person carrying metal objects goes into the room, the technologist
is held responsible and could be fired.
Technologists are well aware of the power of the superconducting magnet,
as well as their responsibility to guard it. As one technologist joked, ‘‘We are
guardians of the magnet. You must respect the magnet.’’ As gatekeepers,
technologists constantly confront other health care professionals to ensure
that they do not enter the room with metal objects. This dynamic means that
technologists repeatedly challenge individuals who have more status than
they do, which can be intellectually and emotionally challenging.
One technologist recalled an incident in which a nurse ignored the
technologist’s safety questions:
I remember one time a nurse came down with a critical care patient. She was very quick
with me. Very irritated. I know I had asked her about scissors and everything, because
they [the nurses] are always carrying scissors around. She went around to the back of the
magnet. The patient was in the magnet and I heard this ‘‘dang.’’ I’m like, ‘‘What was
that?’’ ‘‘Oh, just my scissors.’’ And I am like ‘‘Thank God it didn’t hit the patient.’’ But it
stuck to the side and I was able to grab it off. I just wanted to shake her. She could have
hurt the patient. I am watching out for all of our welfare.

The technologist’s lower status in the interaction meant that first, the
technologist had to negotiate the nurse’s irritability while simultaneously
trying to screen the nurse for entrance into the unit, and second, the nurse is
less likely to listen to the technologist. The nurse’s dismissal of the
technologist’s questions compromized the safety of everyone in the room.
Some technologists employ methods to accommodate both the workplace
hierarchy and the need to screen physicians and nurses. Such strategies
acknowledge the authority of these individuals while still trying to keep
patients and workers safe. A speaker at a conference I attended, who was a
technologist, told a story that illustrates one method of accommodation.
After apologizing to any nurses or doctors in the audience, she said, ‘‘I’ll tell
you how I deal with nurses and doctors, who are also a pain in the ass. I’m
passive aggressive so I say [she begins speaking in a sugary sweet voice],
‘Okay. Let’s split the difference. You leave the scissors and stethoscope here,
and you can take your credit cards and watch into the magnet.’ ’’

CONCLUSION

Neuroscience relies on medical imaging which in turn involves precision,

repetition, and specialization. Using a complex array of computer equipment,
96 KELLY JOYCE

magnets, and coils that is collectively known as MRI technology,

technologists and radiologists produce brains and bodies through repetitive
processes on the neuroscientific clinical knowledge assembly line. In the MRI
unit, the brain is one organ of many that is scanned, translated, and
produced. Neuroimages (after being ordered by the referring clinician) are
created in an image production line where scans of brains, spinal cords,
spleens, and other body parts are all fashioned. Radiologists then interpret
scans, translating the pictures into written reports. In the clinic, the brain is
not the exemplar for human identity or illness, but rather is one part of many.
The emphasis on productivity, volume, and speed permeate many areas of
US health care, and this chapter demonstrated how these values impact
neuroimaging work in clinical medicine. The radiologists and technologists I
interviewed and observed both internalized and resisted the factory like
organization of their work. On the one hand, health care workers used
productive language to describe their work, goals, and patients. On the
other hand, these same professionals resisted the emphasis on predictability,
volume, and repetition by bringing creativity and care to their work. The
efficient medical workplace further requires the production of docile
patients, who are essential to ensuring a smooth work flow.
Medical sociology has a long history of reframing health care profes-
sionals as workers (see, e.g., Bosk, 2003; Conrad & Schneider, 1992;
Diamond, 1992; Timmermans & Almeling, 2009). Such scholarship de-
monstrates how professional interests and hierarchies and broader societal
transformations in the organization of labor shape medical work. This
chapter illustrated how neuroimaging work occurs in a highly stratified
workplace where antagonism and hierarchy structure interactions between
radiologists and technologists. Although radiologists and technologists may
make individual efforts to bridge the divide, the organization of work as a
hierarchical assembly line creates an isolated form of labor that ensures
division. This division means that technologists (like lower status profes-
sionals in other health care settings) must develop strategies that acknowl-
edge their subordinate position in the hierarchy while still protecting
patients and health care workers from the dangers associated with MRI
machines.
This chapter focused on neuroimaging production in the United States.
Assembly line modes of production structure imaging production in the
United States while cultural, political, and economic factors such as fear of
litigation and fee-for-service reimbursements push the assembly line work
faster and faster. The emphasis on speed may not be as pronounced in other
countries that have different payment schemes or different cultural
Neuroimaging Production in Clinical Practice 97

definitions of what equals good neurological care. Future research should

use a comparative frame to better understand how local contexts and
policies shape neuroscientific scan production.

REFERENCES
American Society of Radiologic Technologists [ASRT]. (2010). Radiologic technologist wage and
salary survey 2010. Albuquerque, NM: American Society of Radiologic Technologists
Publications.
Applegate, K. E., & Rumack, C. M. (2003). Workforce problems and strategies. Decision in
Imaging Economies May 2003. Available from http://www.imagingeconomics.com/
library/200305-02.asp. Accessed August 23, 2011.
Barley, S. (1986). Technology as an occasion for structuring: Evidence from observations of CT
scanners and the social order of radiology departments. Administrative Science
Quarterly, 31(1), 78–108.
Barley, S. (1990). The alignment of technology and structure through roles and networks.
Administrative Science Quarterly, 35(1), 61–103.
Beaulieu, A. (2002). Images are not the (only) truth: Brain mapping, visual knowledge, and
iconoclasm. Science, Technology, and Human Values, 271, 53–86.
Bhargavan, M., & Sunshine, J. (2005). Workload of radiologists in the United States in
2002–2003 and trends since 1991–2. Radiology, 236(3), 920–939.
Bosk, C. (2003). Forgive and remember: Managing medical failure (2nd ed.). Chicago, IL:
University of Chicago Press.
Burri, R. V. (2008). Doing distinctions: Boundary work and symbolic capital in radiology.
Social Studies of Science, 38, 35–62.
Cohn, S. (2004). Increasing resolution, intensifying ambiguity. Economy and Society, 33(1),
52–76.
Cohn, S. (2008). Petty cash and the neuroscientific mapping of pleasure. BioSocieties, 3(3),
151–163.
Conrad, P., & Schneider, J. (1992). Deviance and medicalization: From badness to sickness.
Philadelphia, PA: Temple University Press.
Diamond, T. (1992). Making gray gold: Narratives of nursing home care. Chicago, IL:
University of Chicago Press.
Draper, J. (2002). ‘It was a real good show’: The ultrasound scan, fathers, and the power of
visual knowledge. Sociology of Health and Illness, 24(6), 771–795.
Dumit, J. (2004). Picturing personhood: Brain scans and biomedical identity. Princeton, NJ:
Princeton University Press.
Foucault, M. (1979). Discipline and punish: The birth of the prison. New York: Random House.
Gross, S. (2009). Experts and ‘knowledge that counts’: A study into the world of brain cancer
diagnosis. Social Science and Medicine, 69(12), 1819–1826.
Harris, R. (2006). Director of research. American Society of Radiologic Technologists. Personal
correspondence.
Joyce, K. (2008). Magnetic appeal: MRI and the myth of transparency. Ithaca, NY: Cornell
University Press.
Joyce, K. (2010). The body as image: An examination of the economic and political dynamics of
magnetic resonance imaging and the construction of difference. In: A. Clarke, J. Fosket,
98 KELLY JOYCE

L. Mamo, J. Fishman & J. Shim (Eds.), Biomedicalization: Technoscience, health and

illness in the United States (pp. 197–217). Durham, NC: Duke University Press.
Kachalia, A., Choudhury, N., & Studdert, D. (2005). Physician responses to the malpractice
crisis: From defense to offense. Journal of Law, Medicine, and Ethics, 33(3), 416–428.
Lu, Y., & Arenson, R. (2006). The academic radiologist’s clinical productivity: An update.
Academic Radiology, 12(9), 1211–1223.
Matin, A., Bates, D., Sussman, A., Ros, P., Hanson, R., & Khorasani, R. (2006). Inpatient
radiology utilization: Trends over the past decade. American Journal of Roentgenology,
186(1), 7–11.
Melendez, J., & McCrank, E. (1993). Anxiety-related reactions associated with magnetic
resonance imaging examinations. JAMA, 270(6), 745–747.
Menzies, H. (2005). No time: Stress and the crisis of modern life. Vancouver, British Columbia:
Douglas & McIntyre, LTD.
Merritt Hawkins. (2010). Summary report: 2010 Review of physician recruiting incentives. Irving,
TX: AMN Healthcare Publication.
Mitchell, J., & Sunshine, J. (2002). Determinants of differences among radiologists in starting
salaries. American Journal of Roentgenology, 178(5), 1067–1073.
Moan, R. (2010). Virtual radiologic buys out NightHawk, says its an ideal match. Diagnostic
Imaging, September 27.
Payer, L. (1996). Medicine and culture: Varieties of treatment in the United States, England, West
Germany, and France. New York: Henry Holt and Company, Inc.
Prasad, A. (2005). Making images/making bodies: Visibilizing and disciplining through
magnetic resonance imaging. Science, Technology and Human Values, 30(2), 291–316.
Segal, D. (1995). Rockville firm makes an open, not shut, case for MRI. The Washington Post,
December 18, p. F9.
Skler, K., Penn-Jones, K., Cataldo, M., Conner, R., & Zerhouni, E. (1991). Music enhances
patient comfort during MRI. American Journal of Radiology, 156, 403.
Sward, K. (1948). The legend of Henry Ford. New York: Rinehart.
Thorpe, D., Owens, R. G., Whitehouse, G., & Dewey, M. E. (1990). Subjective experiences of
magnetic resonance imaging. Clinical Radiology, 41(4), 276–278.
Timmermans, S., & Almeling, R. (2009). Objectification, standardization, and commodifica-
tion: A conceptual readjustment and research agenda. Social Science and Medicine,
69(1), 21–27.
A STONE IN A SPAGHETTI BOWL:
THE BIOLOGICAL AND
METAPHORICAL BRAIN IN
NEURO-ONCOLOGY

Sky Gross

ABSTRACT

This chapter presents findings of ethnographic work in a neuro-oncology

clinic in Israel. It is claimed that patients, close-ones and physicians
engage in creating metaphorical visions of the brain and brain tumours
that reaffirm Cartesian dualism. The ‘brain talk’ involved visible and
spatial terms and results in a particular kind of objectification of the
organ of the self. The overbearing presence of visual media (i.e., magnetic
resonance imaging, computed tomography, angiographic studies) further
gave rise to particular forms of interactions with patients and physicians
where the ‘imageable’ (i.e., the image on the screen) became the
‘imaginable’ (i.e., the metaphor). The images mostly referred to a domain
of mundane objects: a meatball in a dish of spaghetti, a topping of olives
over a pizza, the surface of the moon, a stone, an egg, an animal, a dark
cloud. Furthermore, conversations with family members showed that
formal facts and informed compassion were substituted by concrete
representations. For them, and especially for the patient, these
representations redefined an ungraspable situation, where a tumour – an

Sociological Reflections on the Neurosciences

Advances in Medical Sociology, Volume 13, 99–119
Copyright r 2011 by Emerald Group Publishing Limited
All rights of reproduction in any form reserved
ISSN: 1057-6290/doi:10.1108/S1057-6290(2011)0000013009
99
100 SKY GROSS

object – can so easily affect the organ of their subjectivity, into something
comprehensible through the materialistic, often mechanistic actions of
most mundane objects. This, however, also created alienated objects
within the boundaries of their own embodied selves. Patients, on the one
hand, did not reject their own sense of ‘own-ness’, of having a lifeworld
(lebenswelt) as subjective agents, but on the other, did talk about their
own interiors as being an ‘other’: an object visible, observable and
imaginable from a third-person standpoint – a standpoint drawing its
authority from biomedical epistemology and practice.
The brain is a world
consisting of a number of unexplored continents
and great stretches of unknown territoryy.
To know the brain is equivalent to ascertaining
the material course of Thought and Will,
to discovering the intimate history of Life
in its perpetual duel with external forces.
–Santiago Ramon y Cajal (1852–1934), neurologist

Recent studies in the social sciences and humanities have provided us with
endless illustrations of the centrality of the brain and ‘‘the paramount cultural
and material importance of the mind’’ (Webb, 1998, p. 1) in Western culture
and biomedicine. Nowhere is this more apparent than in considerations of
‘brain dead’ humans. Such individuals tend to be viewed as having lost their
personhood, and come to be referred to as ‘‘beating heart cadavers’’ or
‘‘neomorts’’ (Kaufman, 2000; Lock, 2002; Ohnuki-Tierny et al., 1994;
Youngner, 1989). The expulsion from society of brain injured or brain dead
individuals has further been associated with the particular features of the brain
as an organ rich in meanings that are central to Western society (Webb, 1998).
Popper and Eccles’ (1977, p. 177) point to the almost truism according to which
a transplantation of a brain into another’s body would amount to the complete
‘‘transference of the mind, of the self’’ into the latter. This idea, says Vidal
(2009, p .6), amounts to the modern doxa that ‘‘the brain is the only part of the
body we need in order to be ourselves’’. This is further exemplified in the notion
of the ‘‘brain in a vat’’ (Bernal, 1929; Dennett, 1979; Putnam, 1981) – human
but not embodied – and science-fiction themes of brain swapping (Vidal, 2009).
Then, in the Western world, the brain – rather than the body as a whole – seems
to hold supreme in contemporary definitions of selfhood and subjectivity.
Commonsense suggests that, if the brain is so significant to the perception
of our selves, facing a brain tumour diagnosis should demand the most
complex types of (re)conceptualisation of this ‘self’. This chapter, however,
shows a different picture. Most patients with brain tumours tend to see the
A Stone in a Spaghetti Bowl 101

diseased brain as yet another diseased organ, all the while admitting that it is
probably the site of ‘‘who they are’’ (cf. Pickersgill, Martin, & Cunningham-
Burley, 2011). This, I will show, is based on a particular form of
objectification, where the ‘self’ is split into two elements: one that is indeed
grounded in the brain, and another that is completely separated from the
soma, and which may reflect on neurological pathology as if the brain was
just like any other object, biological or otherwise.
I shall further draw on elements of mind-body philosophy to claim that
processes of visualisation of brains as objects with distinct and sensuous
qualities run along a Cartesian logic of transforming ‘res cognitas’ into ‘res
extensa’. Indeed, if superposed onto ontological dualism, an ethereal idea of
the ‘brain’ could then be assigned properties of ‘matter’ by converting it into
a body spread in space and holding assignable qualities: a res extensa. In
other words, it is the visible and the locutionary that allow for a
materialisation (or ‘objectification’) of the non-material fraction of this
Cartesian self. Patients will thus adopt biomedical conceptualisations –
where spatialisation and sight are key – and apply self-objectification to the
organ of the self, to the organ of their selves.
In the neuro-oncology clinic considered here, Cartesian dualism is
ubiquitous. As shall be elaborated on throughout this chapter, it involves
the use of spatial metaphors and media to portray the cerebral organ in
doctor-patient interactions. On the one hand, creating images in the form of
narratives and metaphors – ‘imagining’ – translates what one patient
referred to as the ‘‘thing in my head’’ into a mundane object, approachable
through non-expert forms of knowing. On the other hand, ‘imaging’ in the
technoscientific sense may render a naturalistic, commonsense form of
knowing into analytic, authoritative objectification, and thus transforming a
non-scientific ‘object’ into one fully approachable to scientific exchange
(Lynch, 1988). Both do not only create the image but also create the object
of the image: the image becomes the object in and of itself. This chapter
considers these exchanges as based either on objectifying metaphors, or
visual and two-dimensional technological apparatus. To this end, I will
bring empirical evidence to bear on the ways conceptualisations of selfhood
and the brain articulate with one another.

METHODOLOGY

In the first half of 2006, I followed the work of members of a neuro-

oncology outpatient clinic situated in a large hospital in Israel. The team
102 SKY GROSS

consisted of four neuro-oncologists, a head nurse, a social worker, and a

neuropsychologist. The neuro-oncologists were observed during routine
consultations, in rounds in the inpatient ward, and in the course of three
weekly professional conferences. A lengthy period of negotiation and
clarification with the head of the clinic led to the gradual gaining of the
staff’s confidence. Formal permission from the hospital’s Helsinki ethics
committee allowed me to begin my work. By the end of this process, I was
accorded access to the innermost stages of the clinic.
I spent some 20 hours a week at the clinic, where I gathered extensive field
notes (simultaneously translated and composed in English) along with both
formal interviews and casual exchanges with staff members, patients and
close-ones. Forming a small proportion of the data collected, thirteen
formal interviews – four with neuro-oncologists, two with family members,
and seven with five different patients – were later transcribed verbatim. In
the extracts from these interviews that I draw on for this analysis,
anonymity is ensured by the use of pseudonyms, for both patients and staff.
The field data was analysed so as to identify recurrent themes. I was
especially concerned with the dynamics of the exchange of information
among different team members and patients. In line with ‘grounded theory’
methodological approaches, the analytical scheme was built and refined in
constant conjunction with the empirical data, and the data itself came to be
read with this scheme in mind.

SOMETHING ABOUT BRAIN TUMOURS

A brain tumour presents itself through various neurological signs and

symptoms, which may include epileptic seizures, total or partial paralysis,
speech malformations, visual disturbances, loss of sensation in the limbs, or
personality changes. Reporting diagnostic information such as biopsy and
magnetic resonance imaging (MRI) studies, along with clinical impressions,
allow neuro-oncologists to determine the locality of the tumour, its size, the
types of cells involved, and its degree of malignancy.
This process begins with the first encounter between neuro-oncologist and
patient. It starts with a fairly ritualistic intake of new patients, where the
neuro-oncologist assesses previous findings, gathers clinical history, and
performs a physical examination. Treatment options are deliberated among
a relatively wide array of biomedical professionals, from neurosurgeons to
radiologists to general oncologists. Routine assessments of cases are
typically performed in the course of three weekly conferences: one with
A Stone in a Spaghetti Bowl 103

the radiology experts, a second with the neurosurgery team, and a third
inner meeting. Patients attend the clinic up to once a week while under a
radiotherapy regime, and once a month when under chemotherapy. They
are typically referred to imaging tests every few weeks. As most brain cancer
patients remain uncured, diagnosis is literally a lifelong process.

Types of Tumours

Brain tumours can be classified as either primary – that is, forming in the
brain itself-or secondary (‘metastatic’) – originating from a cancerous
process elsewhere in the body. Tumours found in the brain typically do not
involve growth of nerve cells (unlike liver tumours, for instance, which do
involve the growth of liver cells), but rather of cells supporting neural
activity: glial cells. The largest group of primary brain cancers is referred to
as ‘gliomas’. Gliomas involve abnormal growth of glial cells and include
four main categories of tumours, based on the types of the underlying
cellular formation and the location of the tumour: ‘astrocytomas’ (the most
common), ‘ependymomas’, ‘medulloblastomas’, and ‘oligodendrogliomas’.
All tumours are assigned a ‘grade’, that is, a I–IV classification based on the
speed of growth, the presence of necrosis (dead tissue), the number of blood
vessels providing nutrients to the tumour, and the level of differentiation
(pathological deformation) of the cells. Grades I–II tumours are considered
benign, although they may become more aggressive at a later stage of
growth. Grades III–IV tumours are referred to as ‘anaplastic astrocytomas’
or ‘glioblastomas’, respectively. Anaplastic astrocytomas typically progress
to become glioblastomas (GBM), which are deadly tumours, often giving
the patient a life expectancy of mere weeks.

Treatment

The term ‘treatment’ in neuro-oncology may be misleading. With the

exception of a number of first grade tumours, and although it may take
decades, the progress of the mass is inevitable. Treatment is thus intended to
prolong life or to better the patient’s quality of life, rather than ‘cure’ the
disease. There are three main types of interventions, provided usually in this
order: surgical resection, chemotherapy and radiotherapy. Surgical inter-
vention is seldom able to remove the entirety of the mass’ tissues:
microscopic malignant cells almost always remain to begin the growth
104 SKY GROSS

anew. In most cases, the benefit of surgery must be weighted not only
against the risk involved in any serious operation, but against the
neurological deficits that may result from its inevitable assault on the
brain. Another form of treatment involves chemotherapy. The brain keeps
most chemotherapeutic agents out, through what is called the ‘blood brain
barrier’, which protects the brain from noxious intrusions. Temozolomide is
the one agent that is able to reach brain tissue and comes in a form of tablets
self-administered, at home. It does not cause hair loss and has in fact few
side-effects; thus, the patient may at this point be free of the typical ‘cancer-
look’ that affects self-definition and social stigma of cancer-afflicted
individuals. Radiotherapy is typically administered daily for a number of
weeks, in the course of which the patient is to meet the neuro-oncologist
weekly and give blood on a regular basis. Unlike Temozolomide-based
chemotherapy, radiotherapy causes several side-effects (the severity of which
depends on the dosage and areas being targeted), including hair loss,
extreme fatigue, burns on the scalp, oedema, and more. The series of
treatments is usually given once in the entire course of the disease. It does
not have remedial powers but usually does contribute to the shrinking of the
tumour or to a slowing of its growth.
Symptoms relief is another critical aim. Steroids are provided for the
relief of oedema, thereby allowing relief of epileptic seizures and in-
tracranial pressure (a situation that may be merely uncomfortable at first,
but will eventually cause death). Epileptic seizures are also treated with
anti-epileptic drugs, some of which must be continuously accompanied
with a monitoring of the active agent’s level in the blood. A major sign of
brain cancer is the loss of strength (paresis) or paralysis of one or more
limbs and/or enervated body parts. These symptoms may at times be
somewhat relieved with steroids-agents that are often devastating for
many body systems. Steroids further cause a typical bloated look, making
patients and those who surround them acutely aware of the deteriorating
quality of the condition. Palliative and supporting care is offered once the
treatment panoply has been exhausted. Here, neuro-oncologists can only
follow from a distance the care provided to the patient in a hospice or at
home.
There is relatively little pain involved in dying from a brain tumour,
unlike with most other types of tumours. The end may be uncomfortable,
when more basic functions begin to deteriorate, especially breathing.
However, in general, the process is gradual and loss of consciousness usually
appears before the patient has the chance to enter the more agonising stages
of dying and bodily deterioration.
A Stone in a Spaghetti Bowl 105

THE BIOMEDICALISED AND THE VISUALISED

Mind–body dualism have been accompanying Western society for centuries.

The development of modern science has further added to the conundrum by
assigning the body an ambiguous epistemological and ontological status:
while considered to be one object among others, it nevertheless holds onto
its singular position as the locus of subjective consciousness (Lanigan,
1995a, 1995b; Merleau-Ponty, 1962; Sartre, 1956). Social scientists have
repeatedly shown how biomedicine tends to refer to the body in terms of
matter, whilst overlooking subjective experience (Cartwright, 1995; Lock,
1997; Martin, 1994). Scholars have further associated biomedicine’s
practices and epistemological bases with stances of depersonalisation and
objectification of the patient (Scambler & Higgs, 1998; Scheper-Hughes &
Lock, 1987; Thornquist, 1997). This problematic is perhaps best exemplified
in Foucault’s writings:

The presence of disease in the body, with its tensions and its burnings, the silent world of
the entrails, the whole dark underside of the body lined with endless unseeing dreams,
are challenged as to their objectivity by the reductive discourse of the doctor, as well as
established as multiple objects meeting his positive gaze [y] thus the articulation of
medical language and its object will appear as a single figure. (Foucault, 1975, p. xi)

Arguably, this tendency toward objectification has seen biomedicine

centre its attention upon the body as a material entity (Dew, 2001;
Eisenberg, 1977; Mishler et al., 1981), where it is treated as a machine and
deemed observable through expanding scientific technologies and knowledge
(Arney & Bergen, 1984; Synott, 1992; Walters, 2004). This scientific reality
need not be in accordance with ‘everyday thought’: its objectivity is achieved
and not merely ‘‘experienced’’ (Bachelard, 1984 [1934]). It is the product of
the categories of thought, techniques and methodologies through which it is
asserted and by which it creates ‘‘objects of objectivity’’ (Boumans &
Beaulieu, 2004).
Yet, different actors (e.g., physicians from different specialities, or even
patients) within a given field may enact different ‘styles of reasoning’
regarding the same object, including varieties of deduction, experimenta-
tion, observation, and helpful analogies. Thus, by ‘looking’ at the same
‘thing’, a field may create quite distinct objects, or ‘kinds of entities’ – each
with its own boundaries, attributes, and relations with other objects
(Hacking, 1982, 1992). Such kinds of entities become truths once articulated
through the techniques of medical testing and evaluation.
106 SKY GROSS

One important way to do this ‘objectivity work’ involves visualisation,

which will stand at the centre of this chapter. Visualisation involves high
technology processes, including radiological practices, as well as use of
metaphors and analogies. Thus different ‘images’ – one in the sense of
‘imaging’, the other in the sense of ‘imagining’ – are key components in the
conceptualisation of brain, self, and pathological processes: all revealing the
‘‘dark underside of the body’’ (Foucault, 1975, p. ix).
Through several technological developments, namely in the field of
neuroscience, the last decades produced media through which the brain can
be visualised, creating seemingly ‘ready-to-read’ maps of the mind. Indeed,
brain scans seem to increasingly be replacing other explanatory representa-
tions of mental phenomena in most professional journals, and in the clinic
(Racine, Bar-Ilan, & Illes, 2005). This power is grounded by several broad
cultural stances, including the medicoscientific tendency to regard sight as
evidence, with ‘‘seeing’’ being almost inseparable from ‘‘knowing’’ (Lynch &
Woolgar, 1990; see also Draper, 2002; Dumit, 2004; Jenks, 1995; Joyce,
2006).Vision is then understood to be an unmediated perceptual source of
knowledge: images themselves purportedly reveal a map, detailing routes
that lead to non-interventional access to the truth (Foucault, 1963; see also
Cartwright, 1995; Daston & Galison, 1992; Knorr-Cetina & Amann, 1990).
Thus, although the MRI is necessarily a mediated view of the patient,
technicians and radiologists seek to eliminate this very mediation by
creating an object: the ‘thing’ that they look upon becomes the ontologically
asserted ‘real thing’ and make its subject transparent (Boumans, 2004;
Duden, 1993; Rohrer, 2007). As the visual is alleged to provide the most
authoritative access to the object of disease, radiology represents the
epitome of diagnostic science (Burri, 2008; Gross, 2009; Gunderman, 2005;
Joyce, 2008). In fact, some may claim that radiology makes things ‘‘more
real than real’’ or ‘‘hyperreal’’ (Baudrillard, 1988; Frank, 1992); that is,
more accurate than any direct assessment – including subjective assessments
by the patient (whom one may even consider as the object itself). Removing
the personal particularities of the patient enables a more clear-cut alignment
with existing nosological categories, thereby clearing what we might refer to
as the ‘fuzziness of reality’ and gaining a halo of pure science (Foucault,
1963; see also Bourdieu, 1977; Rosenberg, 1999; Thompson, 1995).
Supposedly ruling out interferences and interpretations not intended by
the reader (Ala, 2004; Bastide, 1990), MRI creates the artefact that will
replace the original ‘something’ and be present within the space in which the
clinical exchange occurs. Imaging techniques provide a language and a set
of artefacts (i.e., the black and white pictures so characteristic of the
A Stone in a Spaghetti Bowl 107

technology) that allow both patients and doctors to ‘speak of’ and represent
the disease. It is through processes of ‘‘translation’’ (Callon, 1986; Latour,
2005) that communication is made possible: by the mutual – albeit not
necessarily equal – adoption of a particular language and logic, of ways in
which the object is ‘talked about’. Within the setting discussed here, the
brain is spoken of through both mundane metaphors and concepts of
spatial extension. This, I believe, is also grounded on a long history of
spatialisation.

THE SPATIAL BRAIN

The Origins of the Spatial Brain

The actual scientific study of the brain and its relation with complex
behaviour may be viewed as commencing in the 1870s with Gall’s
phrenological theory, which linked brain structures to personality traits
(Barker, 1995). This theory (soon declared ‘pseudoscientific’) advanced an
idea according to which mental functions (37 overall) had a specific
topographical repartition on the cortex, with the most developed functions
forming a visible protrusion on the exterior of the skull. Thus, by feeling the
skull, the phrenologist will have access not only to the elusive brain but also
to the subject’s psychological realm.
Although short-lived, phrenology saw a golden age where it flourished
throughout Europe and the United States and enticed much attention in
both lay and scientific spheres (Hall, 1977). As well put by Grant (1968,
p. 299), it may well have owed its popularity to its alleged capacity to
‘‘understand and reveal the mind’s secrets at the touch of a hand, thus
solv[ing] at one stroke the problem of the mind’’, and to its proposing ‘‘a
complete and accurate picture of the nature of the mind and at the same
time defin[ing] and fix[ing] its functions’’.
Also in the nineteenth century, and equally interested in revealing the
functions of the mind in relation to the brain, researchers such as Broca,
Fritsch and Hitzig began to identify specific locations in the brain for functions
such as speech and sensomotor activity. Hughlings-Jackson followed with
the notion of the homunculus, where one could identify the somatopic
distribution of body parts along the motor cortex; that is, the representation of
the body over the outer layer of the brain. This reaffirmed a localised view of
brain activity and its possible representation of not only the human body, but
also the human mind – including thought, perception, feelings (Barker, 1995;
108 SKY GROSS

Kolb & Whishaw, 2003; Macmillan, 1996). While the phrenological under-
standing of ‘higher’ brain functions (such as creativity, imagination or
personality) still lingered, localisation was able to challenge a nebulous notion
of the mind as a vague spiritual essence, and assert its fundamental form as
purely material. Indeed, for Gall, the ultimate localisationist, one should
forever seek to ‘‘grasp the material conditions of the immaterial principle’’
(Gall, 1808, p. 5).
With a similar goal in mind, modern neuroscience collects data targeted at
describing precise locations correlating with thought, feeling and behaviour.
Indeed, while also incorporating other, non localisationist models, ‘‘the
issue of localisation in the brain is now, more than ever, a topic of
importance’’ (Bjaalie, 2002, p. 322). Such practices continue the phrenolo-
gical mission of reading the internal through the external, thus bringing the
invisible into sight. In its drive to quantify the qualitative and to make the
private public, the localisation of mental phenomena reflects a culture
structured by Cartesian thought.

Spatial Components of Brain Tumours

In the case of brain tumours, the placing of the pathological process within
the space of the body is key: a good clinician will have to ‘‘think
anatomically’’ (Good, 1994, p. 73). The clinical gaze requires the turning of
the body into ‘‘a space, whose lines, volumes, surfaces, and routes are laid
down, in accordance with a now familiar geometry, by the anatomical atlas’’
(Foucault, 1975, p. 8). ‘Textbook’ information very much reflects this
localisation tendency.
At the most basic level, the brain can be divided into six primary regions,
each controlling specific functions. The brain stem is the pathway between
the brain and the spinal cord, where sensory and motor nerves descend and
ascend from and to the rest of the body to controls visceral functions (heart
rate, digestion) and basic alertness. However, since so many nerves go
through the brainstem, pathologies associated with this area can cause
almost any form of symptoms. Above the brain stem is the cerebellum which
is associated with balance, posture, and eye movement. The frontal lobes are
responsible for organising thoughts, planning, problem solving, self-control
and moral judgment. The posterior parts of the frontal lobes also house
nerve cells that produce movement. Patients suffering from tumours in or
near the frontal lobes may exhibit motor deficiencies, but may also suffer
from extreme personality changes. Presence of pathology in the occipital
A Stone in a Spaghetti Bowl 109

lobes (located in the mid back of the brain) can cause partial blindness or
the inability to recognise shapes, colours, or faces. The parietal lobes are
located behind the frontal lobes, and at the top of the brain. They control
our sense of touch, our feelings and understanding of weight, size and
texture, as well as much of our cognitive comprehension of the world.
Tumours affecting the right parietal lobe can cause a lack of spatial
orientation and may hinder the ability to recognise one’s own body.
Tumours affecting the left parietal lobe can cause difficulty speaking or
difficulty understanding speech. Finally, the temporal lobes, located on the
right and left side of the brain (near ear level), help us distinguish smells and
sounds, and may be involved in the experience of fear. The right lobe is
primarily responsible for visual memory while the left controls verbal
memory.
As noted above in the ‘textbook’ like information, this focus on the body
as a map is derived from the superposition of the conceptual order of
disease, with its assigned logic of symptoms and nosological organisation,
onto the solid, present body: the ‘‘concrete body, that visible whole, that
positive plenitude that faces him – the patient’’ (Foucault, 1975, p. 9). This
order of disease thus advances a rational construct that defines relations
between first-hand experienced symptoms and objectively-reachable somatic
spaces, the flesh, the black and white MRI image. As shall be argued below,
the nature of the neuro-oncological disease makes this process particularly
powerful.

A Space Defined Disease

Brain cancer is an organ-defined non-systematic disease. Gliomas spread

spatially as ‘chunks’ of cells and are unlikely to colonise, or metastasise
throughout other parts of the body. Also, symptoms tend to correlate with
the surfaces of the brain affected by the disease. As discussed above, when,
for instance, sensomotors systems are affected, symptoms affect specific
body parts that point to the location of the tumour in the brain, to its
spreading, to the rate of its spreading, and to the spatial characteristics of
the spreading.
Case presentations are illuminating in this respect. Professional meetings
reveal two important processes: the first meshes the ‘case’ with the ‘patient’
and the second constructs the disease as the object of medical practice
(Anspach, 1988; Good, 1994). Although having long lost its grasp on the
patient, the information is exchanged in a way that is coherent with the
direct clinical encounter, based on concepts of space and visibility. When
110 SKY GROSS

speaking of a patient’s pathology, physicians often uses gestures that point

to the area of the brain involved rather than to the location of the
symptomatic revelation of the tumour. For instance, when Dr. Lise left
Simon’s room and discussed his condition with her colleagues, she naturally
placed her hand on the left side of her skull, rather than where the (very
visible) paralysis was (i.e., on the right side of the face). The patient’s
narrative was then transformed into ‘‘disease processes, localized spatially in
disease tissue lesions and disordered physiology’’ (Hardman, 2010, p. 38).
The patient was then represented as the site of this process, and the process
as a site within this site (ibid.).

Cancer and Metaphors

The overbearing presence of cancer in our lives, and the failing of medicine
to fully treat, cure, and control the disease gives it a particular position in
society where metaphorical language thrives (Reisfield & Wilson, 2004).
Looking specifically at medical metaphors, Van Rijn-van Tongeren (1997)
for instance, shows the functions they may be serving: they can both provide
a vocabulary to speak of disease (catachretic metaphors), explain to another
(didactic metaphors), and structure relatively unclear phenomena (theory-
constitutive metaphors). Metaphors alter the concepts, knowledge, beha-
viour and attitudes we have; they work to make graspable and effective that
which is not pre-given as such. This is achieved through the use of several
worlds of meaning, which have also been the interest of research. These
works and others have also analysed the use of metaphors in cancer in
relation to the worlds of meaning they refer to. Source metaphors of the
disease often involve war and battles (against the intruder, the tumour),
concepts of a journey (through the illness trajectory), or detective stories
(where diagnosis is sought) (Hodgkin, 1985; Reisfield & Wilson, 2004;
Sontag, 1978). Although readily seen in the field, these metaphors do not
feature prominently in this analysis. Instead, I focus on how patients and
those close to them regularly drew on metaphors of everyday objects (a
stone, a bubble) to describe cancer and its locus – the brain – thereby
distancing the self from the organ ‘gone wild’.

OBJECTIFICATION IN THE CLINIC

Through practices such as surgery, clinical examination, and history taking,

a lived, subjective, ‘‘presence in the flesh’’ can be transformed into a medical
A Stone in a Spaghetti Bowl 111

body (Young, 1997). Other components, however, may be central to the

spatialisation and objectification of self and disease.

Turning the Screen

In neuro-oncology, one of the most important methods of tracking the

disease is through the use of MRI and the comparison of tumour growth
and visible characteristics over the disease trajectory. This might explain
why so many consultations observed included a typical script where the
physician would load the MRI picture on the screen, observe it, and then
turn the screen towards the patient. The sharing of the ‘image’ of the disease
may be more than a didactic device. It seems to involve the exercise of what
Bourdieu calls ‘symbolic power’: ‘‘the power of constituting the given
through utterances, of making people see and believe, of confirming or
transforming the vision of the world’’ (Bourdieu, 1992, p. 170; see also
Bos, 2004). It induces a specific form of objectification on the part of the
patient – a ‘brain talk’ that would assert the biomedical object ‘placed on the
table’.
As will be claimed here, ‘brain talk’ was created through the conception of
the brain tumour in visible and spatial terms and resulted in a particular
kind of objectification of the organ of the self. Visual media (i.e., MRI,
computed tomography, angiographic studies) more often than not gave rise
to particular forms of interactions with patients when having exchanges with
me, and by the physicians (mostly during the radiology meetings). These
included metaphors that referred to a domain of mundane objects: a
meatball in a dish of spaghetti, a topping of olives over a pizza, the surface
of the moon, a stone, an egg, an animal, a dark cloud.

Mundane Language and Metaphors

As succinctly put by Lakoff and Johnson (1980, p. 5), ‘‘the essence of

metaphor is understanding and experiencing one kind of thing in terms of
another’’. The translation of the brain tumour as an abstract entity, not
directly observable by the sufferer, into a physical, visible mundane object is
a metaphorical process of creating and sustaining a conceptual – or even
ontological, radical constructivists would assert – world around a less
graspable reality. Metaphors in general involve concepts from the familiar
and concrete world to refer to more abstract and fuzzy realms of notions
112 SKY GROSS

and ideas. Whilst metaphors do not necessarily reintroduce subjective

meaning to disease, they provide other means of objectifying it in ways that
intuitively ‘make sense’.
The metaphorical transformation of the brain is exemplified in the case of
Lea, a 25-year-old woman, with advanced cancer. Her husband, Albert,
accompanied her along with her mother to the office of Dr Franz, a neuro-
oncologist. Lea sat on a wheelchair, completely lethargic, smiling emptily
when spoken to and dozing when not. Dr. Franz read the file according to
which Lea had just completed a round of radiotherapy. Yet, she appeared to
be in considerably worse health than the last time he saw her. Dr. Franz
looked at the MRI image and without uttering a word, turned the screen
towards Albert: ‘‘Look’’, he said. Albert remained unsure of what he was
supposed to ‘look’ at, but understood that something must be wrong. This is
when Dr. Franz solemnly announced:

The radiotherapy had no effect. In fact, the tumour has grown, and surgery is now
impossible: the tumour takes on half of the brain.

‘‘This’’, Dr. Franz pointed at the screen, now more clearly drawing
around the edges of the tumour, ‘‘explains how she is’’, as if the image
contained knowledge that was easily accessible even to the untrained eye.
In response, Albert asked, ‘‘Couldn’t you vacuum it out, like in a biopsy?’’
Dr. Franz bluntly answered, annoyed by the naı̈ve question: ‘‘This is not a
liquid! You would suck up all the brain out!!’’ Clearly, Albert’s
metaphorically mediated imaginary of the disease based on its image was
not one Dr. Franz expected or endorsed. One must note that Dr. Franz is
not exceptionally blunt when compared to other physicians’ attitudes in
clinical exchanges. This presentation reflects ordinary microsocial events in
this field.
Family members and close ones deal with many challenges. A central
concern is the fragmentary knowledge of their loved one’s experience and of
the medical aspects of the disease. They are often kept out by the patient
her/himself, while the medical staff tend not to be generous in providing
information – especially when asked for an evaluation of the patient’s life
expectancy. Conversations with family members show a trend, by which
formal facts and informed compassion toward their loved one, are
substituted by concrete representations. This process of objectification
provides both a representation and a narrative, a metaphorical story of a
disease (Dennett, 1992; Sontag, 1978). These redefine an ungraspable
A Stone in a Spaghetti Bowl 113

situation into something comprehensible through the actions of most

mundane objects:

What I remember about my father’s brain tumour is the surgeon telling me that his
surgery was like trying to remove a small stone from a bowl of spaghetti. (Jane, a student
in her twenties, daughter of Phil who is now at the terminal stage of brain cancer)

My son’s skull is like a closed box. I can just picture it: once the tumour gets big enough,
his head will explode. (Dina, mother of Sean, 25, under chemotherapy)

Brain cancer is thus very much referred to as an ‘it’ – a discrete thing rather
than as a process. The reference to an ‘it’ emphasises several characteristics
assigned to cancer: one can ‘get rid’ of ‘it’, and a removal of the ‘it’ is a sine qua
non to cure. One can thus draw a relatively solid line around the pathological,
and keep the ‘normal’ untouched (Cassells, 1976; Hodgkin, 1985).
The separation between the self and the disease takes form not only in the
use of metaphors, but also in the raising of common anecdotes. One patient,
Sahid, narrated his disease through focussing on his first seizure. It
happened while he was casually smoking a cigarette in his tent (Sahid is of
Bedouin origin). What he describes as a complete loss of control could have
easily led to the burning down his and his family’s home – the safety of
which he feels is his responsibility. The ‘thing’ took control by its very
unpredictability. Such a story is typical in that it portrays the disease as ‘‘an
object that has befell upon’’ the patient, rather than as a bodily process that
is enmeshed within his own notion of self. Another patient, Rona, was
playing with the children in her son’s kindergarten (‘‘I don’t know if the kids
thought I was playing a game’’); Shlomi was walking down the stairs at his
mother’s house (‘‘I’ve always hated those stairs’’); Nathan was brushing his
teeth (‘‘I felt my head was going to tear out of my body and fall into the
sink’’): none had any sense or experience of a process going on in their
brains. The seeming whimsicalness, the suddenness, the randomness of the
attack in familiar settings all contribute to the concept of an outside
intruder, completely out of synch with their ‘lifeworlds’.
Throughout the disease journey, the brain and its extension – the body –
take on a life of their own: where the brain is involved, the symptoms are
unpredictable and sporadic. More so, they are to a large extent beyond one’s
control. The brain ‘does what it does’, often at odds with one’s own wants,
expectations and choices. Under these circumstances, ‘self’ will no longer be
readily identified with this unruly organ, and as a result, the materialist
brain-self equation may be seriously challenged. This may channel patients
114 SKY GROSS

toward an adoption of a Cartesian notion of the self – a notion already

embedded within the biomedical setting they are forced to interact with.

The Brain Is Silent

Anthropological studies of pain and illness have contributed to our

understanding of the subjective, lived aspects of disease (see, for instance,
Good, 1994; Hardman, 2010; Scary, 1985; Schutz, 1970). These works
consider the ways in which suffering shatters the patient’s commonsense
experience of the world and demands a reconstruction of a meaningful
narrative to replace the objective-biological narrative. A person may
consider their body as taken-for-granted, leaving it outside of the scope of
awareness until disease strikes. It is only once an individual is subjected to
unpleasant sensations that this ‘silent’ and ‘recessive’ inner body can be
made ‘visible’. It is through what Leder (1990) calls ‘dys-appearance’ that
individuals come to experience themselves as embodied subjects (see also
Belling, 2010).
A brain tumour, however, does not cause ‘pain’ at the site of the
pathology: there, in the brain, silence remains. Furthermore, the presenta-
tions of brain pathologies seem often detached from the organ in itself, if
only considering their anatomical dispersion across the body. Indeed, the
popular view of the main and warning symptom of brain cancer is
headaches, when in fact any initial indication of cancer will almost
invariably come in the form of seizures or sensomotor disturbances –
neither of which obviously point to the brain as the locus of disease.
These non-perceptible things, according to conceptual metaphor theory,
need to be subject to metaphorical structuring (Goschler, 2005), creating
alienated objects within the boundaries of our own selves. Their belonging
to the ‘me’ will then be based on their being physically attached to sentient
parts of the body or to keeping the latter functioning. The brain in this
case becomes ‘asomatognosed’, in a way. Asomatognosia is a disorder
where a person’s limb seems to be an object glued onto one’s body, having
nothing to do with her/his ‘self’ (Greenberg, Aminoff, & Simon, 2002;
Tsementzis, 2000). In these cases, patients may go as far as calling this
limb by a name, such as ‘Joe’ or ‘Mary’ (Feinberg, 2006), where in our
case, the brain and the disease located within it will answer to
metaphorical references.
Thus, on the one hand, patients will not reject their own sense of ‘own-
ness’, of having a lifeworld (lebenswelt) as subjective agents but on the
A Stone in a Spaghetti Bowl 115

other, they may talk about their own interiors as being an ‘other’; an
object visible, observable and imaginable from a third-person standpoint –
one which draws its authority from biomedical epistemology and practice.

CONCLUSIONS
As is the case in any modern trade, the exchange demands one settled
currency, one particular language, may it be purely biomedical, materialist,
phenomenological – or some flexible blend. How, then, does this exchange
take place? The neuro-oncological encounter demands that brains and brain
tumours be placed in the space separating the physician and the patient, as
objects with specific properties, sets of metaphors and worlds of meaning.
The brain relates to the body in various ways; some are unpredictable,
others work utterly against intuitive logic. A lesion deep within an opaque
skull – only visible through alienating instruments – will not show its
presence at its original site: it would rather reveal itself through another
body part, and will be experienced by the patient as, say, a loss of feeling in
the toes. The brain, the site of endless nervous connections, is itself not
‘experienced’ by the patient. A toe will ‘hurt’, as will other internal organs –
kidneys will also ‘hurt’, for instance – yet the brain finds itself in a curious
position: being the site of subjectivity, yet not an experienced site. This
becomes evident in the findings of this research: the readiness of patients and
close-ones to adopt an objectified brain. Cartesian dualism will then enter
the picture, splitting brain and subjectivity. The self will cease to be
identified to this ‘unreliable’, ‘unreachable’, ‘unpredictable’ organ. The self
will become an abstract notion.
This chapter shows that doctors, patients and their close-ones all engage
in a form of translation where phenomena out-of-sight and out-of-reach
become communicative objects: objects with spatial coordinates (thus
‘imageable’ through high-tech instruments) and objects that belong to the
worldliest spheres of everyday living (thus ‘imaginable’ through lay
experience). The brain becomes a bowl of spaghetti.

REFERENCES
Ala, M. (2004). Negotiating pictures of numbers. Social Epistemology, 18, 199–214.
Anspach, R. R. (1988). Notes on the sociology of medical discourse: The language of case
presentation. Journal of Health and Social Behavior, 29, 357–375.
116 SKY GROSS

Arney, W. R., & Bergen, B. J. (1984). Medicine and the management of living. Chicago, IL:
Chicago University Press.
Bachelard, G. (1984[1934]). The new scientific spirit. Boston, MA: Beacon Press.
Barker, F. G. (1995). Phineas among the phrenologists: The American crowbar case
and nineteenth-century theories of cerebral localization. Journal of Neurosurgery, 82,
672–682.
Bastide, F. (1990). The iconography of scientific texts: Principles of analysis. In: M. E. Lynch &
S. Woolgar (Eds.), Representation in scientific practice (pp. 187–230). Cambridge, MA:
MIT Press.
Baudrillard, J. (1988). Simulacra and simulations. Selected writings. Stanford, CA: Stanford
University Press.
Belling, C. (2010). Narrating oncogenesis: The problem of telling when cancer begins. Narrative,
18, 229–247.
Bernal, J. D. (1929). The world, the flesh and the devil: An enquiry into the future of the three
enemies of the rational soul. New York, NY: Kegan, Paul, Trench, Trubner and Co.
Bjaalie, J. G. (2002). Localisation in the brain: New solutions emerging. Nature Neuroscience, 3,
322–325.
Bos, J. (2004). Everyday life objectivity. Social Epistemology, 18, 123–138.
Boumans, M. (2004). The reliability of an instrument. Social Epistemology, 18, 215–246.
Boumans, M., & Beaulieu, A. (2004). Foreword to ‘objects of objectivity’. Social Epistemology,
18, 105–108.
Bourdieu, P. (1977). Outline of a theory of practice. Cambridge: Cambridge University Press.
Bourdieu, P. (1992). Language and symbolic power. Cambridge: Polity Press.
Burri, R. V. (2008). Doing distinctions: Boundary work and symbolic capital in radiology.
Social Studies of Science, 38, 35–62.
Callon, M. (1986). Some elements of a sociology of translation: Domestification of the scallops
and the fishermen of St Brieuc Bay. In: J. Law (Ed.), Power, action and belief: A new
sociology of knowledge (pp. 196–233). London: Routledge and Kegan Paul.
Cartwright, L. (1995). Screening the body: Tracing medicine’s visual culture. Minneapolis, MN:
University of Minnesota Press.
Cassells, E. J. (1976). Disease as an ‘‘It’’. Social Science and Medicine, 10, 143–146.
Daston, L., & Galison, P. (1992). The image of objectivity. Representations, 40, 81–128.
Dennett, D. (1979). Brainstorm: Philosophical essays on mind and psychology. Hassocks:
Harvester Press.
Dennett, D. C. (1992). The self as the center of narrative gravity. In: F. Kessel, P. Cole &
D. Johnson (Eds.), Self and consciousness: Multiple perspectives (pp. 103–115). Hillsdale,
NJ: Erlbaum.
Dew, K. (2001). Modes of practice and models of science in medicine. Health, 5, 93–111.
Draper, J. (2002). ‘It was a real good show’: The ultrasound scan, fathers and the power of
visual knowledge. Sociology of Health and Illness, 24, 771–795.
Duden, B. (1993). Disembodying women: Perspectives on pregnancy and the unborn. Cambridge,
MA: Harvard University Press.
Dumit, J. (2004). Picturing personhood-brain scans and biomedical identity. Princeton, NJ:
Princeton University Press.
Eisenberg, L. (1977). Disease and illness: Distinctions between professional and popular ideas
of sickness. Culture Medicine and Psychiatry, 1, 9–23.
Feinberg, T. E. (2006). Our brains – our selves. Daedalus, 135, 72–80.
A Stone in a Spaghetti Bowl 117

Foucault, M. (1963). Naissance de la Clinique. Paris: Presses Universitaires de France.

Foucault, M. (1975). The birth of the clinic: An archaeology of medical perception. New York,
NY: Vintage Books.
Frank, A. W. (1992). Cyberpunk bodies and postmodern times. Studies in Symbolic Interaction,
13, 39–50.
Gall, F. G. (1808). Discours d’ouverture, lu par M. le Docteur Gall, à la première séance de son
cours public sur la physiologie du cerveau – le 15 janvier 1808. Paper presented at the
cours public sur la physiologie du cerveau.
Good, B. (1994). Medicine, rationality, and experience: An anthropological perspective.
Cambridge, UK: Cambridge University Press.
Goschler, J. (2005). Embodiment and body metaphors. Metaphorik, 9, 33–52.
Grant, C. (1968). New light on an old view. Journal of the History of Ideas, 29, 293–301.
Greenberg, D. A., Aminoff, M. J., & Simon, R. P. (2002). Clinical neurology (Fifth Ed.). San
Francisco, CA: McGraw-Hill/Appleton and Lange.
Gross, S. (2009). Experts and ‘knowledge that counts’: A study into the world of brain cancer
diagnosis. Social Science & Medicine, 69, 1819–1826.
Gunderman, R. B. (2005). The medical community’s changing vision of the patient: The
importance of radiology. Radiology, 234, 339–342.
Hacking, I. (1982). Language, truth and reason. In: M. Hollis & S. Lukes (Eds.), Rationality and
relativism (pp. 48–66). Oxford: Blackwell.
Hacking, I. (1992). ‘‘Style’’ for historians and philosophers. Studies in the History and
Philosophy of Science, 23, 1–20.
Hall, J. Y. (1977). Gall’s phrenology: A Romantic psychology. Studies in Romanticism, 16,
305–318.
Hardman, S. (2010). Chronic fatigue: An ethnography. Hardman Stuart Publisher.
Hodgkin, P. (1985). Medicine as war and other medical metaphors. British Medical Journal,
291, 1820–1821.
Jenks, C. (1995). The centrality of the eye in Western culture: An introduction. In: C. Jenks
(Ed.), Visual culture (pp. 1–25). London: Routledge.
Joyce, K. (2006). From numbers to pictures: The development of magnetic resonance imaging
and the visual turn in medicine. Science as Culture, 15, 1–22.
Joyce, K. (2008). Magnetic appeal: MRI and the myth of transparency. Ithaca, NY: Cornell
University Press.
Kaufman, S. R. (2000). In the shadow of ‘Death with Dignity’: Medical and cultural quandaries
of the vegetative state. American Anthropologist, 102, 69–83.
Knorr-Cetina, K., & Amann, K. (1990). Image dissection in natural scientific inquiry. Science,
Technology and Human Values, 15, 259–283.
Kolb, B., & Whishaw, I. Q. (2003). Fundamentals of human neuropsychology. New York, NY:
Worth Publishers.
Lakoff, G., & Johnson, M. (1980). Metaphors we live by. Chicago, IL: The University of
Chicago Press.
Lanigan, R. L. (1995a). Communicology. In: L. Embree (Ed.), The encyclopedia of
phenomenology (pp. 104–110). Norwell, NM: Kluwer Academic Publishers.
Lanigan, R. L. (1995b). Phenomenology. In: T. Enos (Ed.), The encyclopedia of rhetoric
(pp. 512–513). New York, NY: Garland Publishing.
Latour, B. (2005). Reassembling the social: An introduction to actor network theory. Oxford:
Oxford University Press.
118 SKY GROSS

Leder, D. (1990). The absent body. Chicago, IL: Chicago University Press.
Lock, M. (1997). Decentering the natural body: Making difference matter. Configurations, 5,
267–292.
Lock, M. (2002). Twice dead: Organ transplants and the reinvention of death. Berkeley, CA:
University of California Press.
Lynch, M. E. (1988). Sacrifice and the transformation of the animal body into a scientific object:
Laboratory culture and ritual practice in the neurosciences. Social Studies of Science, 18,
265–289.
Lynch, M. E., & Woolgar, S. (1990). Representation in scientific practice. Cambridge, MA: MIT
Press.
Macmillan, M. (1996). Phineas Gage’s contribution to brain surgery. Journal of the History of
the Neurosciences, 5, 56–77.
Martin, E. (1994). Flexible bodies. Boston, MA: Beacon.
Merleau-Ponty, M. (1962). Phenomenology of perception. New York, NY: Routledge.
Mishler, E. G., Amarasingham, L. R., Osherson, S. D., Houser, S. T., Waxler, N. E., & Liem, R.
(1981). Social contexts of health, illness, and patient care. Cambridge, UK: Cambridge
University Press.
Ohnuki-Tierny, E., Angrosino, M. V., Becker, K., Daar, A. S., Funabiki, T., & Lorber, M. I.
(1994). Brain death and organ transplantation: Cultural bases of medical anthropology.
Current Anthropology, 35, 233–244.
Pickersgill, M., Cunningham-Burley, S., & Martin, P. (2011). Constituting neurologic subjects:
Neuroscience, subjectivity, and the mundane significance of the brain. Subjectivity, 4,
346–365.
Popper, K. R., & Eccles, J. C. (1977). The self and its brain: An argument for interactionism.
Berlin: Springer.
Putnam, H. (1981). Reason, truth and history. New York, NY: Cambridge University Press.
Racine, E., Bar-Ilan, O., & Illes, J. (2005). fMRI in the public eye. Nature, 159–164.
Reisfield, G., & Wilson, G. (2004). Use of metaphor in the discourse of cancer. Journal of
Clinical Oncology, 22, 4024–4027.
Van Rijn-van Tongeren, G. (1997). Metaphors in medical texts. Amsterdam: Rodopi.
Rohrer, T. (2007). The body in space: Dimensions of embodiment. In: T. Ziemke, J. Zlatev &
R. Frank (Eds.), Body language and mind I: Embodiment (pp. 339–378). New York, NY:
de Gruiter.
Rosenberg, C. E. (1999). Meanings, policies, and medicine: On the bioethical enterprise and
history. Daedalus, 128, 27–46.
Sartre, J.-P. (1956). Being and nothingness. New York, NY: Philosophical Library.
Scambler, G., & Higgs, P. (1998). Modernity, medicine and health: Medical sociology towards
2000. New York, NY: Routledge.
Scary, E. (1985). The body in pain: The making and unmaking of the world. New York, NY:
Oxford University Press.
Scheper-Hughes, N., & Lock, M. (1987). The mindful body: A prolegomenon to future work in
medical anthropology. Medical Anthropology Quarterly, 1, 6–41.
Schutz, A. (1970). On phenomenology and social relations: Selected writings. Chicago, IL:
University of Chicago Press.
Sontag, S. (1978). Illness as metaphor and aids and its metaphors. New York, NY: Picador.
Synott, A. (1992). Tomb, temple, machine, and self: The social construction of the body. British
Journal of Sociology, 43, 79–110.
A Stone in a Spaghetti Bowl 119

Thompson, J. B. (1995). The media and modernity. Cambridge, MA: Polity Press.
Thornquist, E. (1997). Three voices in a Norwegian living room: An encounter from
physiotherapy practice. Medical Anthropology Quarterly, 11, 324–351.
Tsementzis, S. A. (2000). Differential diagnosis in neurology and neurosurgery. New York, NY:
Thoeme Stuttgart editions.
Vidal, F. (2009). Brainhood: Anthropological figure of modernity. History of the Human
Sciences, 22, 5–36.
Walters, T. (2004). Body worlds: Clinical detachment and anatomical awe. Sociology of Health
and Illness, 26, 464–488.
Webb, D. (1998). A ‘Revenge’ on modern times: Notes on traumatic brain injury. Sociology, 32,
541–555.
Young, K. (1997). Presence in the flesh. Cambridge, MA: Harvard University Press.
Youngner, S. J. (1989). ‘‘Brain Death’’ and organ retrieval: A cross-sectional survey of
knowledge and concepts among health professionals. Journal of the American Medical
Association, 261, 2205.
 PART II
HEALTH, ILLNESS AND
ENHANCEMENT
IS DEPRESSION A BRAIN
DISORDER? NEUROSCIENCE IN
MENTAL HEALTH CARE

Ilpo Helén

ABSTRACT

Depressive disorder has been defined by increasingly specific neurophy-

siological mechanisms and features during the past two decades. At the
same time, depression has grown into an epidemic proportion and become
a major public health problem. Consequently, the scope of depressive
experience and conduct has also widened and the meaning of depression
has multiplied and become equivocal. This chapter analyses how this
tension is handled in current Western mental health care. The focus of the
study is the role of neuroscientific views in mental health reasoning and
practice. The empirical case is the mental health discussion in Finland
from the late 1980s to the present day. The analysis of the historical
change in understandings of depression in Finnish psychiatry and mental
health care provides a view of the relevance of neuroscientific models in
defining depressive illness and outlining diagnostic and treatment
practices. Moreover, the analysis brings forth the relationship of
neuroscientific concepts to other ways of defining depression –
epidemiology, diagnostic classification, psychodynamic and other psy-
chological theories – within clinical reasoning. A conclusion to be drawn
from the analysis of the Finnish case is that neurobiological concepts of

Sociological Reflections on the Neurosciences

Advances in Medical Sociology, Volume 13, 123–152
Copyright r 2011 by Emerald Group Publishing Limited
All rights of reproduction in any form reserved
ISSN: 1057-6290/doi:10.1108/S1057-6290(2011)0000013010
123
124 ILPO HELÉN

depression have only limited influence on the ways in which the disorder is
conceived within the practical context of mental health care. It seems that
the idea of depression as a multi-factorial disorder remains a good enough
conceptual framework for clinical practice. Even the influence of
neurosciences on treatment is still somewhat marginal. Within current
practices of depression management, it is not the brain that is treated but
risks, symptoms, and persons.

Depression is a heterogeneous disorder with a highly variable course, an inconsistent

response to treatment, and no established mechanism.
–Belmaker & Agam, 2008, p. 55

The idea of depression as a brain disorder with specific biological features

has become predominant in professional and lay understandings in the West
during the past two decades. The rapid development in techniques of
molecular biology and brain imaging in the first years of the twenty-first
century has allowed neuroscientists, psychiatrists and psychopharmacolo-
gists to study and develop theories regarding specific neurochemical and
neurophysiological mechanisms and morphological features of the depres-
sive disorder. At the same time, depressive illness has grown into an
‘epidemic’ and become a major public health problem. The scope of
depression has extended so vastly that today a large variety of common
human responses to disappointment, loss, failure or despair at home, at
work or even at play are seen, diagnosed and treated as depressive disorders.
Consequently, the boundaries between depressive illnesses are blurred, and
normal sorrow and dejection have become indistinguishable from patholo-
gical depression (Helén, 2007b; Horwitz & Wakefield, 2007).
As depression has been defined by increasingly specific neurophysiological
mechanisms and features, the scope of depressive experience and conduct
has also widened and the meaning of depression has multiplied and become
equivocal. In this chapter, I study how this tension is handled in current
Western mental health care. I particularly focus on the role of neuroscien-
tific views in mental health reasoning: How significant are neuroscientific
models of depression in defining the illness and outlining diagnostic and
treatment practices? What is the relationship of neuroscientific concepts of
depression to other ways of defining the condition – epidemiology,
diagnostic classification, psychodynamic and other psychological theories –
within clinical reasoning?
The subject of my analysis is a particular kind of psychiatric discourse.
Treatment of depressive disorders mainly falls within the domain of primary
health care and is thus carried out by GPs; in this context, depression
Neuroscience in Mental Health Care 125

management procedures are highly standardised and rather homogenous

all over the Western world (Callahan & Berrios, 2005; Helén, 2007a). The
focus of my study is a psychiatric discourse that facilitates the homogeniza-
tion of depression treatment by giving guidance and setting standards to
diagnostic and therapeutic practices in primary health care and for
professionals with limited psychiatric expertise. I analyse a particular kind
of psychiatric discourse on depression: an ‘applied’ one that creates a
framework of thought through which depression becomes conceivable and
its treatment gains a reasonable basis in current mental health care. The
latter does not primarily refer to institutions and practices of specialised
psychiatric care but to numerous contexts and institutions of health
care, social services and education in which mental problems are
encountered today (Helén, 2007b). What characterises this psychiatric
discourse is the attempt of the participants, mostly psychiatrists, to present
‘solid and reasonable’ views of depressive illness which seek wide
professional acceptance and can be generally applied in medical treatment
of depression.
My (mainly Finnish) data consists of compilation books and ‘compen-
diums’ about depression targeted at health care professionals; scientific
papers; and professional consensus statements and official treatment
guidelines from the mid-1990s onwards. I focus in this chapter on Finland
in order to present a coherent view of the position of neuroscientific
reasoning in mental health care in one specific and under-studied context.

DEPRESSION AS AN EXAMPLE

Why do I take depression to exemplify the way neuroscience has come

ashore in mental health care? Obviously, if my analysis focused on
schizophrenia, ADHD or dementia, the neurosciences would probably
appear in a different role. Therefore, my analysis of the position of
neuroscientific reasoning in the current depression management assemblage
should not be overly generalised. However, the formation of depression as a
‘brain disorder’ provides a good case for reflection on how cutting edge
biomedicine is implemented, adopted and modified in clinical reasoning
embedded in practical settings. First, depression is nowadays considered the
most common mental disorder in countries all over the world (Mathers &
Loncar, 2006; WHO, 2009). The emergence of depression as a major public
health problem has occurred in parallel with changes in the psychiatric
institution and psychological care, and with a metamorphosis in the
understanding of mental illness and psychic problems. During the past
126 ILPO HELÉN

century and a half, psychiatry has expanded its terrain beyond the asylum
walls, multiplied and disseminated everywhere in society, forming a wide
mosaic of mental hygiene and psychotherapies (Castel, Castel, & Lovell,
1982; Horwitz, 2002; Rose, 2006). Across the Western world, the control,
management and care of mental illness and psychological well-being have
fused together epistemically, practically and even institutionally and form a
continuum of mental health care. The development accelerated after the
Second World War and, at the same time, the forms of treatment of mental
disorders – from psychotherapies to psychopharmaceuticals – became more
sophisticated (Helén, 2007b; Rose, 2006). During the past three decades,
depression has been the most important anchorage in the rhizome of mental
health care and acquired a paradigmatic position in Western mental health
thinking and practice. In this context, depression epitomises how mental
disorders or disturbances of psychological well-being are understood by
both professionals and the lay public, and it provides a name and form to a
common mental health problem (Callahan & Berrios, 2005; Helén, 2007a;
Horwitz & Wakefield, 2007).
There is also a close interconnection between the development of the
current concept of depression and the emergence of neuroscience. When
psychopharmacology made a breakthrough as a science and began to impact
significantly on psychiatry in the mid-1950s, depressive illness played a
significant role in this development (Healy, 2002). Depression became re-
conceptualized as a distinct brain disease, and a new rationale emerged to
provide empirical evidence for this idea (Healy, 1997; Helén, 2011). Two lines
of research in psychopharmacology were connected to this. On the one hand,
attempts to define and classify mental diseases on the basis of drug
cartography were intensified (Radden, 2003). In the 1950s and 1960s,
psychopharmacologists were occupied with drug cartography, when they
tried to define depressive disease on the basis of drug effects. At that time,
several studies were carried out that defined subtypes of affective disorders
on the basis of drug response, and many scholars firmly believed that the
nosography of mental disorders could soon be anchored in neurophysiology
and neurochemisty (e.g. Overall, Hollister, Johnson, & Pennington, 1966;
Schildkraut et al., 1978). On the other hand, the emphasis on neurochemistry
increased in psychopharmacology and neuropsychiatry, and receptor and
neurotransmitter activity became the main point of interest. In this context,
clinical drug effect evidence provided the basis for theories of neurochemical
malfunctions, especially abnormal metabolism of neurotransmitters in the
brain, as causes of major mental illnesses. Among those theories was the
monoamine hypothesis of depression; first formulated in the late 1960s, this
Neuroscience in Mental Health Care 127

notion was to have an major influence throughout Western mental health

care lasting into the twenty-first century (Healy, 1997).
Interconnection of a concept of depression and psychopharmacology
illustrates a central characteristic of the psychiatric discourse embedded in
mental health care. Reasoning over depression is based on the therapeutic
ethos in the context of mental health, and that ethos reflects a more general
conviction in much of Western culture today that something can and should
be done about persistent sadness, low spirits or feelings of nothingness.
Consequently, the treatment imperative determines how depression is
conceived of and defined; i.e. what depression is considered to be, both by
professional and lay publics. In mental health care, the ontology of
depression is practical because what is is not detachable from what is done
(cf. Mol, 2002).
Finally, depressive disorders are challenging for neuropsychiatry because
they do not fit with the neuroscientific view of mental illness in a simple
manner, despite the historical connection between depression and psycho-
pharmacology. Especially in clinical and wider mental health contexts, the
idea that depressive disorders are caused by joint influence of biological,
social and psychological factors is pivotal, and it has not been eclipsed by
the neurobiological concepts that dominate the research (cf. Pickersgill,
2010). Moreover, it seems that even the neuroscientific approach to
depression embraces the notion of ‘multi-factoriality’. As Eero Castrén, a
Finnish neuroscientist, writes: ‘‘Depression is a polymorphous and multi-
factorial illness, and it is quite unlikely that its pathogenesis could be
explained by a single model’’ (Castrén, 2009, p. 1785).
Thus, my analysis of the concept of depression in current mental health
care provides a view on the role and meanings of ‘biology’ and ‘the brain’ in
a practice embedded ontology of mental illness. It also demonstrates that
neurobiology is not a unity in this context but, rather, biological and
neuroscientific entities, features and processes are conceived of in multiple
and flexible ways when mental health professionals discuss depression as a
brain disorder.

FINNISH CASE
Material studied for this chapter include articles and research reports on
clinical aspects, epidemiology, and treatment of depressive illness in Finnish
medical journals (Duodecim and Suomen Lääkärilehti), textbooks, and
official guidelines for diagnosis and treatment of depression and for the use
128 ILPO HELÉN

of antidepressants. Articles published in international psychiatric or medical

journals by Finnish doctors are also included in the data. Additionally, I
have analysed similar material from abroad, especially the authorised
guidelines for depression management in Britain and the USA.
There are some key texts. The Academy of Finland consensus report
(SA, 1995) and a special issue of Duodecim (1994) embody the mainstream
discussion of mental health professionals in the period of consolidation of
the depression treatment standard. The making of the professional
consensus in the early 1990s was influenced by handbooks for mental
health care practitioners which compiled writings on the epidemiology,
aetiology, diagnostics, treatment and social aspects of depression
(e.g. Achté & Tamminen, 1987, 1993; Salokangas, 1997; Tamminen,
2001). Out of this literature, Salokangas’s and Tamminen’s books are
important since they represent the late 1990s and early 2000s tendency to
adopt views from the neurosciences within a psychotherapeutic framework.
Finally, the 2009 special issue of Duodecim and some papers from the 2000s
(Leppänen, 2007; Karlsson, Melartin, & Karlsson, 2007) are important
because a certain concept of the neurobiology of depression is given a
major role.
In Finnish mental health care, a public health orientation predominates.
Professional care for mental problems is mainly provided as a public social
and health service in municipal health care centres and psychiatric
outpatient clinics, and the services are – in principle – available to all.
Compared to the USA commercially oriented health care and the mental
health and self-enhancement markets – characterised by innumerable
varieties of therapies and treatments and by social and professional
segmentation – are very marginal in Finland. Consequently, US-style
mental health consumerism (see Hale, 1995; Metzl, 2003) was non-existent
in Finland until the mid-1990, and today remains very moderate.
Accordingly, public health authorities’ and mental health experts’ authority
to define mental health problems, implement treatment for them, and make
policy, has remained unchallenged. Furthermore, privatised psychotherapy
and counselling has not had the centrality within mental health care in
Finland as it has in the USA, and it has been integrated into public mental
health care through the public health insurance system. Likewise, psycho-
analytic ideas and methods did not have the same exceptionally widespread
popular and professional appeal in Finland that they had in the USA from
the late 1940s to the 1960s. Thus, the fierce offensives fought in the USA
between advocates of psychoanalysis and ‘biological psychiatry’ were not
seen in Finland.
Neuroscience in Mental Health Care 129

The shift in the management of mental health problems – characterised by

a reduction in hospitalisation and a growing emphasis on outpatient care,
community psychiatry, and prevention, and an increasing blending of
mental health care into many branches of medicine and social work that
other scholars have noted for the USA, the UK and other Nordic countries
(Castel et al., 1982; Grob, 1991; Shorter, 1997) – took place later in Finland,
in the mid-1980s. Then the rapid change of orientation towards outpatient
care – with the goal of supporting patients’ autonomy and community
integration – took place throughout the mental health care system. The
number of beds in psychiatric hospitals was reduced accordingly.
Dehospitalisation of many patients suffering from severe depression was a
significant outcome of this development. However, the rationale to treat the
majority of patients with mental disorders in primary health care was more
remarkable and widespread in its effect. It re-iterated the opinion that
municipal health care centres and other institutions of primary health care
should have a key role as agents of prevention and providers of treatment
for common mental health disorders. This policy was promoted by
advocates of social psychiatry and by psychiatric epidemiologists in Finland
since the mid-1970s, and it was triumphant in the re-organisation of Finnish
mental health care in the 1980s. In parallel, depressive illness became the
focus of the new arrangement (Helén, Hämäläinen & Metteri, forthcoming).

Finnish depression

Depression emerged as a focus of the mental health discussion at the turn of

the 1990s. It was seen as problematic in a manner familiar from the
international discussion. For a start, depressive symptoms and disorders
were considered to be very common in the population, and they thus were
felt to constitute a genuine public health problem. The Academy of Finland
consensus report stated that 6% of the Finnish population suffered from
clinically significant depression (SA, 1995, p. 5); it was a considered a fact
that ‘‘almost everybody will fall ill with a minor depressive episode during
his or her life and that one out of four will suffer from major depression’’
(Tamminen, 2001, p. 52). Moreover, Finnish mental health experts were
almost unanimous in their assessment that depressive symptoms and
disorders were under-diagnosed and inadequately treated. The key problem
was ‘recognition’ of depression, accompanied by questions about the proper
treatment of depressive disorders and, especially, the role of antidepressant
medication (Helén, 2007a).
130 ILPO HELÉN

The notion of depression as a public health problem, embedded in the

epidemiology of depression, was particularly significant in the Finnish
discussion. The latter gained specific importance when used to help
understand the exceptionally high rate of suicide mortality in Finland. In
the mid-1980s, a large-scale national research and development project for
suicide prevention was launched in Finland under the direction of the
National Public Health Institute; this was the most important preventive
mental health care project in Finland at that time. Research in this project
confirmed the results of a number of previous studies in other Western
countries showing that acute depression was the most important ‘risk factor’
for suicide (e.g. Lönnqvist, 1988; Isometsä et al., 1994). This fact provided a
justification for efforts to improve the treatment and prevention of
depressive disorders. Concerns about depression thus became the focus of
the Finnish mental health policy.
Additionally, the intensification of interest in depressive disorders by
Finnish mental health professionals and health authorities coincided with
the introduction of the SSRI antidepressants. The Finnish health
authorities approved fluoxetine (Fontex) in 1988 and citalopram (Cipramil)
in 1989 as medication for depressive disorders. Since then, the number of
psychotropic drugs users has increased considerably, and well over one
million Finns were prescribed psychopharmaceuticals in 2009. This
development is almost entirely due to the increase in consumption of the
new Prozac-type drugs, as consumption of antidepressants tripled during
the 1990s. Today, the SSRIs are the most-used psychopharmaceutical
medication in Finland with over 400,000 users annually (Finnish Statistics
on Medicines, 1988–2009).
Such an increase obviously raised discussion in Finnish professional
circles but the dispute was minimal compared to debates in the USA or
Britain. One issue that raised different opinions in international psychiatry
was the use of drug treatment for mild depressive disorders and for patients
with depressive symptoms. In Finland, this problem was greatly over-
shadowed by worry about overall ‘undertreatment’ of depressive illness and
about inadequate skills of GPs in treating depressed patients. Among the
shortcomings of the health centre physicians was poor management of
antidepressant treatment. Studies from the late 1980s and early 1990s
showed that Finnish GPs were too cautious in prescribing antidepressants
and concluded that ‘‘emphasis should be placed on the use of antidepres-
sants’’ (Poutanen, 1996, p. 125) in efforts to improve treatment. By the mid-
1990s, the situation had changed: physicians became more inclined to
prescribe antidepressants, and drug consumption multiplied.
Neuroscience in Mental Health Care 131

In the Finnish professional discussion, this increase was generally

regarded as a welcome indication of improvements in diagnostic practices
for and in the treatment of depression in primary health care. However, a
new problem was acknowledged by many mental health experts:
A danger in the current situation is that the treatment of patients suffering from
depression will be reduced to the routine medication and social assistance. Instead, the
object of treatment should be the patient as a person, as a whole human being.
(Tamminen, 1995, p. 3)

CLINICAL BRICOLAGE
The mode of discussion on depression is strikingly unified in compilations,
textbooks, special issues of medical journals, and, to some extent, in
authorised guidelines. The latter resemble psychiatric textbooks in
their format: there is a section devoted to the epidemiology of depression,
a specific section for theories and aetiology, a section for symptoms,
clinical classification of depressive disorders and diagnostics, and a
section for therapeutics. Since the purpose of these guidelines is to serve
mental health care practices it is not surprising that the latter two
sections – classification, diagnosis and treatment of depression – are
emphasised.
In the section for theories and aetiology of depression, practically all
Finnish compilations, textbooks and journal special issues present several
theoretical approaches to causes and pathological processes of depression.
One or two articles are devoted to an overview of the biology of depression,
and followed by writings on psychological models. Here, theories like
Seligman’s notion of learned helplessness and the view of depressive illness
as a cluster of distorted cognition of the self and the world are presented.
Moreover, psychodynamic and psychoanalytic views of depression are
advanced in theory sections. Social ‘factors’ like loss of a loved one, troubles
in human relations, experiences of failure and stressful life events
contributing the onset of illness are pointed out, usually in the context of
psychodynamic models and psychotherapies.
A noteworthy feature of the discourse is that different theoretical
approaches and explanatory models are presented side-by-side, and
hardly any attempt to juxtapose the theories with each other or make a
synthetic explanatory model of them is made by single authors or editors of
the books or journals (cf. Pickersgill, 2010). The idea of depression as a
multi-factorial disorder, caused jointly by biological, psychological and
132 ILPO HELÉN

social factors (see Pilgrim, 2002), is the primary and rather loose
framework for theoretical understanding of depression in the mental
health context (e.g. Salokangas, 1997, pp. 22–29; Tamminen, 2001,
pp. 55–79).
Theories and views on the aetiology of depressive illness are presented as
if separate from clinical knowledge and reasoning in mental health
discourse. The implications for clinical practice of a particular view of
pathogenesis are rarely explicated, and the rationale of diagnosis and
treatment remains similar regardless of what is thought of the causal process
or onset mechanism of the disorder. A pivotal tenet in mental health
reasoning seems to be the following: because depression is a complex
disorder with multiple causes, knowledge of causes and pathological
mechanism provided by theories and empirical research is not necessarily
required in making a diagnosis, or caring for and curing a depressed patient.
Thus, a clinician does not need to commit to one theoretical model of
depression and disregard others.
Both theoretical pluralism and an emphasis on clinical knowledge over
explanatory medical and psychiatric models are persistent features of mental
health discourse on depression during the whole studied period, and they are
salient in different national discourses as well. Such a pragmatic approach is
by no means unusual in medicine and psychiatry, but it should be noted that
the aforementioned features of depression discourse reflect the current
theoretical and therapeutic eclecticism of mental health care, brought about
by its expansion during the last quarter of the twentieth century (Castel
et al., 1982; Engel, 2008). Furthermore, a tendency to lay aetiology and
causal explanations of depressive disorders aside reflects the nosographic
approach to mental illness that has acquired global hegemony in mental
health care after the introduction of the DSM-III classificatory manual in
1980. In so-called neo-Kraepelinian psychiatry (after the notable nineteenth
century psychiatrist Emil Kraepelin), mental disorders are conceived of as
unambiguously defined by groups of symptoms, purified of metapsycholo-
gical or aetiological concepts and elements. Also the context of the
symptoms – life situation or life history of the patient – is considered
secondary for the clinical concept of depression (Horwitz & Wakefield,
2007). The way depression treatment is presented in the Finnish mental
health discourse is congruent with this approach: the depressive symptoms
are at the focus of diagnosis and therapy, not the basic processes –
biological, psychological and/or social – that give rise to those symptoms
(Helén, 2007a).
Neuroscience in Mental Health Care 133

ELEMENTS OF BIOLOGY

Since explanatory models and theories of depression are considered

secondary, neurosciences are apparently painted in the corner of mental
health discourse. As we will see, mental health reasoning is assembled in such
a manner that whatever the neurosciences say and reveal about neurobiology
of depression seems to have marginal impact on clinical and therapeutic
rationales (cf. Pickersgill, 2011). The corners in which the neurosciences
appeared from the mid-1990s onwards are the sections of textbooks and
special issues where the ‘biology’ of depression is discussed. The apparent
function of these sections is to present findings of current research, and the
tone of discussion is very cautious. Major conclusions about the essence of
depression are not drawn from research on genetics and neurobiology.
Neurobiology was given a rather marginal role in a 1995 Academy of
Finland consensus report and in a 1994 special issue of Duodecim – both
milestones in the Finnish discussion of depression. As for the biology of
depression, the focus is genetics; specifically, the older version of psychiatric
genetics, not molecular genetics. In the former, the biological heritability of
depression is discussed in the light of family, twin and adoption studies,
although ‘promising’ findings of research in molecular genetics of gene
defects connected to mood disorders are presented to readers. On the basis
of the old research tradition in genetics, the Finnish authors state that there
is inarguably a genetic component in mood disorders, notably more
significant in bipolar disorders and in severe and chronic depression than in
milder conditions (e.g. Bredbacka, 1994; Huttunen, 1995; Tienari, 1993).
In this context, the core idea is ‘vulnerability’: the ‘genetic component’ is
actualised so that it makes certain individuals more prone than others to fall
ill with depression in certain situations, and this difference cannot be
reduced to social factors or factors related to personal experience, because
the mentioned studies show clearly the contribution of biologically inherited
traits to the likelihood of the onset of depression (e.g. Tienari, 1993;
Huttunen, 1995). This view was congruent with the epidemiological ap-
proach to depression that increasingly began to focus on risks of depression
at that time (Helén, 2007b), and it preceded the discussion on genetic risk or
susceptibility to depression that became more predominant in Anglo-Saxon
debates (Rose, 2007) and also to some extent in Finland toward the end of
the century.
The Finnish psychiatrists, even those inclined to neuropsychiatry, were
hesitant to promote genetics of depression in mental health discussion. Time
134 ILPO HELÉN

and again, the conclusion of papers on the biology of depression was that
the weight genetic or other biological factors and mechanisms of biological
inheritance exerted in the onset of depressive disorder remained unknown,
and much research was still required to specify the biological aspect of this
mental illness. The cautious tone reflects the ambivalent attitude towards
biological approaches to depression or mental illness in general. On the one
hand, genetic or other biological explanations of depression provided by
neuropsychiatric research were not deemed specific enough for clinical
purposes and also too reductionist for the multi-factorial model of
depression. On the other hand, the view that biological causes and
mechanisms are elementary for depression and other mood disorders and
that research in genetics, neurobiology and neuropsychiatry will reveal
and explain them in the future is repeated in the key texts of mental health
discourse in the mid-1990s (e.g. Bredbacka, 1994; Huttunen, 1995; Tienari,
1993).
The same ambivalence can be seen in the mid-1990s mental health
discussion on the neurobiology of depression. Neuroscientific (mainly
neurophysiological and psychopharmacological) research findings were seen
to indicate ‘biological factors’ of depression and a quite fragmented view of
them was presented to the audience of Finnish mental health professionals.
Attention was paid principally to two phenomena. First, findings about
abnormal neurotransmitter metabolism and receptor activity associated
with depressive disorder were presented and the relationship of abnormal
neurochemistry to the both onset of and vulnerability to depression were
discussed (e.g. Huttunen, 1995; Syvälahti, 1994; Linnoila & Virkkunen,
1992; Virkkunen & Linnoila, 1990). The second main theme was the role of
neuroendocrinology in depressive disorders. Studies of regulation malfunc-
tions of the endocrine system associated with severe depression were
presented (e.g. Huttunen, 1995; Salokangas, 1997; Syvälahti, 1993). These
themes were also the focus of the neurobiological discourse on depression in
Anglo-Saxon psychiatry at that time. However, there was hardly any voice
in Finnish psychiatry or mental health care more broadly that would have
advocated some neurobiological factor as the explanation of depression.
Rather, neuroscience was faced with a mixture of reservations and
expectations by Finnish mental health experts. On the one hand

extensive biological research on depression have lasted for many years and so far it has
not been able to demonstrate what the specific biological processes behind the depressive
states and susceptibility to depression are. (Huttunen, 1995, p. 73)
Neuroscience in Mental Health Care 135

Yet, on the other hand

new sensitive methods of biochemistry and neurophysiology, imaging devices, and

techniques of molecular biology enable us to study the biological factors behind
depression in a more detailed and more comprehensive manner. (Syvälahti, 1994, p. 266)

The marginal position of neuroscience in the Finnish professional

discussion on depression in the mid-1990s is shown even more clearly when
compared to psychodynamic reasoning. In textbooks for mental health
professionals, journal special issues and the Academy of Finland consensus
report there are several papers approaching depressive illness from a
psychodynamic perspective while findings of neurosciences were presented
only in one or two papers (e.g. Achté & Tamminen, 1993; Duodecim, 1994;
SA, 1995). Presumably, Finnish mental health experts considered psycho-
dynamic reasoning on depression to be more closely connected with the care
and cure of depressive patients and thus bared more direct relevance to
therapeutic practice than studies in neurobiology, and therefore this
emphasis prevailed in the discourse. In a fashion of contemporary
psychiatry, eclecticism characterised the psychodynamic discussion on
depression, i.e. elements and ideas from different schools of psychoanalysis
and psychotherapy were adopted and mixed for explanation and
interpretation of depressive experience (cf. Pickersgill, 2011).
In the mid-1990s, when the standard of depression was started to be
implemented in the Finnish health care system and the professional
consensus was established, the approach of Finnish mental health experts
emphasised epidemiological and clinical reasoning and considered aetiolo-
gical and theoretical problematisations of mood disorders secondary. Two
cornerstones for a general framework for psychiatric and medical under-
standings of depressive illness emerged out in the Finnish mental health
discussion. First, the Finnish discourse underlined the psychotherapeutic
and psychodynamic approaches for understanding depression, which
ultimately defined it as an existential condition. The discussion by Raimo
Salokangas, a professor of psychiatry, in his book Kliininen depressio (1997)
exemplifies this tendency. Despite his strong emphasis on neuropsychiatry
(see Helén, 2007a), Salokangas considered the treatment of depression a
psychotherapeutic process, as did most of his Finnish colleagues. He
asserted that depression was basically an experience of loneliness, and
patients’ profound feelings of insecurity were both the major characteristics
of the disorder and the main cause of their subjective isolation. Salokangas
underlined that all treatment for depression, medication included,
136 ILPO HELÉN

essentially reconstituted the ‘basic’ security of the patient, in terms of her or

his relation to the world, to others, and to her or himself.
Another cornerstone in the Finnish discussion in the mid-1990s was the
idea that depression is also a biological condition, although it could not be
specified what was biological in the experiences and behavior of the
depressed person. The Finnish experts focused more on studies demonstrat-
ing the genetic character of depression, while discussion on neurobiology
was more fragmented.
In sum, the theoretical concept of depression, considered secondary as
compared to the clinical concept, was based on the intertwining of
a psychodynamic perspective and a view of depression as an essentially
non-cerebral biological phenomenon. In Finland, the concept of depression
as a distinct brain disorder occupied comparatively little room in this
assemblage of reasoning, or so it seems.

DRUG TRAIL

With the consolidation of depression treatment standard in the late 1980s,

medication became the focus of the therapeutic rationale in psychiatric care
and primary health care, in Finland as elsewhere (Healy, 1997; Helén,
2007a). The core position of antidepressant drugs formed a template for the
neurosciences, especially psychopharmacology, to influence the central ideas
of clinical reasoning in wider mental health care contexts. But to what extent
did the concept of depression as a brain disorder, or chemical imbalance in
the brain, actually change clinical reasoning?
Already in the 1970s and 1980s, antidepressant medication had become a
routine treatment for severe depressive patients in psychiatric hospitals or
outpatient clinics everywhere in the West. The practice originated in the late
1950s and early 1960s, when psychopharmacologists developed tricyclic
antidepressants (imipramine, amitriptyline and clomipramine) and studied
neurotransmitter metabolism in the brain. Consolidation of the treatment of
severely depressed patients by tricyclic antidepressants was part of a broader
series of drug innovations between the 1950s and 1980s (Healy, 1997, 2002).
Finnish psychiatrists were very familiar with the treatment procedure and
the rationale developed with the tricyclic antidepressants in specialised
psychiatric care. This model was applied to all treatment sites, when the
treatment standard was established in Finland in the early 1990s (Achté,
1999; Isometsä, 1999). Thus, the introduction of the selective serotonin
reuptake inhibitors (SSRIs; e.g. citalopram, fluoxetine and paroxetine) in
Neuroscience in Mental Health Care 137

the late 1980s and early 1990s did not create a completely new rationale of
drug treatment for depression, but rather widened the scope of medication
in primary care, as the new antidepressants were considered ‘‘easy-to-use’’
(Healy, 2004; Rose, 2004). Accordingly, Finland was not in any way
exceptional when compared to the making of depression management
procedures in Western Europe and North America (Helén, 2007a, 2007b).
The primary role of antidepressant medication in depression treatment was
discussed and justified almost entirely in clinical terms in the Finnish
professional mental health care discourse. During the whole period under
study, the approach to antidepressant medication has been purely clinical in
the authorized guidelines in Finland, as well as in other countries (e.g.
Depression in primary care, 1993a, 1993b; NICE, 2004, 2007, 2009; Paykel &
Priest, 1992), and the drugs were discussed only in the clinical context
throughout the Finnish depression discourse in the early 1990s. Theories of
psychopharmacology and conceptualisations of depression as a dysfunction
of neurochemistry and neurophysiology were marginal, indeed almost
absent, in the clinical rationale. For clinicians, research evidence showing
that antidepressant medication reduced patients’ symptoms and prevented
recurrence of disorder justified drug treatment as the primary therapeutic
option, especially for severe depression. Furthermore, Finnish experts
presented a range of antidepressants to their readers, including the SSRIs
as a subgroup of drugs, and discussed the selection of the drug, dosage,
treatment procedure, adversary effects and other clinical technicalities. The
fact that psychopharmaceuticals made depressive disorders treatable in a safe
and relatively easy way was the focus of the discussion; the chemical and
physiological mechanisms causing the effect were secondary (e.g. Depressio:
Käypä hoito, 2004; Käypä hoito: Depressio, 2009; Lehtinen, 1994; Spoov &
Syvälahti, 1996; Tamminen & Achté, 1994.)
Despite the domination of clinical reasoning in the discourse on
psychotropic medication, new elements emerged in the Finnish mental health
discussion on antidepressant medication. Some papers in medical journals in
the late 1980s and early 1990s discussed the neurochemical and physiological
mechanisms behind the drug effect on depressive symptoms – neurotransmit-
ters, receptors, reuptake, pre- and post-synaptic metabolic activity, and so on
(e.g. Mattila & Mattila, 1991; Syvälahti, 1986). As the twentieth century closed,
such discussion became more common in some mental health textbooks; a
framework to understand drug treatment and depressive illness started to
emerge in Finland (e.g. Isometsä, 1999; Salokangas, 1997; Tamminen, 2001).
As discussed earlier, that framework originated from pharmacological
research on drugs that were observed to alleviate the symptoms and elevate
138 ILPO HELÉN

the mood of severely depressed patients. In the late 1960s and in the early
1970s, this line of psychopharmacological research was consolidated in the
monoamine hypothesis of depression which claimed that:
drugs with antidepressant activity were shown to increase extracellular concentrations of
two important monoamine neurotransmitters – serotonin and noradrenalin – by
inhibiting the catabolism or reuptake to nerve endings. These findings were the basis for
the monoamine hypothesis of depression, which proposes that mood disorders are
caused by a deficiency in serotonin or noradrenalin at functionally important receptor
sites in the brain. (Castrén, 2005, p. 241)

This chemical view of depression dominated the understanding of the

biology of mood disorders until the beginning of the 2000s, and research
and mental health discussion in the West focused mainly on serotonin since
the late 1970s (Healy, 1997).
Yet, Finnish experts were rather cautious in adopting the serotonin model
of depression. On the one hand, it was repeatedly claimed that empirical
research did not give strong support to the theory, or that results from
empirical studies were contradictory. On the other hand, Finnish authors
interested in the monoamine theory tended to frame it in a holistic way,
presenting serotonin metabolism as a part of complex neural system. The
way Salokangas approached the issue in his textbook Kliininen depressio
(1997) exemplifies much of the Finnish discussion at the end of the 1990s
and in early 2000s. He thought of depressive disorders as malfunctions of a
system composed of two interconnected sub-systems: the neurophysiological
and the mental. He avowed that integration of the two and mechanisms of
influence between them remained to be explained and specified, paving the
way for future research. Salokangas emphasised the system perspective also
in his concept of neurobiology of depression. For him, depression was:
an extensive neurophysiological disorder, as a consequence of which the functions of the
neural pathways regulating feelings of pleasure, mental agility, feelings of anxiety, and
the cognitive and vegetative processes are off the track. (Salokangas, 1997, p. 25)

Consequently, Salokangas and many other Finnish psychiatrists thought

that serotonin metabolism was a function of the brain system and that drugs
‘inhibiting’ serotonin reuptake may spread their effects across the whole
system. Within this frame of thought, the mood of the Finnish discourse
toward the ‘serotonin deficit’ view of depression was quite reserved.
At the end of the 1990s and early 2000s more papers introducing new
generation antidepressants were published in Finnish medical journals
and SSRI and other new drugs were also presented in professional advice
books on psychopharmaceuticals (e.g. Kähkönen & Partonen, 1999;
Neuroscience in Mental Health Care 139

Poutanen & Vuorinen, 1996; Spoov & Syvälahti, 1996). The clinical aspects
of these drugs obviously dominated the discourse, but the chemical and
physiological mechanisms by which the drugs affected the depressed brain
and person were also brought forward. Since the SSRIs were the central topic,
much of discussion was devoted to presenting and explaining serotonin
activity at the nerve endings and the effect of drugs on that. However, the
Finnish experts were quite moderate in their discussion: they repeated that
research evidence on the relationship between serotonin deficit and depressive
disorders was contradictory, and attempted to put the question of normality
of serotonin levels in the brain into a general context of neurophysiology.
Information on the neurochemistry concept of depression was also
produced and distributed by the pharmaceutical industry. In the 1990s,
manufacturers of SSRIs launched massive campaigns all over the world to
inform mental health experts and general practitioners about depression as a
public health problem and about the new generation antidepressants
(Applbaum, 2006; Healy, 2004; Rose, 2004). Finland was no exception: after
the approval of citalopram and fluoxetine as prescription drugs for
depression in the late 1980s, drug companies started to share information
and market their products widely. Advertising campaigns in medical
journals, distribution of leaflets and other materials to medical doctors,
and sponsorship of scientific and educational symposia on depression
increased notably after the mid-1990s (Kanula, 2008).
One means by which the drug industry substantiated their message to
medical professionals was neuroscience. Accounts of depressive illness and
the effects of SSRIs were quite straightforward in the texts published by the
drug industry in Finland (Kanula, 2008). The purpose of companies’
education and marketing efforts was to underline the specificity of the new
drugs (Healy, 1997). First, the SSRIs were antidepressants and targeted at
clear-cut depressive disorders, although the selection of treatable disorders
tended to expand from depression after the drug has been on market a few
years (e.g. Huttunen, 1996; see Rose, 2004). Second, the essence of
depression was to be found in the neurotransmitter metabolism, particularly
in deficiency of serotonin in the brain, and the SSRI drugs were targeted
specifically at the function of serotonin receptors at the nerve endings by
inhibiting reuptake. This view was effectively presented to the Finnish
professional audience both visually and verbally (Kanula, 2008).
A neurochemistry concept of depression and a frame of thought for
understanding both the pathological process and the therapeutic effect
emerged and was gradually – as the old century waned and the new began –
consolidated as a part of wider mental health discussion in Finland. This
140 ILPO HELÉN

happened in parallel with the rapid increase of the consumption of the SSRI
antidepressants. However, psychiatric opinion did not aggressively promote
the new drugs; on the contrary, the professional discussion about SSRIs was
quite moderate and cautious.
Clinical perspectives were dominant in the discussion, and – unlike in the
USA – there were hardly any signs of a ‘Prozac hype’. Authorised guidelines
and consensus statements were particularly laconic, presenting SSRIs as just
another addition to an already substantial arsenal of antidepressants.
Moreover, many authors mentioned repeatedly that empirical evidence of
the effects of SSRIs in mild depressions was weak, whereas others expressed
worries about the increase of ‘mechanical’ drug treatments for depression by
GPs – linking with a more general concern over an expansion of
psychotropic medication.
However, the picture of the ‘new generation antidepressants’ promoted in
Anglo-American scientific discussions and through marketing activities of
pharmaceutical companies was accepted without much qualification in the
Finnish mental health discussion. SSRIs were claimed to remove the
requirement of establishing the optimal therapeutic dosage for each patient,
which was a problem with the tricyclic drugs. With an SSRI, medication
could be started at recommended dosage with (almost) all patients, and the
need to monitor and control the patient was not as urgent as with tricyclic
compounds. For physicians in primary care, this made the new drugs
actually usable. Furthermore, the message that SSRIs had fewer and less
harmful side effects than older antidepressants was well received. According
to Finnish psychiatrists, tricyclic antidepressants were unsuitable for up to
40% of depressed patients due to side effects, whereas such a limitation has
vanished almost completely with SSRIs (e.g. Isometsä, 1999; Rimón &
Rimón, 1992). Because the SSRIs were considered handy to prescribe,
apparently safe and convenient to use, their applicability expanded in an
exceptional manner, especially in primary care. Such reasoning backed up
the SSRI boom that took off in Finland in the second half of the 1990s
(Helén, 2007a).
The cautious attitude to the serotonin theory of depression by the Finnish
mental health experts was congruent with the moderate tone of clinical
discussion of the SSRIs. It was repeatedly mentioned that the empirical
evidence for the theory was not very strong, and Finnish psychiatrists were
also inclined to think of neurotransmitter metabolism in a wider context of
neurochemical and physiological functions of the brain. However, the
aforementioned discussion of drug effects in depression treatment influenced
the Finnish mental health discourse by introducing neuroscientific concepts.
Neuroscience in Mental Health Care 141

It opened up a space of thought within which depression, mental illness and

even mental health in general could be seen and discussed in terms of
neurochemistry. The tendency to favour ‘holistic’ or ‘systemic’ views over
the claims of neurobiological specificity quite likely reinforced that
influence. An excerpt from an ordinary depression guidebook exemplifies
the new opportunity to deploy neuroscience and to develop mental health
reasoning embedded in research in neurochemistry. Tapani Tamminen, a
depression expert, presented a sketch similar to the following in his book
Mielet maasta (2001) (Fig. 1).
In so doing, Tamminen put depressive disorders in a context in which a
map of human emotions, behaviour or even personality can be drawn on the
basis of contemporary understanding of neurochemistry. However, this sort
of view was rather marginal in the Finnish mental health discourse on
depression well into the twenty-first century.

BEYOND SEROTONIN
In 2009, The Finnish Psychiatric Association released a new guideline for
depression treatment, slightly revised from the 2004 version. The medical

anxiety SEROTONIN
alertness

mood
NORADRENALINE thinking impulsivity
memory

appetite
sexuality

pleasure
vigour
DOPAMINE

Fig. 1. A Summary of Neurotransmitter Effects (Tamminen, 2001, p. 77).

142 ILPO HELÉN

journal Duodecim published a special issue on depression in the same year

(Duodecim, 2009). Regarding the role of neuroscience, this compilation of
articles is significantly different from the mainstream mental health discourse
in the previous 15 years. Epidemiological and clinical perspectives remain
primary, and the treatability of depressive disorders continues to represent the
main focus of discussion. However, a neurobiological approach to depression
is situated at the heart of the text as an explanatory framework. This concept
is based on state-of-the-art neuroscience and is more coherent than earlier
discussions regarding the biology of depressive disorders.
Two papers form the core of the special issue. In the first article, ‘Miksi
ihminen masentuu?’ (Why does a person become depressed?), psychiatrists
Tarja Melartin and Erkki Isometsä focus on the neurobiology of depression,
whereas Eero Castrén, a prominent Finnish neuroscientist, discusses neural
plasticity and its relation to recovery from depression. Melartin and
Isometsä do not attempt to explain the onset of a depressive episode but
rather how some individuals are predisposed or susceptible to depression.
The emphasis of personal ‘vulnerability’ to depression that was eminent
already in the mid-1990s is now even stronger. This trend is congruent with
a central tendency of current Western psychiatry to emphasise risks factors
and personal susceptibility to mental disorders (Rose, 2007).
Melartin and Isometsä outline ‘the disturbance of brain functions in
depression’ in the following way:

metabolism of cortex is dampened down and metabolism of the limbic system is

activated. The excited activity in the brain regions central to emotional life cannot be
controlled by the brain regions regulating cognitive functions. [y] [G]enotype,
temperament, early traumas, ongoing stress as well as their mutual, cumulative effects
are factors predisposing depression. (Melartin & Isometsä, 2009, pp. 1777–1778)

This concept is derived from multiple specialities of neuroscience and

resembles an overview by Belmaker and Agam (2008) in The New England
Journal of Medicine. Melartin and Isometsä focus first on stress as a
predisposing factor and present results of studies in neuroendocrinology of
stress hormones and their regulation. Then they move on to present a multi-
factorial picture of the genetics of depression, emphasising that the genetic
aspect is related to personal susceptibility: ‘‘The risk to fall ill with
depression is influenced by numerous genes, their likely interaction, and
environmental factors together’’ (Melartin & Isometsä, 2009, p. 1774).
Melartin and Isometsä then shift from genes to neurotransmitters. The
serotonin theory is dethroned as they underline that empirical evidence for
Neuroscience in Mental Health Care 143

monoamine hypothesis is weak and the simple versions of theory are

abandoned by the international discussion. Their conclusion is that:
dampening of serotonin metabolism cannot precipitate depression by itself [y]
Disturbances in monoamine metabolism are connected with the pathological mechanism
of depression but only as a single factor. (Melartin & Isometsä, 2009, p. 1775)

The final elements in the overview on neurobiology of depression by

Finnish psychiatrists are related to anatomy and physiological functions of
the brain. They put depressive illness in the context of studies and theories
on neurotrophic factors, neural plasticity and neuroregeneration (see
Castrén, 2009). Attention given to these topics in mental health discourse
reflects the great interest of Finnish neuroscientists in neural plasticity and
neurotrophic factors (e.g. Airaksinen, Arumäe, Rauvala, & Saarma 1999;
Castrén, 2004; Castrén, Võikar, & Rantamäki, 2007; Lindholm et al., 2007).
Melartin and Isometsä (2009) adopt these ideas and relate elements of their
prior discussion – regulation of stress hormones, serotonin transporter gene,
anatomical changes in hippocampus and amygdala – to an idea that
depression is essentially a disorder of neural networks contributing to the
regulation of mood. In depression, those networks become thinner and they
are stagnated. Accordingly, recovery from depression happens when new
neurons are generated and connections between neurons are increased by
the influence of neurotrophic factors. The new theory suggests that the SSRI
antidepressants contribute to this process of neuroregeneration (Castrén,
2004, 2005, 2009).
The discussion described above in one special issue of Duodecim, targeted
widely at mental health professionals, introduced a neurobiological frame-
work to think of depression as an abnormal stress reaction of the human
organism and the person. The older concept of depression biology and the
psychodynamic notions which attached depression to the experience of loss,
object relations and the self were to a great extent eclipsed by the novel
understanding that also extended to reframe the concepts of mood and
emotions in the Finnish mental health discourse. Older genetics was also
incorporated in this neuroscientific frame, weakening the hold of the
psychodynamic approach.
Besides situating depressive illness in the landscape of stress the new
discourse provides the mental health discussion with a new vocabulary to
describe depression. A variety of outside impulses and circumstances
making the person vulnerable to depression and contributing to the onset of
illness are now ‘stressful life events’; personality and differences between the
individuals are conceptualized as ‘susceptibility’; and the essential
144 ILPO HELÉN

pathological mechanisms in depression are presented in terms of biochem-

istry and neurophysiology.
The ideas and research findings put into the focus of theoretical discussion
on depression by the 2009 special issue of Duodecim were not particularly
new in the international mental health discourse (e.g. Andreasen, 2001), and
the same elements of the discussion have been presented also in the Finland
discussion since the late 1990s. For example, the idea of depressive disorder
as a neurobiologically underpinned abnormal stress reaction was deployed
by Peter Kramer (1994) to substantiate his claim that SSRIs can change the
personality of depressed persons. A coherent neuroscientific stress model of
depression can also be found in A Mood Apart (1997) by Peter Whybrow, a
neuropsychiatrist from UCLA, in which a ‘psychobiological’ synthesis of
mood disorders (Whybrow, Akiskal & McKinney, 1984) is further
developed. Both Kramer’s and Whybrow’s books were translated into
Finnish. Similar approaches to the neurobiology of depression were also
presented in key Finnish textbooks on depression (e.g. Salokangas, 1997;
Tamminen, 2001), although they did not give the stress model a salient role
in their theoretical discussion. Furthermore, Finnish scholars became
increasingly interested in the neurobiology of stress and its relationship to
mental illness and in the neuroscience of emotions and their pathologies,
synthesised and popularised particularly by Antonio Damasio (1994). To an
extent, these ideas were taken on board by authors of papers in leading
Finnish medical journals (e.g. Karlsson et al., 2007; Korkeila, 2008;
Leppänen, 2007; Pitkänen, 2003), contributing to a broad – but by no means
complete – turn towards a neurobiological understanding of depression in
the early years of the twenty-first century.

DISCUSSION: DEPRESSION TAKEN APART

On the basis of my analysis, it seems that the foothold of neurosciences in

the Finnish mental health discussion is firmer now than it was two decades
ago. Moreover, the stress model of depression embedded in neurobiology
and, to some extent, in molecular genetics, appears more solid now than
in the mid-1990s and provides a framework for understanding depression,
vis-à-vis the psychodynamic frame of thought. Two developments have
facilitated this change. First, mental health professionals in many countries
became increasingly disenchanted with the therapeutic efficacy of SSRI
antidepressants, and the serotonin theory of depression has been refuted by
many – even though it still has significant traction (Moncrieff, 2009). The
Neuroscience in Mental Health Care 145

winds of change have also reached Finland in recent years. It seems

paradoxical that this shift allowed a broader and more systematic
neurobiological view of depression to extend its foothold in the mental
health discourse. At the same time, psychotherapeutic discourse – once
dominant in the discussion – has become theoretically flat and eclectic, as
regards to both metapsychology and the concept of the therapeutic process.
Notions that there are no significant differences in therapeutic effects
between the different forms of psychotherapy, and a belief that what matters
most is the supportive and trustworthy relationship between the therapist and
the patient, have become central in professional discussions of depression (e.g.
Aaltonen, Jaakkola, Luutonen, Pölönen, & Riikonen, 2009), partly derived
from the results of the Helsinki psychotherapy project in which therapeutic
outcomes of different forms of therapy with different mental disorders were
compared for many years (Knekt & Lindfors, 2004). Thus, psychotherapeutic
approaches have left room for other theoretical and explanatory frameworks
– and individuals swayed by neurobiology have been active in advocating
their approaches (e.g. Carlson et al., 2000; Lehtonen & Castrén, 2000).
However, the emergence of depression as a brain disorder should be
situated in the big picture of the mental health discourse on depression in
Finland in order to clarify the role and influence of neuroscientific
reasoning. Currently, psychiatrists all over the world consider depression
a target area of mental health care and as a multitude of combinational
‘symptoms’; consequently, the scope of depressive experience and conduct
has widened and the boundaries between normal and pathological sadness
have become more blurred (Helén, 2011). This is not helped by the fact that
depression is viewed as a multi-factorial disorder with a complex aetiology.
This view is at the heart of clinical reasoning, dominating mental health
discourse in Finland and elsewhere. Experts inclined towards neuropsy-
chiatry are also sympathetic to multi-factorial models. As a focus of mental
health care, depression is thus polymorphous and vague and lacks the
precision required from an object of science. Thus, it does not seem to be a
good target candidate of neuroscientific research. Nevertheless, research on
the neurobiology of depression has steadily increased during the past two
decades, and, as my analysis demonstrates, understandings of depression as
a brain disorder are subverting or even replacing the former dominant
psychotherapeutic notions – at least in certain strands of mainstream
Finnish mental health care.
Yet, while the neurosciences bring the brain to the forefront of discussions
about depression, they do not manage to present a unitary and stable notion
of the brain as the site of this or other mood disorders. What the depressed
146 ILPO HELÉN

brain is in mental health discourse seems to change and multiply over time.
The fragmented remarks about the neurobiology of depression in the late
1980s and early 1990s were, in the late 1990s and early 2000s, overshadowed
by a neurochemical view of brain functions and disorders, with the focus on
metabolic activity of neurotransmitters and receptors. Today, this ‘serotonin
view’ is eclipsed by and merging with discussions of neural networks and
brain regions which are seen as elementary for biological regulation of
human stress reactions and emotional responses. It also seems that the
neuroscience perspectives adopted by the mainstream mental health
discourse are less fragmented and more systematic than a decade ago, such
that a genuinely neuroscientific frame of reasoning over depression and
other mental disorders can be identified.
Although understandings of ‘the’ biology of depression have become
more precise and specific in terms of neurobiology, the advance of the
neurosciences has provided mental health discourse with a multiplied view
of the brain as the site of disordered mental functions. A mental health
expert who tries to probe depression as a brain disorder in mainstream
mental health discussions will face concepts, research results and findings
from more numerous sources – e.g. molecular genetics, animal models
in experimental studies, brain imaging, and new research techniques in
neurophysiology – than ever before. The foothold of the neurosciences in
mental health reasoning has become more solid, with the neurologic idiom
increasingly present in the professional literature on depression. On top of
the notion of depression as a multi-factorial disorder, neuroscience provides
a view that the depressed brain is multiple (cf. Mol, 2002), accompanied by a
learned opinion that it does not seem plausible that the pathogenesis of
depression can be explained by a single model (e.g. Belmaker & Agam, 2008;
Castrén, 2009).
Nonetheless, mental health reasoning over depression and the develop-
ment of new treatments do not seem to be paralysed by the diffusion, even
confusion, of this psychiatric concept. According to Annemarie Mol (2002),
such a situation is not extraordinary in medical practice but, on the
contrary, rather usual. Biomedicine is today characterised by profound
specialisation, extensive application of diagnostic and measurement
technology and complex techniques of treatment. Mol’s ethnography of
the treatment of atherosclerosis of leg arteries in a Dutch hospital
demonstrates clearly this condition of medical practice as being dispersed
in numerous settings of research, diagnosis, treatment, and care. As a result,
medical objects and reality become multiplied through diverse efforts to
observe, verify and define pathological facts. However, ‘‘incompatibilities
Neuroscience in Mental Health Care 147

between objects enacted are no obstacle to medicine’s capabilities to

intervene’’ (Mol, 2002, p. 115).
Similarly, psychiatric interventions in and treatment of depression
have become more intense, systematic and extensive during the past three
decades – despite the diffusion of mental health care and increasing
multiplicity of depression. But how exactly is the epistemic and ontological
polymorphism of depression managed in current mental health care? Mol’s
central thesis is that the basic requirement of the functioning of the medical
machinery is the distribution of epistemological and ontological premises
between the different sites in which illness is studied, tested, diagnosed,
treated and the patients cared – in Mol’s terms, ‘enacted’ – in such a manner
that ‘‘the incompatible variants of an object are separated out’’ (Mol, 2002,
p. 115). In each site, objects are moulded and defined to match the practice,
technology and performance specific to that site, and medical realities of
other sites are bracketed out.
My analysis suggests that the distribution of depressive illness in Finnish
mental health care takes place according to a great divide between
psychiatric research and clinical work. Clinical approaches dominate the
mental health discourse on depression, where the focus of reasoning is on
diagnosing patients and treating their illness on the basis of symptoms listed
in authorised disease classifications. Moreover, the epidemiological view,
related to the notions of depression as a public health problem and risk
factors of depression, has a profound impact on clinical understanding. In
the realm of psychiatric research, however, neurobiological understandings
of depression dominate. Depression is considered a disorder of brain
functions, and neuroscientists attempt to detect its specific causes and
mechanisms using multiple methods and techniques.
Although neuroscientific findings are introduced and discussed in the
mainstream mental health discourse and the idea of the depressed brain is
made familiar to mental health experts, neurobiology is almost entirely left
outside the core of clinical reasoning about the diagnosis, treatment and
prevention of depression. The clearest illustration of such a demarcation is
the authorised guidelines for depression management (e.g. Depressio:
Käypä hoito, 2004; Depression in primary care, 1993a, 1993b; Käypä
hoito: Depressio, 2009; Lehtinen, 1994; NICE, 2004, 2007, 2009; Paykel &
Priest, 1992): there is no reference to specific neurobiological aspects of
depression or to research results, and discussions about and instructions for
antidepressants are restricted to purely clinical issues of efficacy, dosage and
adverse drug effects, and patient compliance with treatment. The perspective
of these guidelines is delineated by psychiatric nosography, epidemiology and,
148 ILPO HELÉN

to some extent, clinical psychopharmacology. In a wider mental health

discourse these modes of reasoning sketch out a clinical landscape in which
aetiological explanations and theories of pathogenesis of depression are
considered secondary and complexities of causal relationships are bracketed
out. For the purposes of treatment and care, the idea of depression as a multi-
factorial disorder – a condition of the organism, a pattern of behaviour and a
personal experience caused jointly by biological, psychological and social
factors – seems to be a good enough conceptual framework.
Although neo-Kraepelinian nosologies and epidemiology dominate
clinical reasoning, broad and eclectic psychotherapeutic reasoning is also
influential in defining the rationale of the treatment and care of depressed
patients: within the clinical realm, psychotherapeutic thinking opens up a
horizon of care in which ‘depression’ is conceived of and treated as situated;
i.e. in the context of the person’s life history, her social and psychological
environment and conduct of living. Thus, depressive illness is distributed
among three worlds of mental health, each of them founded on a particular
enacted ontology of depression. Within the clinic, there is the realm of
general management of depression, ranging from public policy to standard
clinical procedures, in which depression as an object of classification and
calculation is defined in terms of risks and symptoms. In this setting,
depression is often seen as a phenomenon related to population, and
therefore epidemiology and ‘universal’ classifications provide the main
definitions of what depression is (Helén, 2007b). Another main building
block of clinical practice is the realm of treatment and care in which
depression is inclined to be thought of in terms of personal life situation,
biography or characteristics of personality. Psychotherapeutic frames of
reasoning are relevant here, and within them it is the individual, the patient
as a case, that is central to what kind of depression is defined. Finally,
depression is conceived of as something located or happening in the brain in
the realm of research. Depression as a cerebral object is multiplied by
numerous research areas and techniques into molecules, processes of
physiology or biochemistry, neural information networks, and so on.
My analysis of the ‘Finnish case’ suggests that in the assemblage – or
distributed reality – of mental healthcare, the idea of the depressed brain or
the concept of depression based on neurobiology of stress reactions has
limited influence on the ways depressive illness is conceived of in clinical
practice. Even more marginal is the influence of neurosciences regarding the
rationale of treatment, except as a provider of the dominant device of
treatment. Within the current practice of depression management, both in
public health campaigns for prevention and in clinical treatment and care, it
Neuroscience in Mental Health Care 149

is not the brain that is treated but risks, symptoms and persons. The
treatment may considerably affect the brain but these effects are not of
major importance; instead, what is salient is the reduction of risk, the
alleviation of symptoms, and the care of patients.

REFERENCES
Andreasen, N. (2001). Brave new brain. New York, NY: Oxford University Press.
Applbaum, K. (2006). Educating for global mental health: The adoption of SSRIs in Japan. In:
A. Petryna, A. Lakoff & A. Kleinman (Eds.), Global pharmaceuticals (pp. 85–110).
Durham: Duke University Press.
Belmaker, R. H., & Agam, G. (2008). Mechanisms of disease: Major depressive disorder. New
England Journal of Medicine, 358, 55–68.
Callahan, Ch., & Berrios, G. (2005). Reinventing depression. Oxford: Oxford University Press.
Castel, R., Castel, F., & Lovell, A. (1982). The psychiatric society. New York: Columbia
University Press.
Castrén, E. (2005). Is mood chemistry? Nature Reviews Neuroscience, 6, 241–246.
Damasio, A. (1994). Descartes’ error. New York: G.P. Putnam’s Sons.
Engel, J. (2008). American therapy. The rise of psychotherapy in the United States. New York:
Gotham.
Grob, G. (1991). From asylum to community. Princeton, NJ: Princeton University Press.
Hale, N. (1995). The rise and crisis of psychoanalysis in the United States. New York: Oxford
University Press.
Healy, D. (1997). The antidepressant era. Cambridge, MA: Harvard University Press.
Healy, D. (2002). The creation of psychopharmacology. Cambridge, MA: Harvard University
Press.
Healy, D. (2004). Let them eat Prozac. New York: New York University Press.
Helén, I. (2007a). Multiple depression: Making mood manageable. Journal of Medical
Humanities, 28, 149–172.
Helén, I. (2007b). Masennus massamitassa: Epidemiologinen välineistö ja psykiatrian
muodonmuutos. tiede & edistys, 32, 103–118.
Helén, I. (2011). The depression paradigm and beyond. The practical ontology of mood
disorders. Science Studies, 24(1), 81–112.
Helén, I., Hämäläinen, P., & Metteri, A. (forthcoming). Komplekseja ja katkoksia – Psykiatrian
hajaantuminen suomalaiseen sosiaalivaltioon. In: I. Helén (Ed.) Reformin pirstaleet.
Mielenterveyspolitiikka hyvinvointivaltion jälkeen. Tampere: Vastapaino
Horwitz, A. (2002). Creating mental illness. Chicago: Chicago University Press.
Horwitz, A., & Wakefield, J. (2007). The loss of sadness. Oxford: Oxford University Press.
Kanula, S. (2008). Oireista elämänlaatuun – masennuksen markkinointi lääkäreille. Sosiologia,
45, 322–341.
Knekt, P., & Lindfors, O. (2004). A randomized trial of the effect of four forms of psychotherapy
on depressive and anxiety disorders. Design, methods, and results on the effectiveness of
short-term psychodynamic psychotherapy and solution-focused therapy during a one-year
follow-up. Helsinki: Kela.
150 ILPO HELÉN

Kramer, P. (1994). Listening to Prozac. London: Fourth Estate.

Isometsä, E., Henriksson, M., Aro, H., Heikkinen, M., Kuoppasalmi, K., & Lönnqvist, J.
(1994). Suicide in major depression. American Journal of Psychiatry, 151, 530–536.
Lönnqvist, J. (1988). National suicide prevention project in Finland: A research phase of the
project. Psychiatria Fennica, 19, 125–132.
Mathers, C. D., & Loncar, D. (2006). Projections of global mortality and burden of disease
from 2002 to 2030. PLoS Medicine, 3, 2011–2030.
Metzl, J. (2003). Prozac on the Couch. Durham: Duke University Press.
Mol, A. (2002). The body multiple: Ontology in medical practice. Durham: Duke University
Press.
Moncrieff, J. (2009). The myth of the chemical cure (revised ed.). Houndmills: Palgrave.
Pickersgill, M. (2010). From psyche to soma? Changing accounts of antisocial persona-
lity disorders in the American Journal of Psychiatry. History of Psychiatry, 21,
294–311.
Pickersgill, M. (2011). ‘Promising’ therapies: Neuroscience, clinical practices, and the treatment
of psychopathy. Sociology of Health & Illness, 33, 448–464.
Pilgrim, D. (2002). The biopsychosocial model in Anglo-American psychiatry: Past, present and
future? Journal of Mental Health, 11, 585–594.
Radden, J. (2003). Is this dame melancholy? Equating today’s depression and past melancholia.
Philosophy, Psychiatry & Psychology, 10, 37–52.
Rose, N. (2004). Becoming neurochemical selves. In: N. Stehr (Ed.), Biotechnology: Between
commerce and civil society (pp. 89–126). New Brunswick: Transaction.
Rose, N. (2006). Disorders without borders? The expanding scope of psychiatric practice.
BioSocieties, 1, 465–484.
Rose, N. (2007). The politics of life itself. Princeton: Princeton University Press.
Schildkraut, J. J., Orsulak, P., Schatzberg, A., Gudeman, J., Cole, J., Rohde, W., & LaBrie, R.
(1978). Toward a biochemical classification of depressive disorders. Archives of General
Psychiatry, 35, 1427–1433, 1436–1439.
Shorter, E. (1997). A history of psychiatry. New York: Wiley.
The Finnish statistics on medicines (1990–2009). Helsinki: National Health Agency for Medicines
& Social Insurance Institution.
WHO. (2009). Improving health systems and services for mental health. Geneva: WHO.
Whybrow, P. (1997). A mood apart. New York: Basic Books.
Whybrow, P., Akiskal, H., & McKinney, W. (1984). Mood disorders: Toward a new
psychobiology. New York: Plenum.

Sources
Aaltonen, J., Jaakkola, L., Luutonen, S., Pölönen, R., & Riikonen, E. (2009). Masennuspo-
tilaan psykoterapiat. Duodecim, 125, 1787–1794.
Achté, K. (1999). Psykofarmakologian vuosikymmenet. In: S. Kähkönen & T. Partonen (Eds.),
Mielen lääkkeet – lääkkeen mieli. Psykofarmakologian historia Suomessa (pp. 18–29).
Helsinki: Duodecim.
Achté, K., & Tamminen, T. (Eds.). (1987). Lääkäri ja depressiopotilas. Helsinki: Depression-
vastustamistyöryhmä & Ciba-Geigy.
Achté, K., & Tamminen, T. (Eds.). (1993). Depressio ja sen hoito. Klaukkala: Recallmed.
Airaksinen, M., Arumäe, U., Rauvala, H., & Saarma, M. (1999). Neurotrofiset kasvutekijät
hermoston kehityksessä ja muovautumisessa. Duodecim, 115, 595–605.
Neuroscience in Mental Health Care 151

Bredbacka, P-E. (1994). Vakavat mielialahäiriöt ja perinnöllisyys. Duodecim, 110, 252–260.

Carlson, S., Airaksinen, M. S., Alho, H., Castrén, E., Färkkilä, M., Holopainen, I., y Sams,
M. (2000). Aivotutkimuksen lunastetut lupaukset ja tulevaisuudennäkymät. Suomen
Lääkärilehti, 47, 4871–4873.
Castrén, E. (2004). Neurotrophins as mediators of drug effects on mood, addiction and
neuroprotection. Molecular Neurobiology, 29, 289–301.
Castrén, E. (2009). Hermoston muovautuvuus ja masennuksesta toipuminen. Duodecim, 125,
1781–1786.
Castrén, E., Võikar, V., & Rantamäki, T. (2007). Role of neurotrophic factors in depression.
Current Opinion in Pharmacology, 7, 18–21.
Depressio – Käypä hoito –suositus. (2004). Duodecim, 120, 744–764.
Depression: Management of depression in primary and secondary care. (2004). NICE clinical
guideline 23.
Depression: Treatment and management of depression in adults. (2009). NICE clinical guide-
line 90.
Depression (amended): Management of depression in primary and secondary care. (2007).
NICE clinical guideline 23 (amended).
Depression in primary care. Vol. 1: Detection and diagnosis. Clinical Practice Guideline Nr 5
(U.S. Department of Health and Human Services, 1993a).
Depression in primary care. Vol. 2: Treatment of major depression. Clinical Practice Guideline Nr
5 (U.S. Department of Health and Human Services, 1993b).
Duodecim 110(1994):3 Teema: Masennus.
Duodecim. 125(2009):16 Teema: Masennus.
Huttunen, M. (1995). Masennustilojen biologisesta taustasta. In: Depressio – tunnistaminen ja
hoito (pp. 66–78). Konsensuskokous 28–30.11.1994. Helsinki: Suomen Akatemia ja
Suomalainen Lääkäriseura Duodecim.
Huttunen, M. (1996). Masennuslääkkeiden laajenevat käyttöaiheet. Duodecim, 122,
1879–1888.
Isometsä, E. (1999). Mielialahäiriöiden biologisen tutkimuksen ja lääkehoidon historiaa. In:
S. Kähkönen & T. Partonen (Eds.), Mielen lääkkeet – lääkkeen mieli. Psykofarmako-
logian historia Suomessa (pp. 34–44). Helsinki: Duodecim.
Korkeila, J. (2008). Stressi, tunteiden säätely ja immuniteetti. Duodecim, 124, 683–692.
Karlsson, L., Melartin, T., & Karlsson, H. (2007). Lapsuuden stressi uhkaa aikuisiän terveyttä.
Suomen Lääkärilehti, 62, 3293–3299.
Kähkönen, S., & Partonen, T. (Eds.). (1999). Mielen lääkkeet – lääkkeen mieli. Psykofarma-
kologian historia Suomessa. Helsinki: Duodecim.
Käypä hoito: depressio (2009). http://www.kaypahoito.fiwww.kaypahoito.fi. consulted 19
October 2009.
Lehtinen, V. (Ed.) (1994). Depression hoito terveyskeskuksessa. Tunnistamis- ja hoitomalli.
Helsinki: Stakes.
Lehtonen, J., & Castrén, E. (2000). Psykiatrian muuttuva viitekehys neurobiologian
aikakaudella. Duodecim, 116, 1962–1968.
Leppänen, J. M. (2007). Depressioon liittyvät emotionaaliset muutokset ja niiden hermostolli-
nen perusta. Duodecim, 123, 297–303.
Lindholm, P., Voutilainen, M., Laurén, J., Peränen, J., Leppänen, V.-M., Anderssoo, J.-O., y
Saarma, M. (2007). Novel neurotrophic factor CNDF protects and rescues midbrain
dopamine neurons in vivo. Nature, 448, 73–78.
152 ILPO HELÉN

Linnoila, M., & Virkkunen, M. (1992). Biological correlates of suicidal risk and aggressive
behavioral traits. Journal of Clinical Psychopharmacology, 12(suppl. 1), 21S–26S.
Mattila, M. J., & Mattila, M. (1991). Serotoniinselektiiviset lääkeaineet psykiatriassa. Suomen
Lääkärilehti, 46, 238–244.
Melartin, T., & Isometsä, E. (2009). Miksi ihminen masentuu? Duodecim, 125, 1771–1779.
Overall, J., Hollister, L., Johnson, M., & Pennington, V. (1966). Nosology of depression and
differential response to drugs. JAMA, 195, 946–949.
Paykel, E. S., & Priest, R. G. (1992). Recognition and management of depression in general
practice: Consensus statement. British Medical Journal, 305, 1198–1202.
Pitkänen, A. (2003). Tunteiden neurobiologiaa. Duodecim, 119, 1471–1478.
Poutanen, O. (1996). Depression in the primary health care patient: Prevalence, recognition,
definition and the consulting situation. Psychiatria Fennica, 27, 115–126.
Poutanen, O., & Vuorinen, M. (1996). Masennus. Masennuslääkkeet, vaikutus ja masennuksen
hoitomuodot. Helsinki: Mielenterveyden keskusliitto.
Rimón, M., & Rimón, R. (1992). Depression hoito terveyskeskuksessa. Suomen Lääkärilehti,
47, 2381–2385.
SA. (1995). Depressio – tunnistaminen ja hoito. Konsensuskokous 28–30.11.1994. Helsinki:
Suomen Akatemia ja Suomalainen Lääkäriseura Duodecim.
Salokangas, R. (1997). Kliininen depressio: Mitä se on ja miten sitä hoidetaan? Porvoo et al.:
WSOY.
Spoov, J., & Syvälahti, E. (1996). Depressiolääkkeet. Käyttöaiheet ja hoidon periaatteet.
Helsinki: Lääkelaitos & Kela.
Syvälahti, E. (1986). Masennuslääkkeiden vaikutusmekanismit. Suomen Lääkärilehti, 41,
2603–2608.
Syvälahti, E. (1993). Depression biologia ja lääkkeiden farmakologia. In: K. Achté &
T. Tamminen (Eds.), Depressio ja sen hoito (pp. 241–256). Klaukkala: Recallmed.
Syvälahti, E. (1994). Biologiset tekijät vakavissa masennustiloissa. Duodecim, 110, 261–266.
Tamminen, T. (1995). Depression tunnistaminen: Kliininen diagnostiikka ja hoidon arviointia.
Espoo: Novo Nordisk.
Tamminen, T. (2001). Mielet maasta. Klaukkala: Recallmed.
Tamminen, T., & Achté, K. (1994). Depression lääkehoito. In: Käytännön moderni
psykofarmakologia (pp. 43–76). Klaukkala: Recallmed.
Tienari, P. (1993). Depressioiden epidemiologia ja genetiikka. In: K. Achté & T. Tamminen
(Eds.), Depressio ja sen hoito (pp. 15–32). Klaukkala: Recallmed.
Virkkunen, M., & Linnoila, M. (1990). Violent behavior, serotonin and glucose metabolism.
Clinical Neuropharmacology, 13, 255–256.
‘‘WE HAVEN’T SLICED OPEN
ANYONE’S BRAIN YET’’:
NEUROSCIENCE, EMBODIMENT
AND THE GOVERNANCE OF
ADDICTION

Julie Netherland

ABSTRACT

Neuroscientific technologies have begun to change the ways in which we

understand, respond to, and treat drug addiction. According to addiction
researchers, neuroscience marks a new era because of its potential to
locate the causes of addiction within the brain and to treat addiction
through altering neurochemistry. However, little is known about how
addiction neuroscience and new neurochemical treatments shape indivi-
duals’ experience of addiction and constitute new arrangements of
knowledge and power that shape subjectivity and governance. This
chapter addresses these domains by drawing on an analysis of scientific
literature about addiction neuroscience and qualitative interviews with
people being treated for addiction with buprenorphine, a pharmaceutical
treatment for opioid dependence. The chapter charts four major themes in
the addiction neuroscience literature (pleasure and the limbic system,
rationality and the role of the prefrontal cortex, theories of plasticity, and

Sociological Reflections on the Neurosciences

Advances in Medical Sociology, Volume 13, 153–177
Copyright r 2011 by Emerald Group Publishing Limited
All rights of reproduction in any form reserved
ISSN: 1057-6290/doi:10.1108/S1057-6290(2011)0000013011
153
154 JULIE NETHERLAND

the role of volition) and explores how each of these is incorporated,

adapted, or rejected by individuals being treated for addiction with a
pharmaceutical. This analysis demonstrates how neuroscientific ideas are
mediated by the lived experiences of those being treated under a
neuroscientific model. It also suggests that while neuroscientific interven-
tions, like pharmaceuticals, shape the experience of those being treated
for addiction, so too do many other forces, including social circumstances,
moral frameworks, the drive for autonomy, and the quest to be ‘‘normal.’’

...

It’s all hypothesis at this point yet because we haven’t sliced open anyone’s brain yet, but
it seems that normalizing the GABA receptor takes away the craving and anxiety that
one would typically experience in the absence of the drug. And it doesn’t appear to be
happening because of will power, love, God, discipline, family support, or anything else.
It seems to be happening because the protocol resets a faulty mechanism in the brain.

Sanjay Sabani of Hythiam Corporation talking about a new psychopharmaceutical

treatment for cocaine addiction. (New York Times, 2006)

INTRODUCTION

In the United States, the National Institutes on Drug of Abuse (NIDA) has
spent millions of dollars promoting the message: ‘‘addiction is a brain
disease.’’ As the epigraph to this chapter suggests, neuroscience is changing
the ways we understand, respond to, and treat drug addiction. The quote
also hints at some of the new ways in which addiction and addiction
treatment are being embodied within the brain and materialized in
biochemical processes. Between 1980 and 1989, 18 studies of the
neuroscience of addiction were published in the medical and scientific
literature; between 1990 and 1999, the number rose to 129. Between 2000
and 2009, 1,117 studies were published. Neuroscience has expanded to
encompass a wide array of medical and social phenomena, including
addiction (Vrecko, 2010a). Neuroscience not only explains ‘pathology’ –
increasingly, it is also a prism through which we understand all human
behavior. Rose (2003) has referred to this proliferation of neuroscientific
understanding and authority as the birth of the neurochemical self; the
‘neuromolecular gaze’ has become an ethos that provides a common vision
of life (Abi-Rached & Rose, 2010).
We Haven’t Sliced Open Anyone’s Brain Yet 155

While disease models of addiction have been around for decades, previous
attempts to explain addiction as a biological phenomenon have only been
partly successful (Dunbar, Kushner, & Vrecko, 2010a; May, 2001; Tiger,
2011; Valverde, 1998). Medical constructions of addiction have consistently
vied with paradigms that understand addiction as a criminal problem rooted
in a failure of morality or character. Moreover, historically, medical models
of addiction have been troubled because the diagnosis of addiction relies on
the self-report of a failure of will, and treatment has consisted of the
reassertion of will power to ‘kick the habit’ – rather than on biomedical
interventions per se (Valverde, 1997). According to addiction researchers,
neuroscience marks a new era because of its potential to locate the causes of
addiction within the brain and to treat addiction through neurochemical
fixes. From the perspective of addiction researchers, neuroimaging
technology holds the promise of making visible that which has heretofore
relied largely on ‘patient’ self-report: the diagnosis of addiction and the
efficacy of treatment.
Like other paradigms before it (e.g., genetics), neuroscience is shaping
new kinds of subjects and providing new contours to governance (Campbell,
2010; Fullagar, 2009; Rose, 2010; Vrecko, 2010a, 2010b). Neuroscience has
the potential to shape subjectivity, offering ‘‘new means for individuals to
understand themselves and manage their thoughts and behaviors’’ (Vrecko,
2006, p. 301). The proliferation of neuroscientific research and rhetoric to
explain addiction surfaces core questions inherent in addiction discourse
and in contemporary society more broadly, such as the role of pleasure,
rationality, and volition in the formation and governance of the self.
In this chapter, I examine the ways in which addiction neuroscience helps
constitute new arrangements of knowledge and power that shape
subjectivity and governance. Existing analyses of addiction neuroscience
have focused primarily on issues of craving (Keane & Hamill, 2010) and
have largely neglected the perspective of those being treated for addiction
under a neuroscientific model. This chapter expands the work of others by
including an exploration of neuroscientific discourse about rationality,
plasticity, and volition. In addition, while much scholarship on neurological
subjects has focused on the ‘‘‘downstream’ assimilation of neuroscientific
ideas by passive publics’’ (Pickersgill, Cunningham-Burley, & Martin, 2011,
p. 355), this chapter offers an empirical analysis of how individuals explain
themselves and their addiction, with an eye toward how subjectivity is, or is
not, shaped by a ‘‘folk neurology’’ (Vrecko, 2006). This project provides
evidence regarding how individuals being treated under a neuroscientific
paradigm actively engage with and resist that paradigm.
156 JULIE NETHERLAND

To explore these issues, I first offer background on the rise of addiction

neuroscience in the United States and introduce neuroscientific treatments
for addiction. The neuroscience of addiction is not a uniform paradigm but
rather a set of assemblages that are enacted differently by different actors
and in different settings (Mol, 2002). However, certain premises from the
neuroscientific literature on addiction are particularly prominent. I analyze
four major themes in addiction neuroscience literature and explore how each
of these themes is incorporated, adapted, or rejected by individuals being
treated for addiction with a psychopharmaceutical. Those four themes are:
first, pleasure and the limbic system; second, rationality and the role of the
prefrontal cortex; third, the influence of environmental factors and theories
of plasticity; and last, the place of volition in neuroscientific theories of
addiction.

Methods

The analysis of the scientific literature is based on PubMed searches of the

terms ‘‘addiction’’ and ‘‘neuroscience.’’ I focused on the last decade of
research and selected review articles and those articles most cited by other
researchers. I also reviewed the NIDA’s website for both scientific and
‘‘patient-centered’’ publications to better understand the discourse being
used to explain addiction neuroscience to those seeking information about
addiction – whether researchers, clinicians, or the general public.
To better understand how those being treated under a neuroscientific
paradigm both accommodate and resist that paradigm, I analyzed
qualitative interviews with 37 ‘patients’ being treated for opioid
dependence with the psychopharmaceutical buprenorphine. Buprenorphine
was originally developed as an analgesic and first became available as an
addiction treatment in the United States in 2002. It is a synthetic opiate used
to treat addiction to heroin or prescribed opiates. Sometimes called a
substitution or replacement therapy, buprenorphine is said to prevent
symptoms of withdrawal, block the ‘high’ caused by additional opiates,
and diminish cravings for other opiates (Fiellin & Pantalon, 2002; Merrill,
2002; National Association of State Alcohol and Drug Abuse Directors,
2006).
The interviews were conducted as part of the Buprenorphine and HIV
Integrated Evaluation & Support program (BHIVES), a five-year study of
projects integrating buprenorphine into HIV care settings. To participate in
the study, individuals had to be both HIV infected and addicted to opioids
We Haven’t Sliced Open Anyone’s Brain Yet 157

(according to the American Psychiatric Association Diagnostic and

Statistical Manual of Mental Disorder (fourth edition) criteria for opioid
dependence). The interviews took approximately 60–90 minutes and were
transcribed and analyzed using HyperResearch, a qualitative data-coding
program. This sample is ideal for looking at the influence of neuroscientific
paradigms because, compared to other groups of people who use drugs, they
were already familiar with and connected to medicine. In addition to being
in treatment for HIV, they were also seeking a medical intervention for
addiction and were enrolled in a study, which was framed around a
neuroscientific paradigm of treatment: buprenorphine. Unlike those not in
treatment or those being treated through a behavioral model, those in this
study had high exposure to a medical model of addiction.

BACKGROUND

This is Your Brain on Drugs

For decades, behavioral interventions have dominated drug treatment

(Substance Abuse and Mental Health Services Administration, 2008).
Indeed, programs focused on helping individuals achieve ‘abstinence’
through behavior change still make up the majority of treatment in the
United States. However, the brain disease model has come to dominate
addiction research and has recently received attention from social scientists
as well (Dunbar et al., 2010). As the brain disease model has gained traction,
technologies that target the biochemical processes of the brain have been
developed as potential interventions to treat addiction. Since its founding in
1990, NIDA’s medications development program has tested more than 50
medications to treat cocaine dependence and obtained FDA approval for 2
medications to treat opiate dependence (buprenorphine and levo-a-
acetylmethadol or LAAM). In 2004, the National Research Council and
Institute of Medicine produced a book on the use of immunotherapies,
vaccines, and a variety of sustained-release formulations of medications to
prevent and/or treat addiction (Harwood & Myers, 2004). And for the first
time in decades, U.S. medical doctors have been granted the right to treat
opioid addiction with certain psychopharmaceuticals in office-based settings –
a legislative change that many hope heralds the movement of addiction
treatment into the medical mainstream (e.g., Fiellin et al., 2002; Hanson, 2003;
Merrill, 2002; National Advisory Committee’s Subcommittee on Buprenor-
phine, 1999).
158 JULIE NETHERLAND

NIDA, the main funder of addiction research in the United States, is

behind much of the scientific and popular discourse about addiction as a
brain disease (Courtwright, 2010). In 2003, Nora Volkow, a prominent
neuroscientist who pioneered the use of PET scans in addiction research,
became the Director of NIDA. Since her appointment, she has vociferously
championed the brain disease model in both NIDA’s scientific and public
education arms. For example, in 2005, NIDA underwrote a widely cited issue
of the leading general science journal Nature devoted to addiction
neurobiology, and in 2007, NIDA, the Robert Wood Johnson Foundation,
and the cable network HBO produced a multipart series on addiction,
involving some of the most prominent addiction researchers in the world.
Supported by brain scans and interviews from neuroscientists, the message
that addiction is a brain disease came through loud and clear. NIDA has also
produced a series of curricula for elementary and high-school students to
explain addiction. These include: ‘‘Brain Power,’’ ‘‘Mind Over Matters,’’
‘‘Heads Up,’’ and ‘‘The Brain.’’ NIDA’s educational materials closely track
the scientific literature that has centered primarily on the biochemical changes
drugs cause in the dopamine receptor and limbic systems, the relationship
between drug use and prefrontal cortex of the brain, and the role of the brain’s
plasticity in both the causes and effects of drug use (Koob & Simon, 2009).
Addiction neuroscience – like other fields of neuroscience – employs
brain-imaging techniques. These include positron emission tomography
(PET) and functional magnetic resonance imaging (fMRI) (Dackis &
O’Brien, 2005) and, to a lesser extent, proton magnetic resonance spectro-
scopy (Licata & Renshaw, 2010). PET and fMRI have been used to show
how the brain responds to triggers or cues (e.g., Dackis & O’Brien, 2005)
and how the brains of those who have used drugs differ in their structure
and functioning from those who have not (e.g., NIDA, undated). Imaging
has been used to argue that drug dependency is a single disorder because
diverse drugs trigger a common neuronal response (Dackis & O’Brien, 2005;
Koob & Simon, 2009). Images of drug-related brain damage or craving-
induced brain activity are compelling and are liberally used throughout
NIDA’s educational materials. Yet, these brain images have not escaped
critique. In a review of fMRI technology, Logothetis notes that imaging
technology is a powerful tool, but the beautiful images it produces ‘‘often
mask the immense complexity of the physical, biophysical and engineering
procedures generating them’’ (2008, p. 870). And, several scholars have
noted that imaging technologies, far from being objective or neutral, are
shaped by their social and economic context (see, especially, Beaulieu, 2001,
2002; Dumit, 2004; Joyce, 2005).
We Haven’t Sliced Open Anyone’s Brain Yet 159

Neuroscientific Treatments for Addiction

The application of addiction neuroscience to prevent, diagnose, or treat

addiction is limited, not unlike the unrealized promise of gene therapies.
While brain imaging is widely used in addiction research, to date it has not
been employed as a diagnostic tool for addiction in clinical practice –
although many hope it will be (e.g., Koob & Simon, 2009). In terms of
treatment, an editorial in the aforementioned special issue of Nature noted:
‘‘our understanding of the neurobiology of disease has progressed
substantially [y but] researchers have been less successful in translating
this knowledge into effective therapies’’ (Anonymous, 2005, p. 1413).
Nonetheless, addiction neuroscientists have pursued a number of experi-
mental treatments that fall into three general categories: efforts to intervene
directly on the brain with different neurotechnologies, immunotherapies and
vaccines to prevent addiction and/or relapse, and pharmacological
strategies.
Researchers have developed several experimental therapies that intervene
directly on the brain. These include repetitive transcranial magnetic
stimulation (rTMS), which uses rapidly changing magnetic fields to induce
weak electrical currents and influence neuronal activity, and sterotactic
surgery, which involves drilling holes in the skull and inserting electrodes
into the brain. Vaccines for nicotine and cocaine, which prevent these drugs
from passing the blood–brain barrier, are currently being tested in clinical
trails. However, all of these approaches are experimental, and none are in
widespread use. The most advanced and widely used neuroscientific
treatments for addiction are psychopharmaceuticals. The use of drugs to
treat ‘real-life’ problems that have been recast as brain problems is neither
new nor unfamiliar to most people (Brenninkmeijer, 2010). Depression,
social phobia, and hyperactivity are just a few examples of social problems
or everyday personal problems that are now treated pharmaceutically
(Conrad & Schneider, 1992). Unique to addiction, however, is the
substitution of an illicit compound (and in some cases prescription
medications) with a legal one.
Between 2003 and 2007, the total sales volume for substance abuse
medications had an annual average growth rate of 62.2% (Mark, Kassed,
Vandivort-Warren, Levit, & Kranzler, 2009). However, in absolute terms,
the market remains small compared to other psychopharmaceuticals, like
antidepressants; in 2006, sales of substance abuse medications were $406
million, compared to $15 billion for antidepressants (Mark et al., 2009). The
criminal justice system – the single largest source of referrals to drug
160 JULIE NETHERLAND

treatment in the United States – favors behavioral over psychopharmaceu-

tical therapies in its mandated drug treatment programs for a variety of
reasons, ranging from the relative scarcity of medication-assisted treatment
programs to beliefs that such medications are, in fact, another kind of
‘‘drug’’ (National Association of State Alcohol and Drug Abuse Directors,
2006; Tiger, 2011). Of the hundreds of courts addressing driving under the
influence, only a handful use medications (Vrecko, 2009). Low sales are also
partly due to the fact that, although methadone has been around since the
1970s, there remain relatively few psychopharmaceutical treatments for
addiction. In addition to naltrexone (which has been used to treat
alcoholism, opiate addiction, and impulse control disorders, like kleptoma-
nia), disulfram (an aversion therapy that creates sickness when alcohol is
ingested), and acamprosate (used to treat alcoholism), buprenorphine is the
only addiction medication to enter widespread usage in the past 40 years.
Buprenorphine (a synthetic opioid) works by binding to the mu receptor
so that, when someone uses another opioid, the pleasurable effects are
blocked because the receptors are already filled. Heroin or other opiates are
literally blocked from impacting the brain’s pleasure system. Buprenorphine
is used to treat addiction to heroin and to prescribed opioids, like
oxycodone. Like methadone, it creates a physical dependence but is said
to cause less euphoria and have a lower risk of users overdosing than either
methadone or heroin. However, the biggest difference between buprenor-
phine and methadone is not pharmacological, but political. Buprenorphine
was scheduled differently by the U.S. Drug Enforcement Agency and,
therefore, can be prescribed by any doctor in an office-based setting. The
decision to schedule buprenorphine differently from methadone was due in
part to pressure from leading addiction medicine experts (National Advisory
Committee’s Subcommittee on Buprenorphine, 1999) and in part to
lobbying by the manufacturer of buprenorphine (Jaffe & O’Keeffe, 2003).
Thus, unlike methadone, buprenorphine is subject to strict government
oversight and therefore generally not dispensed through highly regulated
(and widely stigmatized) methadone clinics.

PLEASURE: OPIOID RECEPTORS AND THE

HIJACKED BRAIN
For many researchers, the modern age of addiction research began with the
discovery of brain opioid receptors in the 1970s. This breakthrough
eventually led to the acknowledgment that the brain has both opioid
We Haven’t Sliced Open Anyone’s Brain Yet 161

receptors and endogenous opioids, which ‘‘induce similar actions as

morphine’’ (van Ree, Gerrits, & Vanderschuren, 1999, p. 342). Like
externally introduced opioids such as heroin or oxycontin, endogenous
opioids block pain and cause pleasure by elevating levels of dopamine.
The notion that the brain’s dopamine system is the center of pleasure is
relatively recent and potentially expands the reach of neuroscience to
explain all manner of behavior, both ‘pathological’ and pleasurable. Indeed,
scans of the brain’s pleasure center ‘‘have revealed an embarrassment of
riches’’ (Reinarman, 2007; see also Vrecko, 2010b). Gambling, food, drugs,
beautiful faces, and maternal support all ‘‘light up’’ the pleasure center, and
scientists are now suggesting a common pathway theory: pleasurable
behaviors stimulate the dopamine system and, therefore, tend to be repeated
(ibid.). It has been claimed, for example, that substance and nonsubstance
additions are similar in ‘‘fundamental, mechanistic ways’’ (Frascella,
Potenza, Brown, & Childress, 2010, p. 2) – both ‘‘light up’’ the mesolimbic
dopamine reward system. However, too much ‘‘lighting up,’’ too much
pleasure, is pathological, and the ‘‘normal’’ brain becomes ‘‘hijacked’’ (see
Acker, 2010 for an interesting analysis of this metaphor). According to
neuroscientists, drugs ‘‘disrupt the volitional mechanisms by hijacking the
brain mechanisms involved in seeking natural reinforcement’’ (Volkow &
Li, 2005, p. 1430). The brain falls under the control of the compulsive quest
to recreate pleasure.
Like neuroscientists, participants in the BHIVES study acknowledged the
key role pleasure plays in their use of drugs as well as the effectiveness of
new treatments in blocking those pleasurable effects. Some understood this
explicitly in terms of the opioid receptor system. One participant said: ‘‘It
[buprenorphine] solves the problem, man. It fills the receptors and all is
good’’ (Ms. T). Another put it this way: ‘‘Bup is like a condom on the brain.
You know, you don’t feel the heroin’’ (Mr. S). Even those who lacked
scientific terminology widely understood buprenorphine blocks the pleasur-
able effects of heroin. In fact, several participants reported trying heroin
while on buprenorphine and concluded that it was a ‘‘waste of money’’
(Mr. C, Ms. C, Mr. D, Mr. R, Ms. T).
In addition to blocking the effects of heroin, buprenorphine was seen as
desirable because it did not itself cause a high. Moreover, those taking
buprenorphine often equated the absence of a high or excessive pleasure
with being ‘‘normal.’’

That’s what I’m getting at. It’s not high. It’s just like almost a drug that would make you
feel normal. [y] A drug that makes you feel extra normal. Extra normal. [y] I take my
162 JULIE NETHERLAND

dose, I feel it, but I don’t feel an overwhelming sense of well-being other than feeling
normal. (Mr. D)

In fact, feeling normal was mentioned by a majority of participants. In

addition to not feeling high, ‘‘normal’’ was equated with being able to
participate in the quotidian activities of daily life, like having breakfast, taking
care of children, going to school, and getting a job. As one woman said:

My life is not different. It’s normal. My life ain’t never been this normal. I’m able to pay
bills and do the right thing and [y] I eat breakfast, I take my medicine, and on my
hygiene, I take care of myself. (Ms. M)

While few participants expressed a technical or scientific understanding of

the limbic system, many perceived the medication as a means through which
they could block the pleasure of heroin and thereby diminish the impulse to
use it. Uncontrolled pleasure and the compulsion to seek it out were seen as
interfering with health or normality. But participants saw psychopharma-
ceuticals, like buprenorphine, as restricting pleasure and, in some cases,
restoring normality.
The constraint of pleasure and the quest to feel ‘‘normal’’ help to produce
a subject that is consistent with neoliberalism. According to O’Malley and
Valverde (2004), the linking of drugs, pleasure, and normality directly
corresponds with neoliberal forms of governance that require subjects who
are responsible, rational, and independent. Some kinds of substance-
induced pleasure – drinks after work – that align with the goals of liberal
governance are acceptable. However, pleasure that disrupts a subject’s
ability to be governed and, more importantly, to govern her or himself is
deemed pathological and must be managed (see also Bergschmidt, 2004;
Bourgois, 2000; Campbell, 2010). Neuroscientific treatments offer some
drug users a new means to control their own pleasure and to govern
themselves and provide medical and drug treatment professionals another
tool for both voluntary and mandated (or coerced) treatment.
Vrecko (2010b) has suggested that psychopharmaceuticals, like naltrex-
one, are ‘civilizing technologies’ that focus explicitly on reducing proble-
matic cravings and primitive desires rather than on the governing of wills.
As such, he argues they ‘‘may represent a shift away from the explicit
ambitions of disciplining the addicted subject into a responsible and
autonomous individual’’ (2010b, p. 48). However, for the individuals in my
sample, treatment went beyond restrictive control of cravings to proscriptive
achievement of a very particular kind of personhood, of being ‘‘extra
normal.’’ As the discussion below illustrates, forces far beyond and perhaps
We Haven’t Sliced Open Anyone’s Brain Yet 163

more influential than craving–reducing medications are at play in reshaping

the subjectivity and governance of individuals being treated for addiction.

RATIONALITY: THE PREFRONTAL CORTEX AND

OPIOID INDUCED BRAIN INJURY

Although the control of cravings through the modulation of the limbic

system has received the most scholarly attention (Keane & Hamill, 2010),
addiction neuroscience also implicates conceptions of rationality. The brain
has long been seen as the center of rationality (Vidal, 2009), and addiction
neuroscience reinforces this view. Dackis & O’Brien, for example, describe
the prefrontal cortex as the ‘‘seat of executive function in the brain [y]
involved in decision-making, risk/reward assessment, impulse control and
perseverance’’ (2005, pp.1432–1433). This is the area of the brain believed to
enable individuals to act rationally, according to plan, and to prioritize their
actions on the basis of their social and emotional consequences. According
to addiction neuroscientists, the repeated activation and disregulation of the
endogenous reward system adversely affects the prefrontal cortex (Koob &
Simon, 2009; NIDA, undated). According to neuroscientists Licata and
Renshaw, ‘‘current and former opiate abusers tend to display persistent
neurocognitive deficits that may result from opiate-induced brain injury’’
(2010, p. 7). Drug-using behavior is somatized and embodied: ‘‘the cycle of
addiction becomes etched in the midbrain and frontal structures’’ (Dackis &
O’Brien, 2005, p. 1432). The addict’s brain is not just hijacked: drugs
literally damage the brain and diminish mental and motor functioning
(NIDA, undated).
The identification of addiction with damage to specific brain structures
marks an important turning point in the neuroscientific construction of
addiction. Earlier studies that focused on the dopamine system failed to
explain why some people use drugs occasionally and others become
‘addicted’. Research now focuses on locating ‘‘the neuroadaptive mechan-
isms [y] that mediate the transition from occasional controlled drug use
and the loss of behavioral control over drug-seeking and drug-taking that
defines chronic addiction’’ (Koob & Simon, 2009, p. 116). Rather than
relying on self-reported behavior, neuroscience offers the promise that
addiction can now be diagnosed by looking at how chronic use has changed
the brain.
This strand of research is a perfect companion to that on the limbic
system and the management of pleasure. On the one hand, addicts are
164 JULIE NETHERLAND

portrayed as uncontrollably pursuing pleasure; their hijacked brains make

them compulsively seek drugs to recreate the pleasurable sensations of early
use. On the other hand, drug use also impacts the regions of rationality and
control, diminishing users’ ability to reign in impulsive behavior; pleasure
seeking is unchecked due to a lack of capacity to make rational decisions.
Thus, behavioral traits are reframed as brain problems:
[F]unctional and structural abnormalities in the prefrontal cortex might therefore
contribute to clinical characteristics of addicted patients (such as poor impulse control,
lack of resolve, and faulty decision-making) that are viewed prejudicially by the general
public. (Dackis & O’Brien, 2005, p. 1433)

While people being treated with buprenorphine did not express a

neuroscientific understanding of drugs damaging their prefrontal cortex
and executive control functions, some participants in the BHIVES study did
feel that drugs damaged their brains and their ability to think rationally.
One participant described the ways in which drugs had led her to make
seemingly irrational decisions:
My mind, I have the compulsion under the influence of drugs. I don’t have rational
thinking because I go against my better judgment [y] It’s just a compulsion to get more
drugs like it’s going to make it better. [y] My demands are erratic; you know, I just
don’t understand myself. So I try to stop; but it just, it won’t stop. (Ms. J)

For her and others, drugs caused them to behave ‘‘irrationally’’ (Ms. J, Ms.
D, Mr. G), that is, to continue to use drugs despite harmful consequences.
Many people described how buprenorphine restored ‘‘clear thinking’’ (Mr. A,
Ms. G, Mr. H, Ms. P, Mr. W) and so, with reason rebalanced, allowed them to
return to ‘normal.’ For instance, one noted: ‘‘bupe [buprenorphine] gives your
brain a chance to repair’’ (Mr. Z). Another, describing with first experience on
the medication, said:
I woke up the next morning feeling like a, a normal human being, instead of getting up,
running out the door, looking for a bag [of heroin], I got up and, and, and took my time,
get up and do like normal people do in the morning, shower, eat breakfast, and sit
around and watch the news. (Mr. C)

Buprenorphine allowed this man to take care of himself and, rather than
being forced out of the house by the urge (and likely the physical need) for
heroin, he was able to do ‘normal’ things that suggest both rationality and
order. Another participant said:
[T]he Suboxone [the brand name for buprenorphine] it’s helped me a lot [y] I mean, it
makes me want to go, you know, go to school. ‘Cause my head is getting clearer, you
know, about life actually.’ (Mr. A)
We Haven’t Sliced Open Anyone’s Brain Yet 165

Both men quoted above attribute the medication with restoring their
feelings of normality, clear thinking, and/or the desire to change their lives.
Overcoming addiction for these participants means the restoration of
rational thinking, which is tied to notions of citizenship. As one participant
noted, ‘‘on [buprenorphine], I am John Q. Citizen’’ (Mr. J). Thus, rational
thinking, like the blocking of pleasure and the pursuit of normality, is
connected to being able to care for oneself and a return to productive
citizenship.
There are noteworthy parallels here with Fullagar’s (2009) study of
women taking antidepressants. Fullagar (2009) found that medication
helped many women feel that they were redressing a neurochemical
deficiency in order to reach a functional norm. In the case of addiction,
the establishment and pursuit of this kind of norm is based on defining a
rational, addiction-free individual who stands in contrast to an irrational,
drug-using individual. This dichotomy – false though it might be – has been
around for decades (Gomart, 2004; O’Malley & Valverde, 2004). Addiction
neuroscience holds out the promise that the line between the rational,
addiction-free subject and the irrational, addicted subject can at last be
materialized and located in the brain and depicted through imagery.
Moreover, through treatments like buprenorphine, clear thinking and
rationality can be restored, allowing the activities that make up ‘normal’ life
to resume. Normality becomes a project, part of the work of continually
monitoring and managing one’s self (Rose, 2009). Rationality and self-
control, like the control of pleasure, are vital to the project of returning to
normal and a precondition of self-governance and the exercise of liberal
autonomy (Acker, 2010; Campbell, 2010; Valverde, 1997). However, as the
discussion below suggests, individuals go beyond understandings of
neurochemical deficiency in explaining their addiction and beyond the
ingestion of a pharmaceutical in their quest to restore rationality and
achieve normality.

NEUROPLASTICITY: THE NEURAL

CONSEQUENCES OF ENVIRONMENTAL RISK
Efforts by addiction neuroscientists to locate the line between rational,
controlled drug use and addiction in specific regions of the brain suggest a
form of biological reductionism in which a complex social problem is
reduced to a brain abnormality. However, Pickersgill (2009) warns against
166 JULIE NETHERLAND

portraying neuroscience as simple reductionism, and Pitts-Taylor suggests

that the neuroscientific notion of plasticity ‘‘appears to challenge biological
reductionism by providing room for the environment in brain development
and function’’ (2010, p. 636). Neuroplasticity refers to the brain’s capacity to
reorganize itself in response to experience or injury (Kolb & Whishaw,
1998). Neuroscientific addiction research presents a complicated and
sometimes contradictory picture of the interplay between environmental,
psychological, and biological factors. For example, in a review article on
addiction neurobiology, Chou and Narasimhan (2005) claim that addiction
is influenced by the drug, the user’s personality, peers, and the environment;
one paragraph later they assert: ‘‘exposure to drugs causes plasticity in the
neural circuits related to reward and motivation, supporting the idea that
addiction is a biological disease. Plasticity results from drug use and drug
abuse’’ (2005, p. 1427). Thus, in this view, addiction has external influences
but remains fundamentally a biological disease.
Ambiguity over the role of environmental factors within addiction
neuroscience could offer new opportunities for researchers to address the
social world, but not much evidence suggests they have. In fact, scholars
have noted the failure of addiction neuroscience to explain either social
factors (Campbell, 2010) or the variations in the prevalence of drug use
between populations (Acker, 2010). In general, neuroscientific literature on
addiction seems to construe the role of environmental influences quite
narrowly, and discussions of plasticity focus more on the role that drugs,
rather than environmental factors, play in reshaping the brain. One
important exception is Volkow and Li, explaining the ‘‘neural consequences
of environmental risk’’:

Low socioeconomic class and poor parental support are two other factors [along with
drug availability] that are consistently associated with a propensity to self-administer
drugs, and stress might be a common feature of these environmental factors [yT]here is
evidence that corticotropin-releasing factor (CRF) might play a linking role through its
effects on the mesocorticolimbic dopamine system and the hypothalamic pituitary-
adrenal axis. [y] If we understand the neurobiological consequences underlying the
adverse environmental factors that increase the risk for drug use and addiction, we will
be able to develop interventions to counteract these changes. (2005, p. 1436)

Even here, environmental influences are understood only in the context of

how the stress they induce impacts the dopamine system. Volkow and Li
(2005) go on to suggest that the future interventions may be medications
that act synergistically with behavioral therapies.
We Haven’t Sliced Open Anyone’s Brain Yet 167

Genetic susceptibility to addiction, an old but widely used paradigm

(Peele, 1984), also complicates the picture of addiction and brain plasticity.
For Volkow and Li, both genes and environment can cause neurological
vulnerability to addiction:
It is estimated that 40–60% of the vulnerability to addiction can be attributed to genetic
factors [y] However, addiction-prone or addiction-resistant phenotypes may also reflect
sensitivity to reinforcing stressors and alternative reinforcers in an individual’s
environment. (2005, p. 1479)

This suggests that no one can really escape being ‘at risk’ for addiction;
even if you are not genetically susceptible, environmental factors (through
the mediator of stress) can affect your dopamine system and your
propensity to use drugs. Baart (2010) notes a similar trend in psychiatric
genomics in which genetic knowledge is linking up to epidemiology on risk
and an emphasis on prevention. In the case of addiction neuroscience,
plasticity means both that drugs can damage your brain and that anyone at
anytime could have brain changes that make him or her susceptible to
slipping from occasional, controlled use to full-blown addiction. Also
implicit is the idea that the damage of drugs may be reversible (though the
literature is equivocal on this point) and, therefore, that addicts have the
opportunity and responsibility to repair their brains.
Despite the emphasis on addiction as biological disease to be cured by
medication, even the modest acknowledgement of plasticity and factors
beyond neurobiology begins to erode the lines between the mind as ‘hard-
wired’ versus shaped by the social environment (Pickersgill, 2009 and
Pitts-Taylor, 2010). In the process, the ontology of conditions, like addiction,
with multiple influences are ‘‘rendered less certain and more challenging to
elucidate’’ (Pickersgill, 2009, p. 54).
People taking buprenorphine overwhelmingly attributed their drug use
and recovery to multiple influences (largely external), despite being treated
under a neurobiological framework within a medical setting. For instance,
they repeatedly referenced the need for help with their employment,
housing, mental health, and family problems in order to overcome their
addiction. Even those who felt that buprenorphine was effective made clear
that their problems with addiction were linked to their social circumstances.
As one participant put it:
I don’t believe that sobering somebody up solves the problem. It’s much, much vaster
and deeper than that. [y] You can’t just give somebody Suboxone and then leave them
alone. (Mr. R)
168 JULIE NETHERLAND

Another noted: ‘‘I have other problems besides heroin too that I don’t
think they [medical providers] are really equipped to address [y] So, it’s
harder than heroin’’ (Ms. P.). By acknowledging the influence of external
factors, participants are implicitly rejecting the reductionism inherent in
some of the neuroscientific literature even though their treatment was
framed in largely biological terms.
Brain plasticity has the potential to open up a new (or return to an old)
discourse around how to ameliorate the problems of drugs by addressing the
political and economic forces underlying the kinds of problems that
participants in the BHIVES study cited as affecting their drug use:
homelessness, lack of education, lack of opportunity, poverty, and so on.
However, as Pitts-Taylor points out, recognizing the role of other factors in
‘brain diseases’ does not necessarily undermine the ‘‘neoliberal ethic of
personal self-care and responsibility’’ (2010, p. 5).
In fact, the acknowledgment of external factors in fostering drug use or
relapse appears to increase the demands on the drug user and to broaden the
scope of activities that drug courts and treatment programs monitor. For
example, in order for participants to ‘graduate’ and avoid incarceration,
some drug courts now require not only abstinence from drugs but also
getting a job, obtaining a high-school diploma, reuniting with family
members, and volunteering in the community (Tiger, 2011). As the
discussion below suggests, even though buprenorphine ‘patients’ clearly
understand the impact of external factors on their drug use, they still hold
themselves (and are held by others to be) primarily responsible for
addressing both the neurological and environmental contributors to their
‘disease.’

VOLITION: CHARACTER FLAW OR BONA FIDE

BRAIN DISEASE?

While researchers do not generally use addiction to argue for political

changes in the social environment, many do have an explicit political
project. Rather than isolate themselves behind a wall of scientific objectivity
and neutrality, several prominent addiction researchers have used the brain
disease model to argue for changes in both public perception and policy.
Specifically, a number of addiction neuroscience researchers appear to be
reframing addiction as a brain disease for the explicit purpose of
destigmatizing and decriminalizing drug use and bringing it more fully
We Haven’t Sliced Open Anyone’s Brain Yet 169

under the purview of medicine, rather than the criminal justice system.
Dackis and O’Brien, for instance, claim that neuroimaging will:
substantiate the biological basis of addiction and [y] ultimately erode entrenched
societal attitudes that prevent addiction from being evaluated, treated, and insured as a
medical disorder. (2005, p. 1431)

In their view, neuroscience will eventually end discrimination based on

criminalization of addiction (ibid.). By highlighting and disseminating
‘‘select advances in addiction research,’’ scientists can and should reverse the
public’s ‘‘misconceptions’’ and ‘‘facilitate changes in policy’’ (Dackis &
O’Brien, 2005, p. 1431). Neuroscience researchers believe they can under-
mine the persistent idea that addiction is ‘‘a character flaw rather than a
bona fide brain disease’’ (Chou & Narasimhan, 2005, p. 1427). Thus, such
researchers believe that addiction neuroscience can lead to the end of stigma
and criminalization.
At stake for the researchers is nothing less than the definition and source
of volition and free will. Their argument hinges on the concept that
addiction undermines volition because, if addicts’ behavior is involuntary,
they cannot be culpable for their ‘disease’. Volkow and Li assert:
[D]espite these advances in understanding the neuroplastic changes to drugs and alcohol,
addicted individuals continue to be stigmatized by the pernicious but enduring belief that
their affliction stems from voluntary behavior. The loss of behavioral control in the
addicted individual should spur a renewed discussion of what constitutes volition. (2005,
p. 1436)

Tension between medical- and character-based or behaviorally based

paradigms of pathology is not new to addiction (Campbell, 2010; Court-
wright, 2010). Addiction neuroscience’s contribution is its claim to have
pinpointed a biological basis for the loss of volition and to have located it in
the addict’s brain. Historically, there has been confusion whether the
pathology is the behavior or whether the pathology causes the behavior
(Pickersgill, 2009). The neuroscience of addiction purports to have solved
that dilemma by isolating the brain mechanisms that cause the undesirable
behavior – compulsive use of drugs or alcohol. The direction of causality
remains confused, however, since the brain damage that causes the loss of
volition still begins with voluntary behavior. Neuroscientists link questions
of volition directly to a political project of reducing blame and
destigmatizing addiction, but the effectiveness of these efforts has been
questioned by social scientists and historians of addiction (Campbell, 2010;
Courtwright, 2010; Keane, 2010) and is challenged by the experiences of
those being treated with buprenorphine.
170 JULIE NETHERLAND

In striking contrast to the neuroscientists who are focused on locating the

loss of volition in the brain and thereby de-emphasizing the role of choice,
the BHIVES participants held on tenaciously to their agency and volition.
Even those who credited buprenorphine with blocking their cravings for
heroin felt that will power still played an important role in not using drugs:
I didn’t even get cravings, you know. I guess it was also mind over matter thing because I
was determined not to go back to this stuff [y] so I was just determined to stop using the
drugs. (Mr. W.)

Buprenorphine blocked the cravings, but sheer determination stopped the

drug use.
Many participants were ambivalent about fully embracing a medical
model of addiction, revealing a persistent hold on the idea that they bore
some responsibility for overcoming their addiction. Another man explained:
I was able at times to look at bupe as a being a medical thing like I was treating my
diabetes or my HIV [y But] even the idea of taking bupe on a long term basis is a
struggle because I am looking at how it impacts my recovery, whether it’s – I am using it
as a crutch. (Mr. R)

This man, like several others in the study, drew on multiple models of
addiction to create hybrid understandings that included medical, behavioral,
and moral elements (Vrecko, 2010b) and that preserved a kernel of agency
over their ‘disease’.
Participants also exercised agency in the ways they used buprenorphine.
Rather than accepting that buprenorphine is a medication, like insulin that
should be taken for life (a common refrain in the scientific literature), many
participants used it sporadically or planned to ‘‘wean themselves off it.’’
Several described going on and off buprenorphine, sometimes to take a
‘treatment vacation’ (i.e., to use drugs) and other times because they simply
did not like the idea of being dependent on a medication. In this, they are
not unlike diabetics who, though prescribed insulin, work to control their
disease through the exercise of will (e.g., by dieting). These individuals
taking buprenorphine were not ready to fully cede control of their bodies or
their brains to medicine, at least not indefinitely:
I don’t plan on being on it the rest of my life either. I want to learn how to live on my
own. [y] I see it as a crutch and instead of looking at it as it being a, a medical issue, a
mental illness, to me it’s a weakness. It’s a moral weakness you know that you can’t
handle it. (Mr. D)

Not surprisingly, this individual, who saw buprenorphine as a crutch, also

viewed addiction as a moral failing. Typically, participants had a blended
view of addiction, sometimes talking about it as a disease and other times
We Haven’t Sliced Open Anyone’s Brain Yet 171

talking about it as problem of will power or a failure of character.

Buprenorphine shaped their experience of addiction and, as Vrecko (2010b)
suggests, offered new possibilities for self-understanding and action.
However, these data also suggest that these transformations have limits.
Patients adapted neuroscientific understandings of addiction medication in
ways that reinscribed the role of will power in achieving abstinence and in
shaping a self characterized by discipline, responsibility, and autonomy.
Meleo-Erwin (2010), in her work on weight loss surgery notes that even
when people have accepted biomedical labels and interventions, they often
remain ambivalent and interpret biomedical discourse through their own
(albeit largely normative) frameworks. Among the buprenorphine patients
in my sample, neuroscientific concepts competed and blended with other
ideas about addiction, suggesting individuals draw upon an array of
culturally resonant frameworks – neuroscience being just one – to
understand themselves (Pickersgill et al., 2011).
On the one hand, psychopharmaceutical fixes to neurochemical deficien-
cies, like buprenorphine, promise to restore autonomy by restoring the brain
or at least freeing it from compulsive cravings. On the other, as the
participants in this study illustrate, such treatments undermine autonomy by
requiring acceptance that you have a disease beyond your control, instilling
physical dependence on a medication, and placing responsibility for
overcoming the addiction in the hands of someone or something else. For
the individuals here, curing addiction was about more than being free from
cravings or even being free from illicit drugs; it was also about being
‘‘normal’’ and about being autonomous – including autonomy from
buprenorphine. Ironically, the very medication that helped restore their
autonomy was also seen by some as undermining it.
While the project of neuroscientists appears to be relieving drug users of
the stigma and blame associated with addiction, such rhetoric can also be
used to justify the ‘‘suspension of their personal autonomy, installing an
imperative that they be governed by others’’ (Brook & Stringer, 2005,
p. 319). If drug users cannot control their behavior, they have a ‘‘defect
of the will’’ (Bull, 2008, p. 154). They must, it seems, be controlled by
someone else.

CONCLUSION

This analysis suggests that the neuroscientific paradigm raises, but does not
resolve, important questions about pleasure, rationality, volition, and the
role of external factors in influencing the etiology and treatment of
172 JULIE NETHERLAND

addiction. This chapter has expanded on previous scholarship on

neuroscientific constructions of addiction by showing how these ideas are
tempered by the lived experiences of those being treated under a
neuroscientific model. It also suggests that while medication shapes the
experience of those being treated for addiction, so too do many other forces,
including social circumstances, moral frameworks, the drive for autonomy,
and the quest to be normal.
Both the neuroscientific and ‘patient’ discourses about addiction focus on
the control of pleasure, the restoration of rationality, the role of external
factors, and the ambivalent status of the addict’s volition. Though they
differ in important ways, both reinforce an individualization of the problem
and a particular form of governance. Vidal (2009) notes that the cerebral
subject, such as that born out of addiction neuroscience, makes historical
and conceptual sense in a society rife with possessive individualism – where
the individual is ‘‘proprietor of his own person and capacities, owing
nothing to society for them’’ (Macpherson as quoted in Vidal, 2009, p. 9).
The idea that addiction is a defect in the brain (whether caused by genetics,
behavior, and/or environment) increases, rather than diminishes, the
responsibilities of individuals. They must first of all prevent addiction and
be vigilant about inducing too much pleasure (thereby disrupting the brain’s
delicate neurocircuitry and/or causing brain damage). Second, they must
also ‘treat’ any defects that do arise. Last, they must achieve and maintain a
‘normal’ and ‘healthy’ brain. The quest to be ‘normal’ among those in this
study went beyond controlling cravings or correcting a neurochemical
deficiency by taking a pill; rather, it encompassed a way of life characterized
by autonomous, responsible citizenship often achieved through will power
and medication.
With important exceptions, ‘‘doctors do not force diagnostic labels onto
resistant individuals’’ (Rose, 2007, p. 702). As those taking buprenorphine
suggest, many have willingly taken on both the label of ‘addict,’ as well as
the project of restoring normality through a combination of psychophar-
maceuticals, will power, and behavior. Neuroscientists and those being
treated for addiction share the same treatment goal: the constitution of a
rational, responsible, ‘normal’ and productive citizen. Meeting this ideal,
however, remains largely the responsibility of the individual addict; they are
expected to overcome their brain disease – not with the help of the state,
their family, or community, but with the aid of the biomedical industrial
complex (Clarke et al., 2003; Vrecko, 2009). Today, the hope is to replace
the drug-using subject (characterized by irrationality and uncontrolled
pleasure) with a medicine-taking subject (characterized by rationality and
We Haven’t Sliced Open Anyone’s Brain Yet 173

productivity). Will power, with the support of a psychopharmaceutical, is

the new road to recovery.
Neuroscientific addiction discourse is not just about addicts. It also
frames the governance of ‘healthy’ populations. Illness is defined in relation
to a norm, and, in the case of addiction, one which is explicitly tied to ‘good’
behavior. Whatever one thinks of this normative view, its material and
psychic rewards are enormous. Addiction, and our responses to it, causes
very real suffering and harm. Many addicts are profoundly marked by
stigma; others fall outside the limits of intelligibility altogether and have
little access to the protection and benefits of our economic, political, and
social institutions (Butler, 2004). Interviews with patients suggest that the
quest for normality offers new opportunities for personhood and freedom –
a chance to avoid imprisonment, to reconnect with family, to care for their
health, and to regain some measure of economic security and autonomy.
This is not to suggest that people in treatment are operating without
constraints. Rather, it is to remind us that we are all always operating under
a system of constraints and that some constraints, like buprenorphine, offer
new opportunities for autonomy (Gomart, 2004). When drug users come
under the constraints of a neuroscientific treatment, like buprenorphine,
they trade one drug/medication for another and one set of restrictions and
opportunities for another. In Butler’s words, ‘‘one purchases one sort of
freedom only by giving up another’’ (2004, p. 91). The issue is not one of
freedom versus constraint but rather an issue of what kind of freedom is
possible and what kind of constraint is tolerable within a neuroscientific
understanding of addiction.
However, the forms of self-regulation that psychopharmaceuticals like
buprenorphine make possible do not necessarily diminish the force of more
punitive forms of external control (Tiger, 2011), and we should be cautious
about assuming that this latest push toward the medicalization of addiction
will replace more overtly punitive responses. In their study of methadone,
Fraser and Valentine note that we have established a system with ‘‘self-
regulation for some, brute repression for others’’ (2008, p. 60). Those who
fail to govern themselves may be incarcerated or engage with ‘‘medicolegal
hybrids,’’ like the use of naltrexone in drunk driving courts (Vrecko, 2009).
Rather than making drug users blameless, neuroscience has provided tools
(speculative and theoretical though they remain) to identify ‘addicts’ and
hold them accountable for correcting their own behavior through the use of
neuroscientific interventions. Rose, looking at court decisions, points out
that neuroscience makes authorities believe that they can be preemptive in
protecting public safety by making it possible to ‘‘identify and exclude those
174 JULIE NETHERLAND

who are incorrigibly risky and monstrous – incarceration without reform’’

(2010, p. 88). Moreover, the uncertainty within addiction neuroscience
about the role of genetics, biology, environment, and personality means that
we are all susceptible or at risk, reinforcing the ‘‘emerging logic for the
conduct of conduct – to screen and intervene’’ (Rose, 2010, p. 97). While this
has not yet happened in the case of addiction, one can imagine
neuroscientific arguments that a ‘predisposition’ to addiction or ‘drug-
induced brain damage’ requires not only civilizing and self-governance but
also aggressive intervention and containment. Addiction neuroscience
reveals the dilemmas inherent in contemporary regulatory projects: how
will we manage those who fail to meet the considerable demands of a liberal
society of ‘free’ individuals?

REFERENCES
Abi-Rached, J. M., & Rose, N. (2010). The birth of the neuromolecular gaze. History of the
Human Sciences, 23(1), 11–36.
Acker, C. (2010). How crack found a niche in the American ghetto: The historical epidemiology
of drug-related harm. BioSocieties, 5(1), 70–88.
New York Times. (2006). An Anti-addiction pill? New York Times, June 26. Retrieved from
http://query.nytimes.com/gst/fullpage.html?res¼950CE2D91E31F936A15755C0A9609
C8B63&sec¼health&spon¼&pagewanted¼3. Accessed on August 13, 2010.
Baart, I. (2010). The contingency of psychiatric genomics in a Dutch research consortium.
BioSocieties, 5(2), 256–277.
Beaulieu, A. (2001). Voxels in the brain: Neuroscience, informatics and changing notions of
objectivity. Social Studies of Science, 31(5), 635–680.
Beaulieu, A. (2002). Images are not the (only) truth: Brain mapping, visual knowledge, and
iconoclasm. Science, Technology & Human Values, 27(1), 53–86.
Bergschmidt, V. (2004). Pleasure, power and dangerous substances: Applying Foucault to the
study of ‘heroin dependence’ in Germany. Anthropology & Medicine, 11(1), 59–73.
Bourgois, P. (2000). Disciplining addictions: The bio-politics of methadone and heroin in the
United States. Culture, Medicine and Psychiatry, 24, 165–195.
Brenninkmeijer, J. (2010). Taking care of one’s brain: How manipulating the brain changes
people’s selves. History of the Human Sciences, 23(1), 107–126.
Brook, H., & Stringer, R. (2005). Users, using, used: A beginner’s guide to deconstructing drugs
discourse. International Journal of Drug Policy, 16(5), 316–325.
Bull, M. (2008). Governing the heroin trade: From treaties to treatment. Aldershot, UK: Ashgate.
Butler, J. (2004). Undoing gender. New York, NY: Routledge.
Campbell, N. (2010). Toward a critical neuroscience of ‘addiction’. BioSocieties, 5(1), 89–104.
Chou, I., & Narasimhan, K. (2005). Neurobiology of addiction. Nature Neuroscience, 8(11),
1427.
Clarke, A., et al. (2003). Biomedicalization: Technoscientific transformations of health, illness
and U.S. biomedicine. American Sociological Review, 68, 161–194.
We Haven’t Sliced Open Anyone’s Brain Yet 175

Conrad, P., & Schneider, J. (1992). Deviance and medicalization: From badness to sickness.
Philadelphia, PA: Temple University Press.
Courtwright, D. (2010). BioSocieties, 5(1), 137–147.
Dackis, C., & O’Brien, C. (2005). Neurobiology of addiction: Treatment and public policy
ramifications. Nature Neuroscience, 8(11), 1431–1436.
Dumit, J. (2004). Picturing personhood: Brain scans and biomedical identity. Princeton, NJ:
Princeton University Press.
Dunbar, D., Kushner, H., & Vrecko, S. (2010). Drugs, addiction and society. BioSocieties,
5(1), 2–7.
Fiellin, D. A., Pantalon, M. V., et al. (2002). Treatment of heroin dependence with
buprenorphine in primary care. American Journal of Drug Alcohol Abuse, 28(2), 231–241.
Frascella, J., Potenza, M., Brown, L., & Childress, A. (2010). Shared brain vulnerabilities open
the way for nonsubstance addictions: Carving addiction at a new joint? Annals of the
New York Academy of Sciences, 1187, 294–315.
Fraser, S. G., & Valentine, K. (2008). Substance and substitution: Methadone subjects in liberal
societies. Basingstoke, UK: Palgrave Macmillan.
Fullagar, S. (2009). Negotiating the neurochemical self: Anti-depressant consumption in
women’s recovery from depression. Health, 13(4), 389–406.
Gomart, E. (2004). Surprised by methadone: In praise of drug substitution treatment in a
French clinic. Body & Society, 10(1–2), 85–110.
Hanson, G. (2003). Opening the door to mainstream medical treatment of drug addiction.
NIDA Notes, 17(5). Retrieved from http://archives.drugabuse.gov/NIDA_notes/
NNvol17N5/DirRepVol17N5.html. Accessed on September 11, 2010.
Harwood, H. J., & Myers, T. G. (2004). New treatments for addiction: Behavioral, ethical, legal,
and social questions. Washington, DC: National Academies Press.
Jaffe, J., & O’Keeffe, C. (2003). From morphine clinics to buprenorphine: Regulating opioid
agonist treatment of addiction in the United States. Drug Alcohol Depend, 70(2 Suppl),
S3–S11.
Joyce, K. (2005). Appealing images: Magnetic resonance imaging and the production of
authoritative knowledge. Social Studies of Science, 35, 437–462.
Keane, H., & Hamill, K. (2010). Variations in addiction: The molecular and the molar in
neuroscience and pain medicine. BioSocieties, 5(1), 52–69.
Kolb, B., & Whishaw, I. (1998). Brain plasticity and behavior. Annual Review of Psychology, 49,
43–64.
Koob, G. F., & Simon, E. J. (2009). The neurobiology of addiction: Where we have been and
where we are going. Journal of Drug Issues, 39(1), 115–132.
Licata, S. C., & Renshaw, P. F. (2010). Neurochemistry of drug action. Annals of the New York
Academy of Sciences, 1187, 148–171.
Logothetis, N. (2008). What we can do and what we cannot do with fMRI. Nature, 453(12),
869–878.
Mark, T., Kassed, C., Vandivort-Warren, R., Levit, K., & Kranzler, H. (2009). Alcohol and
opioid dependence medications: Prescription trends, overall and by physician specialty.
Drug and alcohol dependence, 99(1–3), 345–349.
May, C. (2001). Pathology, identity and the social construction of alcohol dependence.
Sociology, 35(2), 385–401.
Meleo-Erwin, Z. (2010). ‘A beautiful show of strength’: Weight loss and the fat activist self.
Health, Epub ahead of print on December 22, 2010, doi:10.1177/1363459310361601
176 JULIE NETHERLAND

Merrill, J. (2002). Policy progress for physician treatment of opiate addiction. Journal of
General Internal Medicine, 17(5), 361–368.
Mol, A. (2002). The body multiple: Ontology in medical practice. Durham, NC: Duke University
Press.
National Advisory Committee’s Subcommittee on Buprenorphine. (1999). Using buprenorphine
for office-based treatment of opiate addiction: Recommendations to CSAT. Rockville,
MD: SAMHSA.
National Association of State Alcohol and Drug Abuse Directors. (2006). Methadone maintenance
and the criminal justice system. April Issue Brief. Washington DC: NASADAD.
NIDA, undated). Addiction science: From molecules to managed care. Retrieved from http://
www.nida.nih.gov/pubs/teaching/Teaching6/Teaching.html. Accessed on September 17,
2010.
O’Malley, P., & Valverde, M. (2004). Pleasure, freedom and drugs: The uses of ‘pleasure’ in
liberal governance of drug and alcohol consumption. Sociology, 38(1), 25–42.
Peele, S. (1984). The implications and limitations of genetic models of alcoholism and other
addictions. Journal of Studies on Alcohol, 47, 63–73.
Pickersgill, M. (2009). Between soma and society: Neuroscience and the ontology of
psychopathy. BioSocieties, 4(1), 45–60.
Pickersgill, M., Cunningham-Burley, S., & Martin, P. (2011). Constituting neurologic subjects:
Neuroscience, subjectivity, and the mundane significance of the brain. Subjectivity, 4(3),
346–365.
Pitts-Taylor, V. (2010). The plastic brain: Neoliberalism and the neuronal self. Health, 14(6),
635–652.
Reinarman, C. (2007). Policing pleasure. Food, drugs, and the politics of ingestion.
Gastronomica (Summer), 53–61.
Rose, N. (2003). Neurochemical selves. Society, 41(1), 46–59.
Rose, N. (2007). Beyond medicalisation. Lancet, 369(9562), 700–702.
Rose, N. (2009). Normality and pathology in a biomedical age. Sociological Review, 57, 66–83.
Rose, N. (2010). ‘Screen and intervene’: Governing risky brains. History of the Human Sciences,
23(1), 79–105.
Substance Abuse and Mental Health Services Administration, Office of Applied Studies. (2008).
National Survey of Substance Abuse Treatment Services (N-SSATS): 2007. Data on
Substance Abuse Treatment Facilities. OAS Series no. S-44, DHHS Publication no.
(SMA) 08-4343, Rockville, MD.
Anonymous. (2005). Taking addiction research into the clinic. Nature Neuroscience, 8(11), 1413.
Tiger, R. (2011). Drug courts and the logic of coerced treatment. Sociological Forum, 26(1).
Valverde, M. (1997). Slavery from within: The invention of alcoholism and the question of free
will. Social History, 22(3), 251–268.
Valverde, M. (1998). Diseases of the will: Alcohol and the dilemmas of freedom. New York, NY:
Cambridge University Press.
van Ree, J. M., Gerrits, M. A., & Vanderschuren, L. J. (1999). Opioids, reward and addiction:
An encounter of biology, psychology, and medicine. Pharmacological reviews, 51(2),
341–396.
Vidal, F. (2009). Brainhood, anthropological figure of modernity. History of the Human
Sciences, 22(1), 5–36.
Volkow, N., & Li, T. K. (2005). The neuroscience of addiction. Nature Neuroscience, 8(11),
1429–1430.
We Haven’t Sliced Open Anyone’s Brain Yet 177

Vrecko, S. (2006). Folk neurology and remaking of identity. Molecular Interventions, 6,

300–303.
Vrecko, S. (2009). Therapeutic justice in drug courts: Crime, punishment and societies of
control. Science as Culture, 18(2), 217–232.
Vrecko, S. (2010). Neuroscience, power and culture: An introduction. History of the Human
Sciences, 23(1), 1–10.
Vrecko, S. (2010b). ‘Civilizing technologies’ and the control of deviance. BioSocieties, 5(1),
36–51.
ARE WE RECEPTIVE TO
NATURALISTIC EXPLANATORY
MODELS OF OUR DISEASE
EXPERIENCE? APPLICATIONS
OF DEEP BRAIN STIMULATION
TO OBSESSIVE COMPULSIVE
DISORDERS AND PARKINSON’S
DISEASE

Baptiste Moutaud

ABSTRACT

There is significant research describing how the development of

neuroscience has affected the definition and treatment of neurological
and psychiatric disorders, as well as brought about changes in research
and care practices. Little is still known, however, about the ways in which
these changes come about and on how they affect individuals’ – in
particular, patients’ – experiences. In this chapter, I describe the changes
imposed by neuroscientific practices not only on patients’ experience of
their neurological or psychiatric disorder, but also on how they define

Sociological Reflections on the Neurosciences

Advances in Medical Sociology, Volume 13, 179–202
Copyright r 2011 by Emerald Group Publishing Limited
All rights of reproduction in any form reserved
ISSN: 1057-6290/doi:10.1108/S1057-6290(2011)0000013012
179
180 BAPTISTE MOUTAUD

themselves. In so doing, I draw on ethnographic research conducted

among a neuroscientific team of a French hospital which has coordinated
a research trial for the application of an experimental neurosurgical
treatment – deep brain stimulation (DBS) – to patients suffering from
obsessive compulsive disorder who are resistant to conventional treat-
ments. This technology has been used since 1986 for treating various
neurological and psychiatric disorders. My objective is to describe how the
models of pathology conveyed by DBS and the experiences of patients
suffering from a neurological or psychiatric disorder interact to constitute
a form of personhood. I argue that, in certain situations, some of the
patients attribute more significance to cerebrally orientated – or
naturalistic – explanatory models and give a new value to their subjective
experience: they ‘cerebralize’ and find inside the brain and its
(dys)functions – or through an intervention on it – the source or the
solution of a plurality of personal situations.

Keywords: Deep brain stimulation; medical anthropology; medical

experimentation; neuroscience; obsessive compulsive disorder;
Parkinson’s disease

INTRODUCTION

There is significant research describing how the development of neuroscience

has affected the definition and treatment of neurological and psychiatric
disorders, as well as brought about changes in research and care practices
(Castel, 2008; Dumit, 2003b; Ehrenberg, 2009; Hacking, 1995; Lloyd, 2008;
Pickersgill, 2009; Young, 1995). Little is still known, however, about the ways
in which these changes come about and on how they affect individuals’ – in
particular, patients’ – experiences (Dumit, 2003a; Fein, Chapter 2, this
volume; Moutaud, 2008; Ortega, 2009; Pickersgill, Martin, & Cunningham-
Burley, 2011). Still, neuroscientific practices are underpinned by a philoso-
phical discourse upholding that living human beings can be fully apprehended
through brain mechanisms (Ehrenberg, 2010). This discourse is understood to
have spread widely through Western societies and to support the emergence
of a ‘cerebral subject’: a way for individuals to be in the world, to think of
themselves, and to define their personal identity in terms of their brain and
how it works (Ehrenberg, 2004; Vidal, 2009; see also Rose, 2007, on
‘neurochemical selves’). Although this ‘anthropological figure’ is especially
Applications of DBS to OCD and Parkinson’s Disease 181

apparent in, for instance, the autistic neurodiversity movement (which

defines autism as an atypical cognitive functioning, as a specific human
condition and variation ‘‘that must be equally respected’’: Ortega, 2009: p.
425), how individuals’ identification with their brain is expressed, how their
self or inner nature is materialized, still needs to be clarified.
In this chapter, I describe the changes imposed by neuroscientific practices
not only on patients’ experience of their neurological or psychiatric disorder,
but also on how they define themselves. In doing so, I use as a case-study the
application of an experimental neurosurgical treatment: deep brain
stimulation (DBS). DBS involves the neurosurgical implantation of two
small electrodes in brain structures. Linked to a pulse generator placed in
the chest, they allow modulating brain activity through chronic high-
frequency stimulation. The neurologist can then adapt the stimulation
parameters with an external programmer to obtain the best clinical
improvement. DBS has been used since 1986 for treating various
neurological disorders (Parkinson’s disease, epilepsy, and dystonia) and
psychiatric or neuropsychiatric disorders (depression, obsessive-compulsive
disorder, and Tourette syndrome) (see Perlmutter & Mink, 2006). It is
currently one of the most efficient symptomatic treatments for Parkinson’s
disease (PD), a neurodegenerative disorder characterized by tremor, muscle
rigidity, slowness of movements, loss and poverty of voluntary movements.
Its main pharmacological treatments are Levodopa, dopamine-agonists and
MAO-B inhibitors.
My objective is therefore to describe how the models of pathology
conveyed by DBS and the experiences of patients suffering from a
neurological or psychiatric disorder interact to constitute a form of
personhood. The analysis explores the following questions: How do persons
submitted to this technology for treatment of obsessive compulsive disorder
(OCD) or PD imagine and experience their disease? How are the
explanatory models of the disorders supporting the treatments integrated
by patients and articulated with their care trajectory? How are they
combined with pre-existing models or with those inherent to the care? What
is the logic underpinning their choice or articulation by the patients?
To achieve this, I conducted ethnographic research among the team of the
Clinical Research Center (CRC) of a French hospital from 2004 to 2008
(Moutaud, 2008). This CRC is a neuroscience centre associating researchers
and clinicians devoted to therapeutic experimentation (Moutaud, 2010) and,
more specifically, to the application of DBS to neurological and psychiatric
disorders. The CRC has been implanting PD patients since 1996 and has
coordinated a research trial for the application of this technology to patients
182 BAPTISTE MOUTAUD

suffering from OCD who are resistant to conventional treatments (Mallet

et al., 2008). In the American Psychiatric Association’s (2000) classification
of mental disorders, OCD is characterized by obsessions (intrusive and
anxiety-producing thoughts, such as preoccupations with sexual impulses,
or fear of contamination) and compulsions (repetitive ritualized behavior,
such as repetitive hand washing or hoarding). The patient has to execute
these compulsions to reduce the anxiety induced by the obsessions. The
current treatment is serotonin reuptake inhibitors combined with cognitive
behavioral therapy.
During the research trial, 17 OCD patients have been implanted in France –
3 of which underwent the procedure at the CRC, whom I followed and
interviewed throughout the research period. I will call them Yvan, Melville,
and Laure. I have observed all the clinical and scientific activities linked to
the development of this technology (more than 150 consultations – mainly in
neurology and psychiatry –, patient selection, surgery, team meetings, and
so on). Furthermore, I carried out more than 40 semi-structured interviews
with the CRC staff and clinicians and researchers involved in CRC research
(laboratory technicians, neuro-anatomists, neurologists, neuropsycholo-
gists, neurosurgeons, nurses, psychiatrists, and psychologists). Questions
were asked regarding their individual and collective practice, the develop-
ment of DBS, the patients’ care, and the relations between neurology and
psychiatry, or research and clinic. Last, the field was completed with 22
individual semi-structured interviews with persons suffering from OCD who
do not have been implanted. These interviews focused on their disease
representations and their care trajectories.
First, this chapter describes the PD and OCD patients’ reactions to DBS
effects, and details how the CRC team explained their new state. Second, I
argue that, in certain situations, some of the patients are attributing more
significance to cerebrally orientated – or naturalistic – explanatory models
and give a new value to their subjective experience: they ‘cerebralize’ and
find inside the brain and its (dys)functions, or through an intervention on it,
the source or the solution of a plurality of personal situations.

SOCIAL-ADJUSTMENT PROBLEMS AMONG THE

STIMULATED PATIENTS: AN UNDEFINED ILL-BEING

Even if DBS seemed to be effective in alleviating OCD and PD patients’

symptoms, the CRC team had to struggle with an unexpected situation: some
Applications of DBS to OCD and Parkinson’s Disease 183

stimulated patients were not satisfied or experienced social-adjustment

problems. In this first part, I outline how the CRC team identified and
categorized these cases and what solutions have been provided.

DBS for PD: Complexity in the Clinic

The three situations bellows are excerpts from my fieldwork diary. They
describe three cases of PD patients stimulated I met at the CRC.

SITUATION 1

Elizabeth, a neurologist, shows Catherine, a stimulated PD patient,

into the consultation room. Elizabeth briefly leaves me alone with her
while she settles a problem in the ward. I have a short conversation
with Catherine, who tells me her story. She explains that she was
implanted two years ago and has been stimulated since then. She is here
today because Elizabeth adjusted the stimulation a week ago but ‘‘it’s
not working out.’’ She has ‘‘pains.’’ When she says this she bends over
and screws up her face.
Elizabeth comes back. She adjusts the stimulation parameters. She
explains to Catherine that she is going back to the previous parameters.
Catherine tells her she would like to recover her ‘‘get-up-and-go,’’
describing how she is ‘‘drained all the time. I would like to start from
scratch.’’ She asks for ‘‘medication’’ – no specific drug is mentioned –
and then starts crying. Elizabeth tries to comfort her.
Once the patient is gone, Elizabeth says to me: ‘‘You don’t have to
be a shrink to see that she suffers from hysteria. There’s nothing wrong
with her. Her Parkinson’s is cured.’’

SITUATION 2
I go to see a PD patient who is hospitalized for a checkup. Jules is a
67-year-old man who has been sick for 12 years. He was sent to this
hospital by his physician. ‘‘At first, it was a honeymoon,’’ he tells me,
‘‘and then, after a while, I could no longer drive. Stimulation was
184 BAPTISTE MOUTAUD

proposed. I accepted because I couldn’t stand it anymore. My life was

unbearable, I could no longer go anywhere; someone always had to be
with me.’’1 He was implanted in 2006.
I asked what improvements there had been. ‘‘Speech and movements
are better and there is less medication. I only get 4 or 5 lines [of
prescriptions]. There used to be 40. But there is nothing extraordinary
about it. I had been told extraordinary things, but I’m still dependent.
My neurologist and my family tell me that I’m better than before but I
still can’t move around. I am better neurologically. Before, no one
understood me when I spoke.’’ But he explains that what he would like
is to be able to move around on his own. His neurologist said that he
had too much faith in the procedure.

SITUATION 3

Laurent, a neurologist, has a stimulated PD patient, Michel, who

consults on a very regular basis.
Michel comes in and explains that he has come back because he ‘‘was
blocked’’: ‘‘It’s as if the stimulator had stopped,’’ he says. Laurent is
surprised. The neurostimulator cannot have stopped and started up
again on its own. He examines the patient then checks the
neurostimulator, which is functioning properly. He increases the
stimulation radically while telling Michel: ‘‘3.6 volts, 185 Hertz, and
90 milliseconds.’’ He then explains to him that it has nothing to do with
a blockage: ‘‘It’s a weakness, a generalized fatigue.’’ He reminds him
that at the beginning of stimulation he was well and then, after that,
that he was ‘‘never satisfied,’’ that he had said he ‘‘still had a problem
of rigidity on the right side.’’
At the end of the consultation, Laurent discusses the case with a
neurologist. According to her, ‘‘it’s not just the PD.’’ By this, she
implies that he is not suffering from residual PD motor symptoms that
DBS was not being able to solve completely, but from ‘‘psychological
issues.’’

When I arrived at the CRC, the team was grappling with an unexpected
problem. Some of the implanted and stimulated PD patients were, in the
Applications of DBS to OCD and Parkinson’s Disease 185

words of one neurologist, ‘‘not happy,’’ whereas the clinicians and

researchers were in fact very satisfied with the conclusive DBS results. The
technique had proved to be very effective in treating the motor symptoms of
PD, as per the literature on the subject (see Krack et al., 2003). Clinical
improvements are often spectacular for patients whose disease is advanced
and for whom medication has either stopped being effective, or has brought
about pervasive side effects (such as dyskinesia, characterized by repetitive
involuntary body movements). DBS allows them to recover, to varying
degrees, their ability to control their own motor functions (something that
had been inhibited by the symptoms). Some patients are able to return to
some activity (work, leisure) and to pick up the social relations that the
disease or the stigmatization that comes with it had forced them to give up.
They are also less dependent on their close relations. In addition, they had
reduced the quantities of daily medication radically. The side effects had
therefore disappeared, even though DBS can induce others (such as weight
gain or dysarthria, a speech articulation disorder). Above all, the patients no
longer have the fluctuation problems connected to the start and end of
pharmacology intakes, which can include involuntary movements,
blockages, and slowness of action: the effect of the stimulation is continuous
and stable in the medium term. The literature has in fact observed
considerable improvement for patients in their quality of life (see Diamond &
Jankovic, 2005).
However, for the CRC team, some of the patients’ experiences of
‘improvement’ and of the advantages of stimulation thus did not translate
into their everyday experiences, and their behavior was sometimes
unsettling. This is exemplified in the title of one of its articles:
‘‘Neurosurgery in Parkinson’s disease: the doctor is happy, the patient less
so?’’ (Agid et al., 2006a). These unhappy patients were a minority, never
quantified on account of the absence of strict criteria to characterize them
(rather, they were placed under a default categorization for lack of any other
explanation) and especially of their variability. This is expressed – contrary
to the rest of the team’s literature – through the insertion of several clinical
vignettes in a famous CRC article on these patients (Schüpbach et al., 2006).
They need to report this ill-being, which evaluation scales sometimes
identified but were not able to express in its complexity. All of these cases
illustrated a form of complaint and/or discontent among the patients, most
often apparent during consultation, as shown in the three situations
described earlier. As one neurologist put it: ‘‘They are looking for comfort
during consultation, but they are all right from a motor point of view.’’ In
fact, the CRC neurologists explained that none of the patients wished to
186 BAPTISTE MOUTAUD

stop the stimulation and go back to their former situation. There are also
reports of patients’ divorcing or quitting their job (Agid et al., 2006a;
Schüpbach et al., 2006). For the team, although their motor disability is
attenuated, the patients were not ‘‘socially adjusted’’ and had ‘‘trouble
fitting into their family and professional environment’’ (a neurologist) (see
also Gisquet, 2008). The CRC team needed to define this ill-being.

A ‘‘Body-Mind Rupture’’: Psycho-Pedagogical Explanatory Models

At first, PD patients with social-adjustment problems were integrated into

two of the team’s articles on the behavioral and cognitive problems induced
by DBS or pharmacological treatment among stimulated PD patients
(Houeto et al., 2002, 2006), but later they became the subject of specific
research. This allowed the CRC team to assert that such problems were not
the result of DBS side effects: they argued that clinicians were not dealing
here with hypomanic patients whose family could no longer put up with;
they were not depressed or apathetic because of DBS, nor do they had
behavioral disorders that may explain their problems (pathological
gambling, hypersexuality, etc.), nor even cognitive disorders (see Appleby
et al., 2007). The criteria here were not pathological but what the team
identified as related to ‘‘social adjustment.’’
The CRC categorized these cases and the problems observed in them as
pertaining to the field of ‘‘psycho-pedagogy’’ (as it qualified it): as the team
explained to me or in its articles (Agid et al., 2006a; Schüpbach et al., 2006),
DBS is seen to cause a rupture in the patient’s life, for which he or she (and/
or his/her close relations) is not always prepared and which then is expressed
psychologically by dysfunctions in social relations or by discontent. One of
the CRC psychologists explained: ‘‘They have to be prepared for a new life.’’
Another added: ‘‘They have to be helped in getting used to a new much
better body. There is a lag between the body and the mind.’’ A neurologist:
‘‘They sometimes have problems when they return to social life. Their family
and friends are not ready for the new person, not accustomed to him or her.
It is like getting out of jail. There is an appetite for life.’’ These patients are
therefore not able ‘‘to make the proper adjustment’’: they can have
problems with their spouses, can have lost the sense of their life as it is no
longer connected to fighting the disease, disability, and stigmatization, or
might have to manage a ‘‘new relationship to their body’’ and a ‘‘rebirth’’ (a
psychologist). It is therefore because DBS improves the patient’s sympto-
matic state, radically and suddenly, that the patient is having trouble. The
Applications of DBS to OCD and Parkinson’s Disease 187

title of the team’s leading article on these patients provides a very good
summary of this new state, which is further elaborated by their explanations:
‘‘Neurosurgery in Parkinson’s disease: A distressed mind in a repaired
body?’’ (Schüpbach et al., 2006).
What is most important from a sociological and anthropological point of
view in this explanatory model is the categorization it implies for the
problems. If, for the CRC team, these are not caused by DBS and its effects
on the brain’s functioning, this means they are either psychological, or
adaptive and pedagogical.2 Although this explanatory model partially
appears because of an absence of any (researcher-defined) other, it does
provide sufficient structural reference for initiating a new form of care.
Specifically, the team provided multidisciplinary ‘psycho-pedagogical’ care
(involving all the clinicians) intended to optimize the effectiveness of the
treatment by engaging in a follow-up and support process including
informing on its effects, its limits, and its potentialities. At the same time,
the team continued to seek more ‘solid’ neuroscientific explanations ‘‘at a
neurologic level’’ for ill-being and social maladjustment (Schüpbach et al.,
2006, p. 1815).
The ‘psycho-pedagogical’ field thus cuts across forms of intervention that
are completely distinct from neuroscience and from brain causality and have
no disciplinary specificity: it entails opening a field of action and care
focused on prevention and long-term psychosocial rehabilitation. It
highlights the team’s struggle to define these patients’ problems, in terms
of their origin, the category of patients, or the diversity of events that they
cover. DBS and its effects on cerebral functioning were not, in cases such as
these, therapeutically sufficient.

DBS for OCD: ‘‘I’m Okay, but not Doing very Well’’

The situation I found among OCD patients implanted at the CRC was
basically similar. When at the end of the protocol I asked the three patients I
was following, ‘‘How are you doing?’’ their answers were in the same line as
Melville’s: ‘‘I’m okay, but not doing very well.’’ And yet all three of them
explained that their OCD had practically disappeared. There was nothing
worth noting. Obsessions sometimes turned up, but ‘‘don’t stay’’ (Yvan),
and they could easily get rid of them. For Laure:
It [the obsession] still comes to mind as something I remember and then I say to myself,
‘‘Oh! I don’t think about it anymore!’’ There’s a kind of a shadow of a memory, but
before it was crazy! I don’t fight anymore.
188 BAPTISTE MOUTAUD

As for the compulsions, ‘‘they’re nowhere near what they used to be’’
(Yvan). It is true that there could still be up to an hour of compulsions, but
for these patients this is something of a miracle compared to the 6–10 h a
day spent in this way prior to implantation. So why, then, do these patients
say they are not doing well?
According to the CRC team, there are two reasons. The first applies to
Melville and Yvan: they were depressive. Their OCD had been co-morbid
with deep depression, and the latter was not improved by DBS. A
psychiatrist involved in the research trial even found this surprising: ‘‘We
are used to having medication that acts on a bit of everything, whereas here,
we have very specific and selective action.’’ Except that for these patients,
the new situation is just as difficult and disturbing. Depressive co-morbidity
is extremely frequent with OCD. In this case, depression is not a
consequence of the pathology and its repercussions on the patient’s life
(who would then be depressed because of their condition), but a distinct
pathology. They are suffering from depression in addition to having OCD.
For Melville, this went as far as having had to be repeatedly hospitalized
since the end of the research protocol.
The second reason for the patients’ distress covers Laure’s case: their daily
life had been demolished by the disease, and now, with their OCD
alleviated, they must build a new life on the ruins of the old one. To explain
his malaise, Yvan used blunt language: ‘‘I have a shitty life.’’ When I spoke
with Melville and asked him about the reasons of his current ill-being, he
answered:
I suffer from loneliness, I’m all alone, and then my father died two years ago, and then
my mother has Alzheimer’s disease. She’s in a retirement home but she doesn’t get very
good care, that’s what I’m worried about, so I have to change her [retirement home].
And then I’m having problems with the takeover man [taking over the family company].
All that y I shouldn’t have had to have trouble with the stimulation settings, I shouldn’t
have had to have worries, and then I’m alone, I’m suffering from loneliness, but well, I
sometimes think about getting back together with someone, with a woman.

He did, nonetheless, specify: ‘‘But the OCD is 70% better.’’

As for Yvan, he explained that before the operation he could never
maintain a romantic relationship (which he missed), that the disease had
destroyed his professional career, and that it had kept him from having
friends. Likewise, for Laure, OCD had interfered with her personal and
professional relationships, and with her daily life, and her husband’s and her
daughter’s. She finally had to quit her job and sometimes had to get away
from her home and family. These everyday problems – in relationships, in
the family, in work – all became a constituent part of their disease, which
Applications of DBS to OCD and Parkinson’s Disease 189

was no longer just symptoms and a disorder (be it mental or biological).

They were, confusedly, as much the consequence as the source of an abstract
state of ill-being. Apparent in all the patients’ discourse is the idea that getting
back to ‘‘normal’’ had to include recovering a balance in their daily life.
To address this situation, the CRC offered, here too, multidisciplinary
care including neurological and psychiatric follow-up care as well as meeting
with social workers and psychological follow-up care at hospital day
patients. The set of practices qualified as ‘psychotherapeutic’ follow-up care
by the team, aimed, once the symptoms have been reduced under the effect
of DBS, to support and to accompany the patient in his or her social
reintegration and adjustment process. For the medical team, and as I
observed, it added up to listening and supporting, counseling, and referring,
associated if needed with a psychopharmacological prescription (mostly
antidepressants).

SENSITIVITY TO NATURALISTIC
EXPLANATORY MODELS?

The situations of these two patient populations submitted to DBS may seem
close (the therapy seems to be effective, their symptoms are improved but
they complain about their situation), but there is an essential, subtle
distinction between them: as I observed in consultation or as they expressed
during interviews, OCD patients did not complain about the stimulation,
did not include it in their problems, or did not wish to settle them by acting
on the stimulation itself, whereas for some PD patients DBS was the cause
of their problems and/or the solution to them.

PD Patients Reinforce the Neuroscientific Discourse

When we look at stimulated PD patients who are having adjustment

problems or are not satisfied, we in fact find that the greatest ambiguity
comes from the fact that some of them (and/or their close relations)
spontaneously cerebralized their problems by indicating DBS and its effects
as their direct cause. Here, DBS itself becomes the centre of a new causality
model. These patients ask, as we observed in consultation and as shown by
some of the situations presented earlier, to be stimulated according to their
subjective experience and to solve problems that they see as having appeared
following the effects of the technique (and which, according to the CRC, are
190 BAPTISTE MOUTAUD

of a ‘psycho-pedagogical’ nature with no DBS causality). They believe that

the DBS parameters have not been properly set, and will ask for them to be
adjusted, or for stimulation to be increased (situation 1). Others may claim
that stimulation has been terminated (situation 3). There are also spouses
wanting the neurologist to change the stimulation settings (or to stop it) in
order to modify the behavior of the stimulated patient; for instance, to make
him go back to ‘‘like he was before’’ (Schüpbach et al., 2006, p. 1812). These
requests are made because patients or those close to them want to improve a
state that is not only related to neurological motor criteria but to a more
general personal context that they describe or that the team designates, such
as ‘‘fatigue,’’ ‘‘lack of desire,’’ ‘‘loss of energy,’’ ‘‘relational problems,’’
‘‘maladjustment,’’ and so on. PD patients understand DBS as the cause of
these problems and/or the solution to them. These patients thus reinforce
the neuroscientific discourse and seem sensitive to the cerebralization of
their experience through this technology.
The same phenomenon might be found among the implanted OCD
patients in the ward. They too could ask to be further stimulated to counter
feelings of ill-being, or claim that stimulation must have stopped because
they do not feel well. But this is not the case. These patients never mentioned
DBS and its effects to legitimize their situation or their experience and the
consequences of their new state. They only asked for the settings to be
changed when they had behavioral side effects (such as hypomania for
Melville and Yvan), or to be stimulated again when DBS has been stopped
during the protocol. They do not cerebralize their condition, and respect the
fields of action singled out by the team. Their OCD has been improved by
DBS but they do not see it as part of the problems they have encountered in
their social adjustment or their depressive state. On the contrary, they
reinforce the care model advocated by the CRC (centered on a
‘psychotherapeutic’ model). All these problems, if they occur, are caused
by their depression, which seems unaffected by DBS. The depression in fact
explains what DBS did not improve.

Incorporating explanatory models throughout an entire care trajectory

Why do PD patients complain and not OCD patients? Some of the reasons
are rooted in these patients’ disease trajectory: this treatment could provoke
a rupture in the patient’s life and care trajectory (cf. Bury, 1982; on PD
cases, see Gisquet, 2008; Moutaud, 2008).
Applications of DBS to OCD and Parkinson’s Disease 191

More specifically, the three OCD patients have discovered a therapeutic

effect in DBS. Their OCD has almost completely disappeared – something
they had never before experienced. For all three, the disease had been
getting worse before the operation. Although their new situation is
imperfect, they see it as improved and DBS as directly beneficial. Even
though they are still depressed and are having trouble readjusting, they
never cite DBS as part of the problem and have accepted the necessity of
long-term ‘psychotherapeutic’ care – as well as an interpretation of their
condition based on this model. Contrary to the PD patients, ‘psychother-
apeutic’ models are ones with which they are already very familiar. They
have already been involved with psychological therapies in the course of
their disease. As for PD patients, DBS is the last-chance treatment, and
above all, it puts them into a new form of ‘psycho-pedagogical’ care, to
which they have to adjust as much as to the effects of the treatment. This
‘psycho-pedagogical’ care is then going to structure the team’s line of action
to address their social-readjustment problems. In other words, where DBS
opens new perspectives for OCD patients by setting in motion, on a new
basis, therapeutic modalities that had reached their limits previous to
implantation (specifically, psychotherapy, and medication), DBS remains a
last-hope treatment for PD patients and ‘psycho-pedagogical’ care, here,
simply underscores the limits of DBS.
What is interesting here, however, is not only why distinct cerebralization
processes are observed, but why in fact patients cerebralize their condition
at all. Why in some cases do PD patients prefer to make DBS responsible for
their situation or the solution to it rather than the ‘psycho-pedagogical’
explanatory models provided by the team? In what follows, I outline a
provisional answer to this question.

OCD: A SHORT HISTORY OF MORALITY TO THE

POINT OF ABSURDITY

Locating a reason that might explain the phenomenon under examination

necessarily shifts our attention to another dimension of OCD; that is, the
conceptions conveyed by this neuroscientific technology and the representa-
tions of the events that it entails. As I will describe, DBS offers these PD
patients a new causality model to explain their problems.
192 BAPTISTE MOUTAUD

A causality that Frees of Guilt and De-Moralizes

First, listen to Yvan, who explains what OCD is:

I’m absolutely convinced that it’s a neurotransmitter problem, that it’s a neurological,
not a psychiatric problem due to some trauma or something like that. And well, there’s
also the stream of life, which can be a precursor to the disorder or to emotions that might
have caused the disorder. Anyway, maybe I was predisposed but, well, the OCD is what
predisposed me, that is, the neurotransmitters. I’m sure that education, who you live
with, your childhood, can also play a role, but I definitely believe that at the start this is a
neurological problem, more than a psychiatric or environmental problem.

Yvan’s comments exemplify those made by the other patients. Accord-

ingly, we need to ask: why did most OCD patients that we questioned
choose these explanatory models? Why do they locate the disorder in the
brain and its (dys)functionings?
One of the clinical specificities of OCD is that those who experience it are
perfectly aware of their behavior and thoughts, as well of their absurdity
(i.e., they consciously produce strange discourse and behavior, which they
can rationalize and cast doubt on, as opposed, for instance, to individuals
who are psychotic). Patients are then very often ashamed of their thoughts
and behavior, seeing it as a kind of ‘‘madness’’ (Yvan); a weird sort of
mania, an eccentricity they cannot get rid of, of which they believe they are
the sole victim, and which affects them deeply and personally. They thus
prefer to hide, motivated by feelings of shame and absurdity (Osborn, 1999;
Rapoport, 1989).
In such cases, naturalistic models seem to get positive reception among
these patients. This is confirmed by the fact that some of them express a
mixture of relief and gratitude for these explanatory models and the
depersonalization they imply. For instance, during an interview in his office,
an OCD specialist suggested that I meet a patient who was waiting for our
interview to end in order to consult with him. He saw in a young woman
who declared that she was willing to answer my questions. She told me
spontaneously, specifying that the situation could be embarrassing, that she
was sexually obsessed by people she met, but that it was no longer a problem
for her to talk about it. She told me that the first time she came to see this
psychiatrist, he had explained her disorder to her and most of all assured her
that she was not the only one to suffer from it, and had acquainted her with
the basics of cognitive and behavioral theories and associated therapies.
These models had then allowed her, she said, to realize that she had ‘‘no
responsibility’’ in her disease; at least, no more than her family or the education
she had received. ‘‘Ever since,’’ she declared, ‘‘I’ve stopped feeling guilty,’’ This
Applications of DBS to OCD and Parkinson’s Disease 193

is because the disorder is ‘‘in my brain.’’ Referring to the brain and its
dysfunctions (or to genes and their innate nature, which also comes up in the
patients’ discourse) provides a causal model that depersonalizes OCD: it is
no longer the patient’s disorder, generated by his or her history; rather, it is
that of his or her brain, which produces it. There is therefore no
responsibility to be sought in its genesis. The patient is subjected to the
disorder.
The conceptions used today for OCD in psychiatry were formulated on
the basis of the dismemberment of obsessional neurosis under the impulse
from the 1960s to the 1980s of three contingent major causes (common to
many psychiatric disorders, see Ehrenberg, 2009; Lloyd, 2008; Young,
1995): (1) the discovery of a specific chemical treatment, clomipramine,
which led to the biological theorizing of the disorder and above all, initiated
the development of research (Healy, 1998); (2) the thrust of cognitive and
behavioral theories and of their treatment; (3) the fact that the two
movements participated in the conceptualization of what OCD is today,
which has been institutionalized through international classification
(American Psychiatric Association, 1980), which would then serve as a
fundamental reference in the studies that were to follow. The biologization
of OCD would then gain new impetus with functional neuroimagery
development during the 1990s. These currents led to deep conceptual
transformations in the content of the disorder and its explanatory models, as
well as to shifts in diagnostic and therapeutic practices. They radically
changed representations of the disease by changing the status given to OCD
symptoms (Castel, 2008). We should note that their explanatory models,
more specifically cognitive-behavioral theories, turned on two basic ideas.
The first is that obsessions are normal thoughts that anyone can and does
have on a regular basis. Imagining pushing someone onto the subway rails,
having incestuous thoughts, fearing contamination from microbes; these are
thoughts that cross everybody’s mind. But a ‘normal’ person pushes them
away as being absurd, irrational, inappropriate, or immoral. What is
pathological, therefore, is the invasion of these thoughts, due to a failure in
patients’ cognitive interpretation and inability to be rid of them. The patient
here grants disquieting thoughts too much importance (Rachman & Da
Silva, 1978). The second idea is that compulsions are also of part of the
machinery of ‘normal’ motor behavior that we have all learned or which
might be innate. We all check, wash, accumulate, and count, and some
animals do the same (Rapoport et al., 1992). This would explain why the
same compulsive symptoms are found all over the world. Once again, it is
the patient’s inability to control this behavior and their pathological
194 BAPTISTE MOUTAUD

repetition to the point that they no longer make any sense that is
characteristic of OCD.
By postulating the normality, or even the banality of obsessive thoughts
and compulsive behavior, cognitive-behaviorist theories empty the symp-
toms of any significance. They invalidate the moral and personal dimension
of their content. The symptoms can even vary in the course of the disease
and can only be the consequence of cognitive and behavioral processes’
running out of control, the manifestation of conditioning and habituation to
the mechanical relationship or of a neurochemical dysfunction. It is no
longer the patient who is producing them; instead they come from a
commonly established behavioral and cognitive repertoire, and this empties
them of any meaning. Although shame about the thoughts or responsibility
for the acts and guilt regarding their repercussions are still completely
present in the patients’ discourse and are partly the cause of their suffering,
they are alleviated by these theories. Individual responsibility and guilt
feelings no longer make sense. The suffering is shifted from feeling
responsible for the moral or guilt-producing content of the thoughts and
behavior, and their consequences on the patient’s life – which is what makes
obsessions out of them – to awareness of their absurdity or of how time-
consuming they are. The obsession loses its semantic content. The patient is
relieved of its moral and personal character (Castel, 2008).

Inside the Brain But Not Inside the Individual

The three implanted OCD patients at the CRC have been exposed to these
naturalistic explanatory models in the long course of their disease and have
integrated them into their explanation of the disorder and understanding of
their selves. The models have structured their care and have underpinned the
two main treatments they have received: psychopharmacology and cognitive
behavioral therapy. The models have also been supported by reading
mainstream publications written by psychiatrists who actively helped
promote these therapies, starting in the late 1980s (such as Cottraux,
1998; Osborn, 1999; Rapoport, 1989). None of the three patients engaged in
any kind of psychoanalytic therapy. Among the other patients I met with,
few of them have turned to this kind of treatment, which seems, according
to their testimonies, long and to have little immediate effectiveness
(although it does make it possible ‘‘to learn more in depth,’’ according to
an anonymous patient during an OCD support group). They also show,
however, as Yvan does above, that they are familiar with psychodynamic
Applications of DBS to OCD and Parkinson’s Disease 195

models. This is how Quentin (a 52-year-old OCD patient) explained the

causes of his disorder and interestingly combined psychological with
naturalistic vocabulary and explanatory models:

I was 27 when I started to develop my OCD. It probably was the consequence of a

difficult relationship with a person who was also psychologically troubled. I think she
was kind of mythomaniac. She lied to me all the time. I just couldn’t take it anymore.
[y]. After a year, I finally confronted her. I told her that I couldn’t trust her anymore.
And I asked her to leave. It affected me big time. I think the OCD started just then: I was
constantly in doubt about her. And you know, OCD it is doubt, doubt all the time. I just
made the connection. I can’t explain it any other way. [y] This is just a hypothesis:
maybe there was a predisposition in me to having OCD, and the relationship just
triggered it. I had some psychological weakness, a susceptibility to OCD. Experts think
it’s plurifactorial: from the beginning – from birth – or through the environment. I also
had a very conflicting childhood with my mother.

These psychodynamic models are employed to complete the biological,

cognitive, and behavioral models by explaining other aspects of their
experience and their history; in particular, life events that might have
triggered the appearance of the disorder, supported by a biological
predisposition.
The cerebral conception of obsessive and compulsive symptoms is echoed
among the patients when they describe their obsessions as a constraint
coming from the outside, as parasites ‘‘invading’’ their thoughts (Yvan), or
as ‘‘an alien in the head’’ (Jacques, a 55-year-old OCD patient). It is also
underpinned by the evocative title of a mainstream publication – not
translated into English – by a French specialist on OCD: ‘‘Les ennemis
intérieurs’’ (title means: ‘‘Internal enemies’’) (Cottraux, 1998). This
resonates with the expressions used occasionally by neurologists, who
mention ‘‘involuntary thought movements,’’ or ‘‘mind tics.’’ The obsessions
would, then, be neurological phenomena that parasitize the patients, absurd
thoughts that harass them and of which they cannot be rid, unconnected
as such to themselves as persons who are morally responsible for their
thoughts and actions. OCD would be inside the brain, but outside the
individual, therefore in their body but outside their subjective activity. Here,
cerebralization is a way of externalizing the source of the difficulty: the
patients are not, as moral subjects, those who produce the obsessions and
compulsions that invade them, they are victims of these latter, which are
brain mechanisms. These are in their body, but outside their will. This
marks the passage from an individual whose inner life is prisoner to an
endogenous suffering to an individual invaded from the outside by an
exogenous disorder.
196 BAPTISTE MOUTAUD

This model reverses the psychodynamic and psychoanalytic models

marked by the figure of the obsessional individual inherited from the
nineteenth century and dominated by the Freudian concept of obsessional
neurosis, overwhelmed with remorse, doubt, and guilt (Castel, 2008). With
the biological models of OCD, the origin of the disease is not at all sought
in the patient’s history, nor is a structure to the disorder located, as might
be done by the therapists employing a psychodynamic conception of the
disease. There is no origin buried in unconscious processes, no guilt-
generating repressed desire or intrapsychic conflict. The disease has no
personal history other than that of its clinical evolution.
Coming back, then, to our cases of stimulated PD patients who
cerebralize their condition, we could say that making DBS the cause and/
or the solution to the problems in their relationships, their fatigue, or to
their socially maladjusted behavior allows them, as well as their close
relations, to shift the guilt-producing moral or personal dimension of the
problem to an external organic cause of the situation. Referring to the brain
or to the effect of DBS makes it possible to rid the events of moral value,
and see them as the product of neuronal dysfunctions.

PATIENTS’ CURSE DISPELLED BY NEUROSCIENCE?

By choosing this cerebral model of disease causality, which places the brain
as reference point, patients provide the pathological event with a new value,
which is materialized in the way they experience the disease and in the
connections to their whole life this model introduces. We can make a
parallel with the causal explanatory model in the Zande witchcraft studied
by Evans-Pritchard (1937). The Zande people are a far cry from our patients
who have electrodes implanted in their brain, but it is precisely this
comparative principle that will help to shed light on a complex situation and
to measure its reach. Evans-Pritchard explains that witchcraft offers the
Zande a way of explaining unfortunate events that Western rationality
would define as ‘natural’ (diseases, accidental deaths, or accidents involving
bodily injury, for example). To do so, he develops several examples that
have become classics in the ethnological literature: an Azande who is injured
by knocking his foot against a stump and whose wound becomes infected,
or the death of an Azande provoked by the collapse of a granary or the
charge of an elephant. All of these events are assigned to witchcraft:
someone has placed a curse on the victim, hence his or her misfortune.
Applications of DBS to OCD and Parkinson’s Disease 197

Witchcraft is not used to explain how the misfortune happened nor is it its
‘natural’ cause, which is well-known: if you knock your foot you can get
injured, termites have weakened the structure of the collapsed granary, or an
elephant is dangerous. It explains why this has happened to one particular
person and not another, and at this precise moment, when he or she has
faced similar situations without this happening: ‘‘It is the particular and
variable conditions of an event and not the general and universal conditions
that witchcraft explains’’ (Ibid., p. 69). It allows a reinterpretation of the
event that gives it a new value. Evans-Pritchard therefore shows that the
Azande know the natural causes of the events that they explain by
witchcraft, but that for them, the two types of causalities are not at all
mutually exclusive or contradictory. The two causality models ‘‘supplement
one another, the one accounting for what the other does not account
for.’’ The Azande then choose the ‘ideological pivot,’ the one that is
‘‘socially relevant’’ and ‘‘allows intervention and determines social
behavior’’ (Ibid., p. 73).
Thus, an unfortunate event such as a death is not only a natural fact but
also a social fact, which an explanation based on witchcraft, as a ‘‘natural
philosophy’’ (Ibid., p. 63), makes it possible to connect to the human world
and its value system, and to determine the behavior it implies. It connects an
individual to a phenomenon and gives the latter meaning by reintegrating it
into the links maintained by the former. You can only be cursed by someone
who wishes misfortune upon you and the ensuing misfortune calls forth the
fabric of relations in which the individual is enclosed. Witchcraft gives
unfortunate events a new value.
What we are trying to explain here is that when PD patients reduce the
cause or solution of their problems to DBS and its settings, they, too, choose
the ‘ideological pivot’ from among the different sets of explanations before
them to explain and rationalize their experience.3 Within the interweaving
biological, psychological, and sociological causes, everyone chooses the one
that offers the solution that seems most likely to meet his or her
expectations. Just like the Azande, stimulated patients know of the other
types of causality but choose the one that will give events a new value
through the stimulation by generating new connections: the problem is
shifted away from a situation in which they are responsible vis-à-vis their
relationship with the neurologist and the stimulation settings, i.e. to a
situation that wishes itself outside of the subject’s subjective activity. In this
new cerebral causality model, the relationship value is subordinated to the
brain-based explanatory model, to the value of the brain. This causality
model does not replace the ‘psycho-pedagogical’ explanatory model
198 BAPTISTE MOUTAUD

(on which the CRC bases its care and which is reversed by these patients),
nor does it make it disappear. It is still more likely to be used for certain
situations. The success of referring to the brain and its dysfunctions as a new
‘ideological pivot’ may come from the fact that it gets rid of guilt and takes
the moral value away from the problems; for instance, problems in a
relationship will no longer be those of two individuals but an effect of the
DBS or of its bad settings, which has induced behavior leading to conflicts.
This model tends to relate the normative issue to a cerebral, biological
reference. As such, the origin and solution of the problems for the PD
patients lie in the neurologist’s hands. DBS, then, is what has either ‘‘placed
a curse’’ on the patient or will ‘‘dispel the curse’’: his or her fatigue is not
psychological and his or her relationship problem is not due to any gaps in
the information he or she has received. Just as for patients suffering from
OCD, the cause is in the brain but outside the individual and his or her
world of relations and history. OCD and PD patients, by invoking these
cerebral models, rid themselves of the moral value and guilt inherent to the
subjectification of the content of their symptoms or problems. The disorder
is in their brain, in their body, but outside the moral person.4

CONCLUSION: THE REVENGE OF THE

LOOPING EFFECT5

Patients’ (re)interpretations of their disease experiences or of the problems

they might run into during their care shows how a form of therapy and the
explanatory models it conveys can transform the experience of individuals.
This concurs with the interactive ‘‘classificatory looping’’ model developed
by Hacking (1999), who postulates a form of circular interaction between
classifications and the classified individuals. How individuals are classified
(here, through their disease) affects their experience and behavior and the
ensuing practices. Diagnoses, therapies, and categorization of the behavior
interact with one another and with the individuals’ experience. We have seen
how in the case of OCD patients, the biological etiology of the disorder is
then echoed in their description of their experience of the disease and/or
their recovery. The application of DBS and its effects confirm this biological
etiology empirically.
The neuroscientific naturalizing discourse identifying the social subject as
a ‘‘cerebral subject’’ (Ehrenberg, 2004; Vidal, 2009) is then materialized in
these patients’ expectations: it provides them with a new language through
Applications of DBS to OCD and Parkinson’s Disease 199

which they think they are better able to articulate their experience, or define
a pathological identity or a model for action (though none of them go so far
as to identify themselves explicitly as their brain). Indeed, for PD patients, it
is interesting to see how they turn around the ‘psycho-pedagogical’ model
they are offered as an explanation to their problems by preferring the
cerebralization conveyed by the technology. They divert DBS to reconfigure
their world. This is, in effect, a ‘revenge of the looping-effect.’ For these
patients (or their close relations), the cerebral model that they appropriate is
part of a coherent system reflecting a view of their situation and through
which they express their ill-being. It offers them a way of understanding
events that allows them to put them back in their life, to place their
problems or their suffering in an objective category, to define a form of
action, and to deploy solutions, (i.e., modify the stimulation parameters).
Similarly, Dumit (2003a, 2003b) has demonstrated how reference to a
diagnostic neuroscientific technology such as positron emission tomography
makes it possible to engage a process of objectivation of pathological states
with an undefined etiology, and of the subjective experience of the disease.
Here, however, the references used (naturalistic, psychodynamic, ‘psycho-
pedagogical,’ and so on) coexist and are used in turn, without necessarily
being brought into question (Ortega, 2009; Pickersgill et al., 2011). They are
articulated with the patients’ experience in order to offer a new idiom and a
new ethics for action that – in certain situations – might allow individuals to
unburden themselves of the moral conflicts regarding the origin of their ill-
being by externalizing their responsibility. This model allows them to get rid
of the ‘mind’ as relating them to their world to the benefit of the ‘brain’ as
individual identity that governs their actions. In this parallel action pro-
gram motivated by the cerebralization of their experience, patients try to
enhance – through this biotechnology and a direct action on their brain – a
various range of capacities and undefined personal situation (and sometimes
even ask for the neurologist’s external programmer). DBS then becomes a
technique for self-improvement.

NOTES
1. ‘‘Honeymoon’’ is the expression used by neurologists to describe the effects of
the pharmacological treatment during the first years, before its effectiveness wears
off and side effects appear.
2. The team also provides explanations based on the specificity of implanted-
patient populations and of the French care system (Agid et al., 2006b).
3. Our appreciation to Bruno Latour for a clarification of this analysis.
200 BAPTISTE MOUTAUD

4. In some African ‘‘magical-religious’’ interpretations, the source of the disease is

also outside of the individual, but in a socially located agent (such as a direct
ancestors or a sorcerer) (Evans-Pritchard, 1937; Zempléni, 1985). For OCD patients,
the exogenous model of the disorder does not place the source of the disease in the
social body, but rather both in their body – in an impersonal brain – and outside of
themselves as a moral person, which is the last shelter for their subjective identity.
We hope to be able to clarify this ambiguous cleavage further on.
5. Margaret Lock on stimulated PD patients (personal communication).

ACKNOWLEDGMENTS

I would like to thank Alain Ehrenberg and Pierre-Henri Castel for their help
on earlier drafts of this chapter, Ira van Keulen and Martyn Pickersgill for
their comments and editorial work and Marina Urquidi for her language
expertise. This research was funded by the Caisse National d’Assurance
Maladie des Travailleurs Salariés.

REFERENCES
Agid, Y., Schüpbach, M., Gargiulo, M., Mallet, L., Houeto, J. L., Béhar, C., y Welter, M. L.
(2006a). Neurosurgery in Parkinson’s disease: The doctor is happy, the patient less so?
Journal of Neural Transmission Supplementa, 70(8), 409–414.
Agid, Y., Schüpbach, M., Gargiulo, M., Mallet, L., Houeto, J. L., Béhar, C., y Welter, M. L.
(2006b). Reply from the Authors. Neurology Online, 9 November.
American Psychiatric Association. (1980). Diagnostic and statistical manual of mental disorders
(3rd ed). Washington, DC: American Psychiatric Association.
American Psychiatric Association. (2000). Diagnostic and Statistical Manual of
Mental Disorders (4th ed.-Text Revision). Washington, DC: American Psychiatric
Association.
Appleby, B. S., et al. (2007). Psychiatric and neuropsychiatric adverse events associated with
deep brain stimulation: A meta-analysis of ten years’ experience. Movement Disorder, 22,
1722–1728.
Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness,
4(2), 167–182.
Castel, P.-H. (2008). De la névrose obsessionnelle aux TOC: remarques sur le passage du
paradigme psychanalytique au paradigme cognitivo-comportementaliste. In:
F. Champion (Ed.), Psychothérapie et Socie´te´ (pp. 186–202). Paris: Armand Colin.
Cottraux, J. (1998). Les ennemis inte´rieurs. Paris: Odile Jacob.
Diamond, A., & Jankovic, J. (2005). The effect of deep brain stimulation on quality of life
in movement disorders. Journal of Neurology Neurosurgery and Psychiatry, 76(9),
1188–1193.
Dumit, J. (2003a). Is it me or my brain? Depression and neuroscientific facts. Journal of Medical
Humanities, 24(1/2), 35–47.
Applications of DBS to OCD and Parkinson’s Disease 201

Dumit, J. (2003b). Picturing personhood. Brain scans and biomedical identity. Princeton, NJ:
Princeton University Press.
Ehrenberg, A. (2009). The weariness of the self. Diagnosing the history of depression in the
contemporary age. Montreal: McGill-Queen’s University Press.
Ehrenberg, A. (2004). Le sujet cérébral, Esprit, Novembre, 133–155.
Ehrenberg, A. (2010). The ‘social’ brain. An epistemological chimera and a sociological fact. In:
F. Ortega & F. Vidal (Eds.), Neurocultures. Peter Lang, New York: Glimpses into an
Expanding Universe.
Evans-Pritchard, E. E. (1937). Witchcraft, oracles and magic among the Azande. London:
Oxford University Press.
Gisquet, E. (2008). Cerebral implants and Parkinson’s disease: A unique form of biographical
disruption? Social Science & Medicine, 67(11), 1847–1851.
Hacking, I. (1995). Rewriting the soul: Multiple personality and the sciences of memory.
Princeton, NJ: Princeton University Press.
Hacking, I. (1999). The social construction of what? Cambridge, MA: Harvard University Press.
Healy, D. (1998). The antidepressant era. Cambridge, MA: Harvard University Press.
Houeto, J.-L., et al. (2002). Behavioural disorders, Parkinson’s disease and subthalamic
stimulation. Journal of Neurology, Neurosurgery and Psychiatry, 72(6), 701–707.
Houeto, J.-L., et al. (2006). Subthalamic stimulation in Parkinson disease: Behavior and social
adaptation. Archives of Neurology, 63(8), 1090–1095.
Krack, P., et al. (2003). Five-year follow-up of bilateral stimulation of the subthalamic nucleus
in advanced Parkinson’s disease. New England Journal of Medicine, 349(20), 1925–1934.
Lloyd, S. (2008). Morals, medicine and change: Morality brokers, social phobias, and French
psychiatry. Culture, Medicine and Psychiatry, 32(2), 279–297.
Mallet, L., et al. (2008). Subthalamic nucleus stimulation in severe obsessive – Compulsive
disorder. New England Journal of Medicine, 359(20), 33–46.
Moutaud, B. (2008). ‘C’est un problème neurologique ou psychiatrique ? Anthropologie de la
neurostimulation intracrânienne appliquée à des troubles psychiatriques *. In:
J. N. Missa (Ed.), Les maladies Mentales (pp. 175–214). Paris: Presses Universitaires
de France.
Moutaud, B. (2010). L’implantation de la recherche clinique à l’hôpital en France :Histoire de la
création des centres d’investigation clinique. Médecine/Sciences, 26(7), 768–771.
Ortega, F. (2009). The cerebral subject and the challenge of neurodiversity. BioSocieties, 4(4),
425–445.
Osborn, I. (1999). Tormenting thoughts and secret rituals. New York: Dell.
Perlmutter, J. S., & Mink, W. (2006). Deep brain stimulation. Annual Review of Neuroscience,
29(1), 229–527.
Pickersgill, M. (2009). Between soma and society: Neuroscience and the ontology of
psychopathy. BioSocieties, 4(1), 45–60.
Pickersgill, M. D., Cunningham-Burley, S., & Martin, P. (2011). Constituting neurologic
subject: Neuroscience, subjectivity, and the mundane significance of the brain.
Subjectivity, 4(3), 346–365.
Rachman, S. J., & Da Silva, P. (1978). Abnormal and normal obsessions. Behaviour Research
and Therapy, 16(4), 233–248.
Rapoport, J., et al. (1992). Drug treatment of canine acral lick. An animal model of obsessive-
compulsive disorder. Archives of general psychiatry, 49(7), 517–521.
Rapoport, J. (1989). The boy who couldn’t stop washing. New York: Penguin.
202 BAPTISTE MOUTAUD

Rose, N. (2007). The politics of life itself: Biomedicine, power, and subjectivity in the twenty-first
century. Princeton, NJ: Princeton University Press.
Schüpbach, M., et al. (2006). Neurosurgery in Parkinson disease: A distressed mind in a
repaired body? Neurology, 66(12), 1811–1816.
Vidal, F. (2009). Brainhood, anthropological figure of modernity. History of the Human
Sciences, 22(1), 5–36.
Young, A. (1995). The harmony of illusions: Inventing post-traumatic stress disorders. Princeton,
NJ: Princeton University Press.
Zempléni, A. (1985). Du dedans au dehors: transformation de la possession-maladie en
possession rituelle. International Journal of Psychology, 20(3–4), 663–679.
COGNITIVE ENHANCEMENT?
EXPLORING MODAFINIL USE IN
SOCIAL CONTEXT

Catherine M. Coveney

ABSTRACT

This chapter takes the ‘wakefulness promoting’ drug modafinil as an

exemplarity case in the sociology of pharmaceutical enhancement. The
chapter draws on empirical data collected through 25 interviews with
prospective users of modafinil, focusing on two of the ways in which
prospective users of modafinil imagined how the drug might be used in
their specific social domains: the use of modafinil as a safety tool in the
workplace and its use as a study aid by university students. The data
presented in this chapter suggests that although a therapy-enhancement
dichotomy is a useful heuristic; it could also be limiting to uphold as it
may direct attention away from other ways in which uses for new
technologies can be positioned, negotiated, realised and resisted by
(potential) users in the context of their daily lives.

INTRODUCTION

Throughout history, people in cultures and communities across the world

have experimented with foods, herbs and drugs to alter their minds, bodies

Sociological Reflections on the Neurosciences

Advances in Medical Sociology, Volume 13, 203–228
Copyright r 2011 by Emerald Group Publishing Limited
All rights of reproduction in any form reserved
ISSN: 1057-6290/doi:10.1108/S1057-6290(2011)0000013013
203
204 CATHERINE M. COVENEY

and performance (Escohotado, 1999). A wide variety of different products

promising to enhance ‘brain power’ are commercially available, ranging
from foodstuffs that contain caffeine and Omega 3 fish oils and herbal
products such as Gingko Biloba, to computer-based brain training games
and devices. As we look to the future, it is not only science fiction novels and
films that portray visions of a society in which the minds and bodies of
humans can be further altered chemically for various ends. There is
currently a range of different pharmaceutical drugs, both on the market and
in development, that claim to alter cognitive function in some way.
Traditionally, such drugs have been developed for established – if contested –
medical conditions [e.g. attention deficit hyperactivity disorder (ADHD)] and
are licensed for use by specific patient populations.
In recent years, bioethicists have become increasingly concerned with such
drugs. In 2002, the term neuroethics was coined to describe a new sub-field
of inquiry addressing the specific ethical issues arising from manipulation of
the human brain (Marcus, 2002; Conrad & De Vries, Chapter 13, this
volume). Neuroethical debates surrounding the acceptability of cognitive
enhancement have been extensive and have caught the imagination of
publics and professionals alike, sparking further debate in various arenas
outside of academia from popular media to parliament (DTI, 2005; POST,
2007). Much of the ethical discourse is based on the claim that healthy
people of all ages are already using pharmaceuticals to enhance cognition in
several domains of social life, from the classroom to the workplace (Butcher,
2003; Chan & Harris, 2006; Farah et al., 2004; Glannon, 2006; Greely et al.
2008; Hyman, 2006; Maher, 2008). Framed through a therapy-enhancement
dichotomy, drugs that have been developed for the treatment of diseases and
disorders are presented as having applications outside the terms of their
product license (‘off-label’), as performance enhancers in addition to being
treatments for disease. Examples of some such compounds are: methylphe-
nidate-based products (e.g. Ritalin, Concerta) for the treatment of ADHD
that are reportedly being used by some students as a way to enhance their
concentration levels (e.g. Teter, McCabe, LaGrange, Cranford, & Boyd,
2006; White, Becker-Blease, & Grace-Bishop, 2006); Ampakines (being
developed by Cortex Pharmaceuticals) for the treatment of Alzheimer’s
disease that could potentially be used as an memory enhancers; CREB
(cAMP response element binding protein)-based compounds (being devel-
oped by Helicon Therapeutics) for cognitive disorders such as post-
traumatic stress disorder that may find uses amongst healthy people to
improve or diminish memories; and modafinil-based products (e.g. Provigil,
Alertec, Modalert) that are licensed for the treatment of sleep disorders such
Cognitive Enhancement? Exploring Modafinil Use in Social Context 205

as narcolepsy and also have potential for promoting alertness in those

without pathology (Müller, Steffenhagen, Regenthal, & Bublak, 2004;
Pigeau et al., 1995; Turner et al., 2003).
Taking recent neuroethical debates about cognition enhancing drugs as a
point of departure and drawing on sociological literature regarding the
medicalisation and pharmaceuticalisation of cognition, in this chapter I analyse
modafinil as an exemplary case in the sociology of pharmaceutical enhance-
ment. Modafinil was chosen as a case study drug for several reasons: it is
currently available in the United Kingdom as a prescription medication; it
has been tested for cognition enhancing effects in healthy populations; and it
has been the subject of debate in both the scientific and popular press as well
as being one of the focal points of the neuroethical discussion on human
cognitive enhancement. My aim is to begin to unravel the ways in which pro-
spective users of modafinil think about, position and negotiate use of the drug
in the context of their everyday lives to reflect on how sociological engagement
with new and emerging technologies can contribute to the enhancement debate.
Without delving too far into the ethical literature about whether the pursuit
of cognitive enhancement should be endorsed or prohibited, I want to draw
attention to some of the key points in neuroethical discourse as applicable to
this chapter. First, many ethical discussions tend to bracket off the issues of
safety and efficacy, instead basing ethical analyses upon expectations that the
future will bring more effective and safer drugs. Amid claims of the reality of
pharmaceutical use to achieve cognitively enhanced mental states are several
other assumptions and expectations (see Martin, Pickersgill, Coveney, &
Williams, in press, for further discussion): that as humans, we have always
tried to enhance ourselves in one way or another; that cognitive enhancement
is desirable; that there will be an inevitable increase in the pursuit of
pharmaceutical enhancement; that widespread usage will change the way we
live our modern lives and understand ourselves; and that the future will bring
new ways of enhancing, controlling and reading the brain (e.g. see Butcher,
2003; Chan & Harris, 2006; Chatterjie, 2006; Hyman, 2006; Wolpe, 2002).
For example, Martha Farah, a prominent cognitive neuroscientist and
leading figure in neuroethics, has stated that:

enhancement of mood, cognition, and vegetative states in healthy people is now a fact of
life, and the only uncertainties concern the speed with which new and more appealing
enhancement methods will become more available and attract more users. (Farah, 2002,
p. 1125).

Alongside ethical debates about whether we should or should not attempt

to enhance our cognitive abilities, we find arguments in the sociological
206 CATHERINE M. COVENEY

literature relating to the medicalisation (Conrad, 2007) and pharmaceuti-

calisation (Williams, Martin, & Gabe, 2011) of various aspects of cognitive
functioning. Put simply, this refers to the increasing tendency for aspects of
normal human behavioural and cognitive states to be understood through
biological and medical discourses as diseases states or disorders and/or open
to pharmaceutical augmentation. As the modification of normal cognition
then becomes a possibility – conceptually at least – the use of medical
technologies and procedures for self-improvement raises important socio-
logical questions about where the limits to medical authority over the body
lie (Conrad, 2007; Coveney, Nerlich, & Martin, 2009). At the same time, it
re-ignites concerns about the blurring of the boundary between therapeutic
uses of pharmaceutical agents, and non-medical uses for enhancing
performance (Parens, 1998). Tensions arise around how legitimate uses of
medical resources should be demarcated from unjustified social control that
gives rise to further questions about the possible implications these
developments might have for how we understand normal cognitive health
and illness.
Social scientists are making distinctive contributions to understanding the
social implications of neuroscience, including pharmacological technologies
that can be used to augment brain functioning. Recent studies have shown
how medications are developed, promoted and used for specific reasons and
that they therefore embody social, cultural and political values (Singh, 2005,
2007). Others too have demonstrated that pharmaceutical technologies are
not neutral; they are coded with ideologies about the social lives,
relationships, self-image and characteristics of their consumers (Kramer,
1993; Lakoff, 2005; Martin, 2006; Rose, 2007). For instance, it has been
argued that in its privileging of penetrative sex, Viagra is a technology that is
coded with specific images of sexuality and masculinity (Potts, Gavey,
Grace, & Vares, 2003). As sociologists have long asserted, the effects of a
drug ‘‘are not simply given in the drug: they are embedded in complex
situations and the effects generated require all manner of social and
contextual supports’’ (Rose, 2007, p. 100). Additionally, the ways in which
psychopharmaceuticals are used within different sections of society and in
different cultures are likely to reflect prevailing socio-cultural norms
(Chatterjie, 2006; Malacrida, 2004). Moreover, empirical research of
ethically contentious issues has highlighted how different groups of people
can understand ethical concepts (such as the morality of drug use to enhance
performance) in several different ways (De Vries, Turner, Orfali, & Bosk,
2007; Haimes, 2002; Hedgecoe, 2001). Such studies highlight the need to
embed ethical debates about the uses of pharmaceuticals – including
Cognitive Enhancement? Exploring Modafinil Use in Social Context 207

cognitive enhancers – in their social contexts (Martin & Ashcroft 2005;

Singh, 2007).
Presently, the evidence of how, when, why and by whom cognitive
enhancers are used is limited, and the extent to which pharmaceuticals are
used for purposes of cognitive enhancement has not been subject to
extensive empirical investigation in the United Kingdom. Very few studies
have taken a sociological standpoint or investigated the use of these drugs
from users’ perspectives. As such, it is difficult to ascertain how cognitive
enhancement technologies are (or will be) used and how their uses are (or
will be) understood, positioned, resisted and realised by (prospective) users
in the context of their everyday lives. Before moving into the analysis of
empirical data that this chapter takes as its focus, I first pause to reflect on
what is meant when we speak of the term ‘enhancement’ and to provide
some background on modafinil and why this particular drug is an interesting
case to study.

WHAT IS ‘COGNITIVE ENHANCEMENT’?

Within bioethics, the term ‘enhancement’ is commonly used to refer to the

use of biomedical tools and techniques to improve the performance,
capacities or functioning of ‘normal’ or ‘healthy’ individuals (Morrison,
2008, pp. 8–9). When talking about the enhancement of cognition
specifically, several examples are regularly provided that include effects on
memory, intelligence, linguistic skill, capacity to focus on intellectual tasks
and sense perception. Usually, cognitive enhancement is separated from
mood enhancement and the use of antidepressants and recreational drugs
for this purpose. Often, the core definition of enhancement is relational; that
is, it is defined as distinct from therapy, and some indication is provided of
how one should demarcate these categories. This division usually rests upon
some concept of health, normality or typical functioning. From this
perspective, a therapeutic intervention will restore normal or typical
functioning with the aim of returning an unhealthy person back to a
healthy state, whereas an enhancement will improve or extend the abilities
or capacities of a healthy individual (someone who is already functioning
normally) outside of this normal or typical range (Hyman, 2006; President’s
Council on Bioethics, 2002; Tannsjo, 2009).
Others use the term enhancement more broadly, understanding it simply
as ‘‘improvement’’ of mind, body or performance (e.g. Conrad & Potter,
2004, p. 184). Hence, ‘enhancement’ may be employed to encompass
208 CATHERINE M. COVENEY

therapeutic as well non-therapeutic effects. In this view, every treatment is

considered to be a form of enhancement (Synofzik, 2009), and any
distinction between therapy and enhancement is thought of as either
arbitrary and difficult to uphold or not analytically useful. For instance,
bioethicists Sarah Chan and John Harris claim that the distinction between
therapy and enhancement is ‘‘at best blurred, and at worst non-existent,’’
especially in relation to mental capacities because of the broad range of
mental states that are currently defined as normal. They argue that this
‘‘renders almost any alteration inexplicable as either therapy or enhance-
ment’’ (Chan & Harris, 2006, p. 362).
The problems bioethicists face when seeking to demarcate therapy (as the
treatment of disease) and enhancement (as the improvement of a normal or
healthy state) have long been acknowledged (Parens, 1998). Concepts of
health, disease and levels of normal or typical functioning are difficult to
establish (Cahill, 2005; Daniels, 2000), and scholars often accept that such
definitions are historically situated, being both influenced and derived from
contemporary socio-cultural values and norms (Esposito, 2005; Wolpe,
2002). Many analysts recognise that what medicine chooses to treat at any
particular time and place in history is defined as disease, whilst the process
of altering what it does not treat is defined as enhancement or abuse
(Daniels, 2000; Glannon, 2006; Hyman, 2006). Accordingly, these com-
mentators acknowledge that the boundaries between what is considered
therapeutic or enhancing have shifted over time and in all likelihood, will
continue to shift in the future (Pieters & Snelders, 2009).
Some bioethicists argue that despite this definitional complexity, it is
nevertheless necessary to maintain a therapy-enhancement distinction in
ethical debates. For instance, it is useful to assess how a persons’ quality of
life can be improved without threats to health or resource consumption and
to decide the proper limits to medicine and what should be treated (BMA,
2007; Daniels, 2000; Dees, 2004; President’s Council on Bioethics, 2002;
Tannsjo, 2009). Therapy is therefore linked to the goals of the medical
institution in healing or curing illness and disabilities where enhancement is
thought of as going beyond this remit (Fukayama, 2002; Parens, 1998). In
essence, then, enhancement is typically defined as any improvement or
extension of capabilities or performance in the absence of clinically defined
illness (for further discussion see Morrison, 2008).
The relationship between pharmacological enhancement and the socio-
logical concept of medicalisation is, therefore, complex. Enhancement is
conceptualised on the one hand as going beyond health, therefore falling
outside of the remit of medical authority, and on the other as a form of
Cognitive Enhancement? Exploring Modafinil Use in Social Context 209

medicalisation when augmentation of the body (or in this case, the mind) is
understood within a biomedical framework and performed through medical
procedures or technology. In the next section I briefly introduce modafinil
before moving on to discuss two alternative ways in which prospective users
of the drug imagined it might be used.

MAKING MODAFINIL

Modafinil first came to the UK market as a pharmaceutical treatment for the

rare sleep disorder narcolepsy in 2002. Since then, its license has been extended
to cover excessive day-time sleepiness (EDS) associated with obstructive sleep
apnoea/hypopnoea syndrome and the treatment of the disruption in circadian
rhythms in individuals diagnosed with shift work sleep disorder. It has also
reportedly been prescribed off-label as a ‘wake-promoting’ substance
(Cephalon, 2008) to people diagnosed with a range of illness and conditions
that involve fatigue and sleep deprivation. Studies have shown that its use can
induce various cognitive benefits, such as improving alertness, concentration
and memory in those without illness (Müller et al., 2004; Pigeau et al., 1995;
Repantis, Schlattmann, Laisney, & Heuser, 2010; Turner et al., 2003), although
the efficacy of using the drug for this purpose has also been questioned
(Randall, Shneerson, Plaha, & File, 2002). The combined wake-promoting
and cognition enhancing effects of the drug have led to claims the substance
could be used as a performance enhancer, allegedly sparking significant interest
with military organisations around the globe (Gore, Webb, & Hermes, 2010;
Kelley et al., 2010; Sample, 2004; Sharma, 2011; Wheeler, 2006).
It is repeatedly claimed in the neuroethics literature that this drug could
potentially be taken by those without clinically defined illnesses to both
enhance cognition and reduce the need for sleep (e.g. Cahill, 2005; Farah,
2002; Glannon, 2008; Greely et al., 2008; Synofzik, 2009). Although often
referred to as a ‘‘relatively safe’’ (e.g. Sahakian & Morein-Zamir, 2007, p.
1159) drug in the ethical and media debates, modafinil does come with some
serious health warnings and is considered to be open to abuse and misuse
(Cephalon, 2008). In November 2010, the European Medicine Agency (EMA)
advised that modafinil should only be prescribed for the treatment of
narcolepsy. The reasons cited for these tighter controls included the potential
for the drug to induce severe or life threatening skin disorders, its association
with psychiatric problems such as depression, psychosis and increased risk of
suicide, and the potential for it to be misused by university students (EMA,
2010). The EMA concluded that the risks of taking the drug outweigh the
210 CATHERINE M. COVENEY

benefits in all cases except for narcolepsy, calling into question the suitability
of this particular drug as a cognition enhancer for healthy populations.
Nevertheless, despite these concerns, many different types of prospective
users of cognition enhancing drugs have been imagined in media coverage of
the drug and in ethical debates alike, from the surrounded solider (Russo,
2007) to the drowsy doctor (Cheshire, 2008). In their reporting and
discussion of cognition enhancing drugs, news media, fiction and ethical
debates depict images of a near future in which human behaviours can be
pharmacologically controlled for ultimate performance and efficiency, from
the playground to the sports field and the workplace to the retirement home,
thus perpetuating hopes and fears relating to the manipulation of human
cognition at all stages of life.
Throughout the neuroethics literature, we are presented with an image of
society that is skill driven and knowledge-based, where success correlates with
one’s cognitive abilities. Enhanced cognitive capacities are positioned as a
competitive good that can give some people an advantage over others in gaining
employment, advancing careers and earning a higher income (Butcher, 2003;
Tannsjo, 2009). To be ‘smarter’ than other people is considered to be an asset in
many situations and it is assumed that those who are not cognitively enhanced
could be disadvantaged (Gazzaniga, 2005). Fears are voiced that if the use of
cognition enhancing drugs grows in the workplace, employees could feel
compelled to take these substances to remain competitive – or simply just to
keep up (Cahill, 2005; Chatterjie, 2009; Glannon, 2008).
Commentators regularly write about the ‘‘growing demand for cognitive
enhancement’’ (Greely et al., 2008, p. 702) with some predicting that ‘‘the
drive for self-enhancement of cognition is likely to be as strong if not
stronger than in the realms of ‘enhancement’ of beauty and sexual function’’
(Sahakian & Morein-Zamir, 2007, p. 1159). In such statements, cognitive
enhancement is presented as something which people want or even need in
today’s world, making the possibility of the increasing use of enhancement
drugs by healthy persons appear inevitable (Martin et al., in press). The
assumption that there will be a high demand across society for
psychopharmaceutical enhancement plays an important role in framing the
ethical discussion. For instance, when demand for cognition enhancers is
assumed amongst healthy populations, ethical issues around autonomy,
coercion and access are brought into the spotlight. Whilst some ethicists
argue fervently in favour of ‘cognitive liberty’ (which, put simply, is the idea
that competent adults should have the right to choose whether to ‘enhance’
or not) (e.g. Greely et al., 2008), others are intractably opposed to this idea
(e.g. Chatterjie, 2009). At the same time, framing the debate in this way
Cognitive Enhancement? Exploring Modafinil Use in Social Context 211

shifts the focus from whether we should use the technologies in question to
enhance cognition, to how these technologies should be regulated (Martin
et al., in press).
Recently, there has been a flurry of papers and commentaries published
that are critical of some of the claims and assumptions embedded in ethical
debates about cognitive enhancement. Scholars from diverse fields,
including social scientists, ethicists and neuroscientists, question whether
there is currently sufficient evidence to suggest that there is a growing
demand for cognitive enhancement, and whether safe and effective
cognition enhancers are – or ever will be – available (Martin et al., in
press; Outram, 2010; Quednow, 2010; Williams & Martin, 2009). In
particular, bioethicists have been accused of ‘normalizing’ or promoting the
idea of using enhancement drugs by inflating estimates of the prevalence of
enhancement practices and making regulatory proposals that will facilitate
this type of use (Hall & Lucke, 2010).
In contrast to a significant literature debating the ethics of using new
technologies for purposes of cognitive enhancement within academic
bioethics, there are relatively few qualitative social science studies that have
looked into how cognitive enhancers are being (or are likely to be) used. It is
in this context that the current chapter is situated. The analysis presented
draws on data from a four year empirical study of the social and ethical
issues surrounding the medical and non-medical uses of cognition enhancing
drugs in the United Kingdom (Coveney, 2010). Data from 25 semi-
structured interviews with shift workers and UK undergraduate students
will be discussed. The interview population consisted of eleven under-
graduate students, a machine operator in a factory, an aeroplane loader, a
mental health nurse, a retail manager, a call centre-operative, a delivery
driver, a palliative care nurse, a junior doctor, a surgeon and a police officer.
The four remaining respondents were both students and worked shifts; one
was a student nurse, the others worked in the hospitality industry as bar or
waiting staff. Respondents ranged in age from 18 to 53. Eleven men and
fourteen women were involved. These two particular social groups (i.e. shift
workers and students) were chosen to study as they are frequently depicted
as existing or future users of modafinil in ethical debates about cognitive
enhancement and are highlighted in media portrayals of actual, emerging
and potential practices of modafinil use (Coveney et al., 2009).
Cognition enhancing drugs can be thought of as ‘emerging technologies’
that are yet to be widely introduced in the United Kingdom, and, although
modafinil is available as a prescription drug, it is currently not well known
outside of scientific and medical domains. Researching how modafinil is
212 CATHERINE M. COVENEY

thought about and its use positioned and negotiated in social context
therefore posed a particular methodological problem for the study. This was
addressed through adopting an analytical framework drawing on ideas from
science and technology studies (STS) to focus on the ways in which uses for
and users of the drug were imagined (as opposed to how it was actually
being used) by those interviewed (Borup, Brown, Konrad, & Van Lente,
2006; Brown & Michael, 2003; Wilkie & Michael, 2009; Weiner, 2010). Of
particular importance were the ways in which roles for the technology were
embedded (both explicitly and implicitly) in projections of future users and
their likely characteristics, attributes and motivations (Akrich, 1992;
Lindsay, 2005; Woolgar, 1991).
Importantly, none of the respondents had heard specifically of modafinil
before the interview. To engage prospective stakeholders in conversation
about a technology that they were not familiar with, it was necessary to
provide some information about that technology and the contexts in which
it could be put to use. The information provided to participants included a
description of the current status of modafinil as a prescription drug used to
treat sleep disorders, a summary of its potential cognition enhancing effects
and an outline of recorded adverse effects. All the information given to
participants would be accessible to ‘actual users’ of the drug through a quick
online search. Those interviewed were asked to imagine: why people might
choose to use the drug; how modafinil might be used in their social domain;
and what potential future social impacts drug use could have. The data
generated from this type of study must be recognised as accounts of people’s
actions, feelings and opinions and how these are shaped by social context,
including the interview context itself (Murphy & Dingwall, 2003). Interview
data of this sort can therefore be used to explore and to uncover the cultural
resources, norms and values that are drawn on to evaluate the acceptability
of new and emerging technologies.
Two of the ways in which modafinil use was positioned by those
interviewed will be discussed below before reflecting on the how adopting a
sociological approach to thinking about the normative dimensions of
cognitive enhancement can cast new light on and perturb some of the
assumptions structuring bioethical debates in this area.

MODAFINIL IN THE WORKPLACE

Both academic and media discourses present us with images of soldiers on the
battlefield, drowsy doctors about to perform life-saving surgery, long-distance
Cognitive Enhancement? Exploring Modafinil Use in Social Context 213

lorry drivers who drive through the night and airline pilots on transconti-
nental flights, to argue that there is a real need for technological
augmentation of cognition (and alert wakefulness) in some professions
(Coveney et al., 2009). When talking about modafinil use in the workplace,
an argument can be made that it is important for some workers to take
modafinil, not only for their own benefit, but for the safety of others. The
conclusions regularly drawn from the telling of such tales is that drugs,
provided that they are both safe and effective, should be allowed in these and
in similar circumstances. As Henry Greely, a professor at Stanford Law
School, and colleagues argue:
Soldiers in the United States have long been offered stimulant medications including
amphetamine and modafinil to enhance alertness [y]. For similar reasons, namely, the
safety of the individual in question and others who depend on that individual in
dangerous situations, one could imagine other occupations for which enhancement
might be justifiably required. (Greely et al., 2008, p. 703)

The benefits of pharmaceutical consumption are made clear: through the

further use of cognition enhancing drugs, society could have safer flights,
safer medical encounters and safer roads (Esposito, 2005; Farah, 2005;
Wolpe, 2002). Although there is by no means a consensus agreement on this
within the ethics community, we can nevertheless see that there is a space
being carved out for cognition enhancing drugs in the modern workplace.
These substances are positioned as a way to boost alertness and cognitive
functioning so that the worker and the lives of others will not be endangered
when the individual is working under pressure for extended periods.
Resonating with the above themes, one of the most common uses to
which the group of shift workers I interviewed imagined modafinil could be
put was as a type of safety apparatus in the workplace. Those interviewed
thought that modafinil could potentially be used to improve cognitive
functioning or guard against cognitive decline resulting from sleepiness or
lack of alertness, and thus prevent accidents and mistakes from occurring.
Overall, there was a high degree of conflation in the respondents’ accounts
between the wakefulness-promoting effects and cognition enhancing effects
of the drug, with the two seemingly going hand in hand. This can be
illustrated by comments made by police officer Matt; when someone is
feeling tired, sleepy or not very alert, cognitive functioning is also seen to
decline, and vice versa:
With my job, if I start feeling tired or I get slow on my work then I don’t know what can
happen with some of the people I deal with. I know your adrenalin is going to work, but
sometimes your brain just goes a bit fuzzy. I have had it occasionally when I have been
214 CATHERINE M. COVENEY

doing an interview and I am absolutely shattered and my brain is just not working and
my colleague had to take over, just because I was so tired – I was just tired [y] If you are
driving a car you need to make sure that you are alert and you are responsible as a driver
as well.

Legitimate users for the modafinil were constructed as responsible, and

often altruistic, adults taking the drug not only for the benefit of their own
safety but also for that of others. As one interviewee put it, drugs like
modafinil ‘‘are needed – because it is like the safety at work, if you are not
alert then it is actually putting yourself and other people at risk’’ (Paul,
factory worker).
Overall, the use of modafinil in the workplace was differentiated from
more general uses of the drug to enhance cognition. In the context of shift
work, the drug was often perceived as a therapeutic technology: a way to
repair a performance deficit and restore a normal level of cognitive
functioning under conditions of sleep deprivation, as opposed to something
that would boost cognition beyond a normal level or make someone ‘‘better
than well’’ (Elliott, 2003). This was viewed as a legitimate use for the drug,
whereas a technology that could be used to boost performance beyond a
normal level was thought of in terms of a ‘‘miracle’’ or a ‘‘wonder drug’’ and
was often treated with scepticism. Hamish, a junior doctor, drew these
boundaries clearly:
On a night shift when you’re really tired, you’re not quite as alert and attentive as you
would be, it just helps you to be as you normally would be then that’s different to saying
that you’re going to [take] some wonder drug that’s going to actually increase cognitive
abilities.

Pharmaceutical use was not accepted uncritically. Those interviewed

raised concerns over possible side effects the drug might have and
questioned whether other non-pharmaceutical measures could be taken
instead; for instance, changing one’s shift pattern, getting more sleep, and
using foodstuffs and herbal remedies to both promote better sleep and alert
wakefulness. The majority of respondents positioned modafinil as a type of
medical treatment that they would consider taking under medical advice as a
‘‘last resort’’ (Alan, retail staff) if there was something ‘‘really wrong’’ with
them that would ‘‘merit taking a tablet’’ (Hamish, physician). Accordingly,
many considered medical professionals as best equipped to decide who
should have access to the pharmaceutical and who should not:
If someone was struggling to stay awake or they were having problems, then I think that
[modafinil] should be publicised [y] because it is prescribed by a doctor they have got
the last say in it, so they can see if people need it or not. (Edie, call centre operative)
Cognitive Enhancement? Exploring Modafinil Use in Social Context 215

Those interviewed could easily imagine a role for modafinil as a safety

tool in the workplace. Despite this, the majority of the shift workers could
not envisage needing to use the drug themselves. This stance was justified in
two ways: first, by asserting that they were ‘good at their job’ and already
performing safely and accurately:
The more tired you are, you’re going to get it wrong, aren’t you? In that sense, it does
sound quite good, the drug, but, well, I think I’m quite good at my job, I don’t make
many mistakes. I just think it depends on the individual. (Mo, delivery driver)

Second, respondents described techniques and practices embedded in

their everyday lives, both inside and outside the workplace that in some
respects centre around the issue of safety. As explained by David, a 31-year-
old surgeon, in safety-critical occupations where sleepiness is expected, often
a range of contextual supports (including both technological aids and
human interactions) exist to monitor workers’ performance and guard
against potentially dangerous or life threatening situations (e.g. falling
asleep) arising:
If I fell asleep whilst I’m meant to be working, well, potentially, catastrophe! It would be
quite unlikely, because there’s lots of safeguards and alarms and things that would wake
me up and certainly people around.

Additionally, those interviewed described routines and rituals undertook

on daily basis, such as making sure they have an adequate amount of sleep
and using foodstuffs (particularly caffeine) to maintain levels of alertness
and performance:
Eat lots of chocolate to stay awake and drink lots of coffee and sometimes I take bottles
of Red Bull and Lucozade and just hope that the patients just keep pressing their buzzers
to keep us on the ball. (Kim, nurse)

Accordingly, there was less of a perceived need to take modafinil in the

workplace.
In other workplace environments, such as offices, where workers are not
directly responsible for the safety of others, lapses in cognitive performance
and even falling asleep at work do not pose the same dangers as losing
consciousness at the wheel of a car or in the operating theatre. As Edie, a
19-year-old telephone operator in call centre, explains:
If you did [fall asleep] then someone would just literally just come over and give you a bit
of a shake and then – you have the piss taken out of you the rest of the day, but even the
manager is quite laid back, he would come in and just laugh at you and just think you
were drunk or something. It is not – it wouldn’t be a big deal I don’t think and some
people have done it before. So you just fit in with the crowd to be honest.
216 CATHERINE M. COVENEY

Thus, the extent to which cognitive decline and lapses in alertness were
viewed as problematic differed according to occupational role and
occupational culture. In some occupations (e.g. hospital-based doctors)
technologies and other mechanisms are embedded in institutional practices
that allow for and control sleepy bodies. In other occupations (call centre,
retail staff) workplace sleepiness and associated cognitive decline were not
problematised due to the perceived lack of impact this behaviour has on
productivity (as it is less busy during late or early shifts) and the safety of
others.
When cognition enhancing technology is placed in social context, the
relevance of utilitarian philosophical arguments – for example that
enhancement is for the ‘greater good’ – are not always convincing. The
data presented here raises questions regarding whether there is, in fact,
thought to be a widespread safety or performance problem posed by sleepy
or cognitively impaired workers in the first place. This in turn casts doubts
on whether pharmaceutical ‘enhancement’ technologies are then perceived
as required or desirable. The utility of ubiquitously framing the use of the
technology in question as an ‘enhancement’ in the workplace context (by
those without clinically defined disorders) also comes into question here as
when positioned as a type of safety tool, modafinil use was considered by
prospective users to be corrective or restorative, rather than something
which could be taken with the goal of boosting mental capacities above or
beyond a normal level. This point will be returned to and reflected upon in
greater depth later on.

MODAFINIL AS A STUDY AID

In ethical and media debates, modafinil is positioned as enhancement
technology in the student domain that will enable students to study for
longer periods, stay alert during all night study sessions, perform better and
be more alert in lectures (Butcher, 2003; Cahill, 2005; Chan & Harris, 2006;
Farah, 2002; Farah et al., 2004; Forlini & Racine, 2009; Greely et al, 2008;
Sahakian & Morein-Zamir, 2007; Schermer& Bolt, 2009). Studies, mainly
based in the USA (e.g. Teter et al., 2006; White et al, 2006), are drawn on by
ethicists to alert us that an ever-increasing percentage of students are
obtaining pharmaceuticals either illegally or by false diagnosis and using
these substances to improve their academic performance. Whilst a few
commentators maintain that cognition enhancing drugs should be available
to students without prescription, arguing that the benefits of such drugs
Cognitive Enhancement? Exploring Modafinil Use in Social Context 217

outweigh the risks they pose (e.g. John Harris, quoted in THES, 2009,
p. 10), others raise concerns over the use of such substances in competitive
situations; for example, during examinations (e.g. Sahakian & Morein-
Zamir, 2007), where even small improvements in performance could
translate into substantial benefits for the individual. Ethical questions are
then raised in relation to autonomy and freedom to choose versus pressure
to enhance (Esposito, 2005; Farah et al., 2004; Forlini & Racine, 2009), and
notions of fair play and equality are invoked to support the arguments
advanced. The following section draws on data from interviews with
students to explore what taking modafinil means to this community and to
consider how students understand, position and evaluate this action
themselves (Pasquale, 2010).
Students’ accounts of modafinil use were dominated by intrigue and
temptation, and a role for the substance as a study aid, in context of
university life, was readily imagined. Those interviewed envisaged that the
technology could be used as a study aid for the purpose of performance
enhancement in several situations. These included: during exams; when
revising or writing an essay; when they were feeling stressed or under
pressure; on long days; for all-night study sessions; or if they felt their work
was going badly. Various reasons were given for why students might use
modafinil in these situations. These ranged from improving concentration to
calming nerves and relieving stress, or to improve their academic
performance if other people were taking them (i.e. so they would not be
disadvantaged or left behind). It was mostly imagined that using modafinil
as a study aid would be an acute practice taking place under these specific
circumstances. As one respondent put it:
if you had a period where you had a lot of course work to do or an exam period,
something like that would be really tempting [y] you probably don’t need it on a daily
basis. (Dave, student)

However, others, although often dubious that the drug would actually be
a safe and effective cognition enhancer, imagined using this technology all
the time to improve their academic performance-provided that they did not
become tolerant to its effects. For example:
It would probably be too good to be true. If that was the case, yeah I probably would
take them [y] if they were just generally effective full stop – if I didn’t get a tolerance to
them – then I would probably take them all the time to be honest. (Mike, student)

In general, the enhancement potential of the drug was treated with

scepticism. After being informed about the cognitive enhancing properties
218 CATHERINE M. COVENEY

of modafinil, some thought that the drug sounded ‘‘too good to be true’’ or
like a ‘‘miracle drug,’’ and doubted whether it really was that ‘‘wonderful,’’
questioning safety, efficacy and other effects it could have:
I’d be tempted to try it, I probably wouldn’t in the end, to be honest, I’d think, ‘‘oh what
is it doing to my heart?’’– that kind of thing. But, I’d be very, very tempted in regards to
trying it because, like, everybody would, if they could enhance their cognition, then they
would, I guess. (Nicola, student)

Resonating with some of the anxieties expressed by ethicists and other

commentators, the students who were interviewed raised concerns that drug
use could become standard to ensure optimal performance and that students
might become reliant on such a substance – around exam times, for
example. Respondents feared that users might become tolerant to the effects
of the drug, and that regular drug use could lead to physical addiction or
psychological dependency:
If people become dependent on it to be able to actually function properly it is going to be
like any other sort of drug addiction, you might get hooked on it and even if it isn’t
physical – it might be that they feel they have to have it to function properly. (Mike,
student)

The risk of side effects, either in the short or longer term, affecting one
mentally or physically, featured heavily in students’ deliberations about the
prospective use of modafinil as a study aid.
In general, students adopted a liberal attitude towards the use of
cognition enhancing substances by their colleagues. However, legality of
substance use emerged as an important consideration in their accounts, with
the consensus view the technology should only be used as a study aid
provided that it was legal and not breaking any rules:
As long as there was nothing to say that you shouldn’t, then yeah [y] if they invented a
drug and then it became illegal then I wouldn’t be taking them. (James, student)

The idea that using prescription medication outside of medical authority

as a study aid was in some way illicit also came across strongly in the data.
On the basis that modafinil is currently only available in the United
Kingdom as a prescription medication, students typically argued against
modafinil use by those without medically authorised problems or impair-
ments. Drawing heavily on medical rhetoric, use of this kind was
constructed as an abuse of prescription medication. Users were depicted
not as patients, but as cheats who were using the drug for the wrong reasons.
Respondents reasoned that persons ‘‘should only take medications if they
are ill’’ (Lizzy, student) or if they were experiencing ‘‘real problems’’ and
Cognitive Enhancement? Exploring Modafinil Use in Social Context 219

that using the drug for these other more ‘‘frivolous’’ (Louise, student)
reasons would be a waste of valuable medical resources.
Using modafinil as a study aid in an academic context was frequently
associated with cheating, in that using such a drug would enhance cognitive
performance and thus provide the user with an unfair advantage over other
students. Some students compared the act of taking modafinil as a study aid
to professional athletes taking drugs to perform better in sporting
competitions. They reasoned that if someone performs better with the aid
of a chemical enhancement than they could without taking the drug, this
would be cheating ‘‘because it’s not fair natural ability’’ (Bella, student).
Alternately, when imagining a future scenario in which enhancement
drugs were widely available to everyone over the counter (OTC), using
modafinil as a study aid was not associated with cheating. Instead, it was
constructed as a personal, autonomous choice. Through making the choice
to use a chemical study aid, the individual was thought to be responsible for
any potential risks to health they might be exposing themselves to in the
process. Most respondents said that if modafinil or related substances were
available OTC, then they would not judge other students negatively for
taking them – provided that use was legally sanctioned. As one interviewee
put it:
If it’s available to everyone then is it cheating because if everybody could go down to the
chemist and get these drugs, then surely it’s just a choice? Like it’s essentially saying do
you have a cup of coffee while you write your essay. It’s similar effects [y] if they’ve got
that much of a problem and they need them to work during exam periods – they could
just start revising earlier – I would think it was an interesting lifestyle choice, but I
probably wouldn’t judge them for it. (Dave, student)

As implied in the extract above, understandings of modafinil use as an

‘enhancement’ technology in the student domain were problematised by
several individuals who thought that using the drug would actually imply
that the user had a problem, inadequacy or inability to cope:
If I felt that like I wasn’t reaching my full potential in the work that I was doing or if my
concentration levels were low enough to warrant it making me more like effective at
what I was doing then I would consider taking them. (Louise, student)

In this view, instead of being seen as cheats who were abusing or misusing
the technology, users were portrayed as struggling to keep up and to
perform at an adequate level. One respondent, for example, claimed that if a
student was ‘‘not actually alert enough to take an exam without stimulants’’
then she would ‘‘feel a bit sorry for them that they couldn’t just do it without
[drugs]’’ (Emma, student).
220 CATHERINE M. COVENEY

In summary, in its configuration as a study aid, imagined users of modafinil

were constructed as either cognitive consumers making an informed choice, or
cheats who are abusing or misusing medical technology, and consequently
gaining an unfair advantage over others. This was directly related to whether
modafinil was positioned as a prescription-only medicine or an OTC product.
Safety, efficacy, fairness and legality of substance use emerged as prominent
ethical and social considerations related to this type of usage. Often it was
concerns – for example, potential health risks – that lessened the appeal of
modafinil, rather than any strong ethical objections about the use of
pharmaceuticals to enhance cognition. Despite much scepticism that the drug
would be an efficacious cognitive enhancer and regardless of their personal
inclination to take the drug, respondents thought that if provided with
enough information individuals should be able to weigh up the potential
benefits against potential harms and choose whether or not to use the drug as
a study aid – provided that the substance was freely and legally available
OTC. This resonates with the findings of other studies into the consumption
of pharmaceutical products which have shown that the location of sale of a
drug (e.g. whether it has been prescribed for the treatment of a specific
problem during a clinical encounter and is accessed through a pharmacist or
is available as a consumer product on the supermarket shelves) has the
potential to affect the way it is understood by the consumer (Harding &
Taylor, 1997; Stevenson, Leontowitsch, & Duggan, 2008).
Again, the data presented raise questions about the definition of modafinil
use as an enhancement technology in this context, since justifications for
drug use, which rest on the (potential) user having some sort of problem to
resolve or cognitive deficit to repair, cast drug use into a more therapeutic or
restorative role (rather than as an enhancement technology taken to
transcend a normal or healthy state).

DISCUSSION AND CONCLUSIONS

Motivated by recent neuroethical debates about whether society should

embrace pharmaceuticals for cognitive enhancement or not, this chapter has
taken a sociological approach to explore how prospective users of these
drugs understand, position, legitimise, resist and reject a role for enhancers
in the context of their everyday lives. Analysis of the ways in which
modafinil use was positioned and of how uses for the drug were negotiated
by those interviewed shows how different groups can conceptualise the same
technology in different ways depending on the specific context of use. Two
Cognitive Enhancement? Exploring Modafinil Use in Social Context 221

of the ways in which prospective users of modafinil imagined how the drug
might be used in their specific social domains were presented: the use of
modafinil as a safety tool in the workplace and its use as a study aid by
university students. Each of these cases highlights important sociological
issues relating to the role of medical authority in the legitimisation of drug
use, contemporary theories about the pharmaceuticalisation of sleep and
cognition, and, more generally, how understandings of contextualised
modafinil use, can contribute to further blurring of the distinction between
therapy and enhancement.
Some argue that in contemporary western societies the social role of
medicine is changing from an institution that cares for and heals the sick,
into a ‘‘vehicle for self-improvement’’ (Conrad, 2007, p. 140) through which
bodies, minds and identities can be transformed, enhanced and (re)created
through technological intervention and manipulation (Clarke, Fishman,
Fosket, Mamo, & Shim, 2003; Rose, 2007). There was little evidence of a
desire to augment normal bodies or minds expressed by the students and
shift workers I interviewed. The extent to which new pharmaceutical drugs,
like modafinil, fall under the umbrella of technologies for self-improvement
is somewhat debateable. Certainly, the problems for which there is now, or
could in the future be, a pharmaceutical fix seems to be extending into the
realms of personal life. Modafinil and like substances are being broadly
positioned by ethicists as the possible means to address concentration
problems, ones’ ability to juggle social demands and workload, and a way to
cope with heavy workloads during periods of sleep deprivation. The
increasing ‘‘pharmaceuticalisation’’ (Williams et al., 2011) of cognition
seems to be becoming a plausible possibility in what some have hailed a
‘‘hypercognitive society’’ (Post, 2000; see Williams et al., Chapter 10, this
volume) with the development of new cognition enhancing drugs. It appears
that prospective users themselves can readily imagine a range of cognitive
problems for which new drugs could become a technological fix. Prospective
users imagine that, much like taking an ibuprofen tablet to relieve a
headache or hangover, modafinil could be used for instance, to boost
cognition to improve performance when under pressure or to restore
cognitive performance during a period of sleep deprivation in the
workplace. However, as long as modafinil and similar substances remain
under medical mandate the rate at which they will attract new users and the
likelihood of pharmacological cognitive enhancement becoming a wide-
spread practice remains uncertain.
In the data collected, the consumption of medical products for purposes
other than healing was regularly thought of as an illegitimate use (or in some
222 CATHERINE M. COVENEY

cases an abuse) of medicine, rather than enhancement, clearly illustrating

the power of the medical institution in defining legitimate spaces for drug
use in British culture. Therefore, although many different types of use for
modafinil can be imagined by prospective users, acceptability of use is, to
some extent at least, normatively constrained through medical discourse as
modafinil does not easily escape its identity as a medicinal product,
ultimately bound to health, expert knowledge and medical authority. This
finding, of course, may be demographically variable, as for instance older
people may have different perceptions of doctors and expectations of
medical expertise than their younger counterparts (Lupton 1997), and
people with experience of being prescribed modafinil as a treatment for a
medical disorder may have very different views to those without a clinical
diagnosis. This, therefore, highlights a need for further empirical research
which takes into account some of these other social and demographic
factors.
At present, medical professionals are gatekeepers for modafinil in the UK;
therefore it is ultimately up to this community to decide who has access to
the substance, for which problem it becomes a solution, and the
appropriateness of use (Conrad, 2007). However, the phenomenon of off-
label prescribing indicates that medical professionals are prepared to
prescribe drugs outside of the terms of the products marketing authorisa-
tion, suggesting that they are complicit, perhaps unwittingly, in extending
the remit for the pharmaceutical product in question. In addition to this, the
medical and pharmaceutical expansion of boundaries for treatable condi-
tions and states over recent years has been well documented (Busfield, 2010).
In the case of modafinil, however, the reverse appears to be happening.
Although a range of patient populations as well as a number of non-medical
consumer groups can easily be imagined to whom the drug might appeal as
a therapeutic substance to enhance alertness and other cognitive functions,
there have been recent calls for contraction of legitimate treatment sites
(EMA, 2010). The likelihood of modafinil becoming an OTC substance in
the near future therefore appears more dubious, in Europe at least, in light
of these recent guidelines that restrict its use even as a treatment for some
established medical conditions.
Although safety of drug use is often dismissed as a practical issue that
requires little consideration in the neuroethics discourse, it appears that for
prospective users of the drug, this matter is paramount. One of the most
dominant themes featuring across the interview data was that of disbelief
and scepticism that the pharmaceutical as would work an enhancement
technology, and would not be harmful on a biological, psychological or
Cognitive Enhancement? Exploring Modafinil Use in Social Context 223

social level. Throughout the data collected for this study it was apparent
that there is a strong association between drug taking and illness, addiction,
dependency, and risks to health. This may provide a further barrier to
widespread pharmaceutical use for ‘enhancement’ purposes outside of
medical authority.
As mentioned above, those interviewed for this study were able to think of
many ways in which modafinil might be used outside of medical authority
and could easily imagine a role for it in both the workplace and university
contexts. However, the extent to which use of the substance was thought
about in terms of an enhancement technology – something that would
enable the user to reach a level of performance outside of their normal range –
was limited. Instead, motivations given for using the drug tended to rest on
there being a definite problem (including social, psychological, emotional as
well as physical problems) that the drug could address, a deficit it could
restore, or a way of normalising performance under abnormal circum-
stances. For instance, when configured as a study aid in the student context,
drug use was often considered to be a way to counter a deficit or
impairment, rather than improve cognitive performance beyond a normal
level. This is somewhat at odds with how cognitive enhancement is
understood in ethical discourse: as a way to boost brain power beyond the
normal, take control over ones cognitive abilities, or optimise the brain and
the body for competitive advantage. For the ordinary office worker, call
centre operative, retail assistant or undergraduate student going about their
daily business, a drug to enhance cognition beyond a normal level does not
appear to create as much enthusiasm as it does for members of other
communities – such as those bioethicists who argue strongly in favour of
greater access to drugs like modafinil (Greely et al., 2008; Harris, 2009).
To finish, I want to return to the concept of enhancement and how
cognition enhancing drugs are being positioned in society more generally. As
outlined previously, what we mean exactly when we talk about an
‘enhancement’ technology is often difficult to pin down. The fluidity between
the concepts of therapy and enhancement and, relatedly, those of health and
illness and normality and abnormality, has long been recognised and is often
acknowledged by social scientists and ethicists alike. The data presented in
this chapter suggest that although a therapy-enhancement dichotomy is a
useful heuristic (particularly for moral philosophers and health policy makers
and analysts), it could also be limiting to uphold as it may direct attention
away from other ways in which uses for new technologies can be positioned,
negotiated, realised and resisted by (potential) users in the context of their
daily lives. For instance, when modafinil was configured as a type of safety
224 CATHERINE M. COVENEY

tool, justification for drug use did not rely on the distinction between
therapeutic and enhancing uses of the drug or whether the individual was
healthy or ill. Instead, this was often sought through appeals to wider non-
medical narratives relating to both individual and public safety, which can be
tied into broader notions of the rights, risks and responsibilities that exist in
contemporary society in relation to the governance of both alert and sleepy
bodies (see Williams, 2011).
Empirical research of this kind thus shows how social context can shape
the way in which new technologies are understood (Chatterjie, 2006;
Malacrida, 2004; Rose, 2007) and imagined and highlights the multiple ways
in which drug use and users may be configured across different domains of
social life. How new technologies fit into the existing sociotechnical
networks operating in the everyday lives of potential patients and consumers
is, therefore, paramount to understanding their potential social and ethical
impacts (De Vries et al., 2007; Haimes, 2002; Hedgecoe, 2001). At present,
demand for and desirability of using cognition enhancing drugs may be not
as extensive as has been imagined in ethical debates, at least whilst the
substances available remain prescription drugs under strict medical controls.
How this might change in the future as new knowledge, technologies and
techniques for explaining, intervening and manipulating bodies and brains
are developed and deployed both within and beyond the medical encounter
is open to debate. Perhaps in the future, cognition enhancing drugs will
come to be accepted as part and parcel of everyday life and new uses and
indeed user groups may emerge. Only with the passage of time will we truly
be able to tell if the practice of chemically enhancing normal bodies and
brains flourishes in society and if indeed consumers come to see such
substances as a pharmaceutical fix to resolve their everyday problems.

REFERENCES
Akrich, M. (1992). The description of technical objects. In: W. Bijker & J. Law (Eds.), Shaping
technology/building society: Studies in sociotechnical change, (pp. 205–224). Cambridge,
MA: MIT press.
BMA. (2007). Boosting your brainpower: ethical aspects of cognitive enhancements, A
discussion paper from the BMA, November.
Borup, M., Brown, N., Konrad, K., & Van Lente, H. (2006). The sociology of expectations
in science and technology. Technology Analysis and Strategic Management, 18(3/4),
285–298.
Brown, N., & Michael, M. (2003). A sociology of expectations: Retrospecting prospects
and prospecting reterospects. Technology Analysis and Strategic Management, 15(1),
3–18.
Cognitive Enhancement? Exploring Modafinil Use in Social Context 225

Busfield, J. (2010). A pill for every ill: Explaining the expansion in medicine use. Social Science
& Medicine, 70(6), 934–941.
Butcher, J. (2003). Cognitive enhancement raises ethical concerns. The Lancet, 362, 132–133.
Cahill, M. (2005). The ethical consequences of modafinil use. Penn Bioethics Journal, 1(1).
Cephalon. (2008). Patient information: Provigil Tablets, Prov-011. Cephalon, March 2008.
Chan, S., & Harris, J. (2006). Cognitive regeneration or enhancement: The ethical issues.
Regenerative Medicine, 1(3), 361–366.
Chatterjie, A. (2006). The promise and predicament of cosmetic neurology. Journal of Medical
Ethics, 32, 110–113.
Chatterjie, A. (2009). Is it acceptable for people to take methylphenidate to enhance
performance? No. BMJ, 338, b1956. doi: 10.1136/bmj.b1956 (published June 18, 2009).
Cheshire, W. P. (2008). The pharmacologically enhanced physician. Virtual Mentor, American
Medical Society Journal of Ethics, 10(9), 594–598.
Clarke, A. E., Fishman, J. R., Fosket, J. R., Mamo, L., & Shim, J. K. (2003).
Biomedicalization: Technoscientific transformations of health, illness and US biomedi-
cine. American Sociological Review, 68, 161–194.
Conrad, P. (2007). The medicalisation of society. Baltimore, MD: Johns Hopkins University Press.
Conrad, P., & Potter, D. (2004). Human growth hormones and the temptations of biomedical
enhancement. Sociology of Health and Illness, 26(2), 184–215.
Coveney, C. M. (2010). Awakening expectations: Exploring social and ethical issues surrounding
the medical and non-medical uses of cognition enhancing drugs in the UK. Ph.D. thesis,
University of Nottingham.
Coveney, C. M., Nerlich, B., & Martin, P. (2009). Modafinil in the media: Metaphors,
medicalisation and the body. Social Science & Medicine, 68(3), 487–495.
Daniels, N. (2000). Normal functioning and the treatment-enhancement distinction. Cambridge
Quarterly of Healthcare Ethics, 9, 309–322.
De Vries, R. G., Turner, L., Orfali, K., & Bosk, C. L. (2007). Social science and bioethics:
Morality from the ground up. Clinical Ethics, 2, 33–35.
Dees, R. H. (2004). Slippery slopes, wonder drugs, and cosmetic neurology: The neuroethics of
enhancement. Neurology, 63, 951–952.
DTI. (2005). FORESIGHT: Drug futures 2025? Horizon scan. Commissioned by the Office of
Science and Technology. London: Her Majesty’s Stationery Office.
Elliott, C. (2003). Better than well: American medicine meets the American dream. New York,
NY: W Norton & Co.
EMA. (2010). Questions and answers on the review of medicines containing modafinil,
November 19, 2010, EMA/725532/2010, EMEA/H/A-31/1186.
Escohotado, A. (1999). A brief history of drugs: From the stone age to the stoned age. Rochester,
VT: Park Street Press.
Esposito, M. F. (2005). Ethical implications of pharmacological enhancement of mood and
cognition. Penn Bioethics Journal, 1(1), 1–4.
Farah, M. (2002). Emerging ethical issues in neuroscience. Nature Neuroscience, 5(11),
1123–1128.
Farah, M. (2005). Neuroethics: The practical and the philosophical. TRENDS in Cognitive
Sciences, 9(1), 34–40.
Farah, M., Illes, J., Cook-Deegan, R., Gardner, H., Kandel, E., King, P., y Wolpe, P. R.
(2004). Neurocognitive enhancement: What can we do and what should we do? Nature
Reviews Neuroscience, 5, 421–425.
226 CATHERINE M. COVENEY

Flower, R. (2004). Lifestyle drugs: Pharmacology and the social agenda. TRENDS in
pharmacological Sciences, 25(4), 182–185.
Forlini, C., & Racine, E. (2009). Autonomy and coercion in academic cognitive enhancement
using methylphenidate: Perspectives of key stakeholders. Neuroethics, 2(3), 163–177.
Fukayama, F. (2002). Our posthuman future. London: Profile Books.
Gazzaniga, M. S. (2005). Smarter on drugs. Scientific American Mind, 16(October), 32–37.
Glannon, W. (2006). Neuroethics. Bioethics, 20(1), 37.
Glannon, W. (2008). Psychopharmacological enhancement. Neuroethics, 1, 45–54.
Gore, R. K., Webb, T. S., & Hermes, E. D. A. (2010). Fatigue and stimulant use in military
fighter aircrew during combat operations. Aviation, Space, and Environmental Medicine,
81, 719–727.
Greely, H., Sahakian, B., Harris, J., Kessler, R. C., Gazzinga, M., Campbell, P., & Farah, M.
(2008). Towards responsible use of cognitive-enhancing drugs by the healthy. Nature,
456, 702–705.
Haimes, E. (2002). What can the social sciences contribute to the study of ethics? Theoretical,
empirical and substantive considerations. Bioethics, 16(2), 89–113.
Hall, W. D., & Lucke, J. C. (2010). The enhancement use of neuropharmaceuticals: More
scepticism and caution needed. Addiction, 105(12), 2041–2043.
Harding, G., & Taylor, K. M. G. (1997). McPharmacy medicines. The Pharmaceutical Journal,
226(7130), 56.
Harris, J. (2009). Give students smart drugs on demand to aid study. THES, January 1, p. 10.
Hedgecoe, A. (2001). Ethical boundary work: Geneticization, philosophy and the social
sciences. Medicine, Health Care and Philosophy, 4, 305–309.
Hyman, S. E. (2006). Improving our brains? BioSocieties, 1, 103–111.
Kelley, A., Webb, Catherine, C., Athy, J., Ley, S., & Gaydos, S. (2010). Cognition-enhancing
drugs and their appropriateness for aviation and ground troops: A meta-analysis. Army
Aeromedical Research Lab, Fort Rucker Al Warfighter Performance and Health Div,
December 2010.
Kramer, P. (1993). Listening to prozac: A psychiatrist explores antidepressant drugs and the
remaking of the self. New York, NY: Penguin.
Lakoff, A. (2005). Pharmaceutical reason: Knowledge and value in global psychiatry. New York:
Cambridge University Press.
Lindsay, C. (2005). From the shadows: Users as designers, producers, marketers, distributors
and technical support. In: N. Oudshorn & T. Pinch (Eds.), How users matter: The co-
construction of users and technology. New Bakersville: MIT Press.
Lupton, D. (1997). Consumerism, reflexivity and the medical encounter. Social Science &
Medicine, 45(3), 373–381.
Maher, B. (2008). Poll results: Look who’s doping. Nature, 452, 464–465.
Malacrida, C. (2004). Medicalization, ambivalence and social control: Mothers’ descriptions of
educators and ADD/ADHD. Health, 8(1), 61–80.
Marcus, SJ. (Ed.) (2002). Neuroethics: Mapping the field conference proceedings. New York,
NY: The Dana Foundation.
Martin, E. (2006). The pharmaceutical person. BioSocieties, 1, 273–287.
Martin, P., & Ashcroft, R. (2005). Neuroscience, ethics and society: A review of the field.
Background paper prepared for the 2005 Wellcome Trust Summer School on
‘Neuroethics’, September 2005.
Cognitive Enhancement? Exploring Modafinil Use in Social Context 227

Martin, P., Pickersgill, M., Coveney, C. M., & Williams, S. J. (in press). Pharmaceutical
cognitive enhancement: Interrogating the ethics, addressing the issues. In: F. Fenter
(Ed.), Augmented cognition. Lausanne: EPFL Press.
Morrison, M. (2008). Beyond the perils and promise of human enhancement: The social shaping
of enhancement technologies. eSharp Issue 12: Technology and Humanity (Winter), 1–24.
Murphy, E., & Dingwall, R. (2003). Qualitative methods of health policy research (pp. 76–102).
New York, NY: Aldine de Gruyter.
Müller, U., Steffenhagen, N., Regenthal, R., & Bublak, P. (2004). Effects of modafinil on
working memory processes in humans. Psychopharmacology, 117(1–2), 161–169.
Outram, S. (2010). The use of methylphenidate among students: The future of enhancement?
Journal of Medical Ethics, 36, 198–202.
Parens, E. (Ed.) (1998). Enhancing human traits: Ethical and social implications. Washington,
DC: Georgetown University Press.
Pasquale, F. (2010). Cognition enhancing drugs: Can we say no? Bulletin of Science Technology
Society, 30, 9. 10.1177/0270467609358113
Pieters, T., & Snelders, S. (2009). Psychotropic drug use: Between healing and enhancing the
mind. Neuroethics, 2, 63–73.
Pigeau, R., Naitoh, P., Buguet, A., McCann, C., Baranski, J., Taylor, M., y Mack, I. (1995).
Modafinil, d-amphetamine and placebo during 64 hours of sustained mental work. I.
Effects on mood, fatigue, cognitive performance and body temperature. Journal of Sleep
Research, 4, 212–228.
POST. (2007, June). Postnote – Better brains. Number 285.
Post, S. G. (2000). The concept of Alzheimer disease in a hypercognitive society. In:
P. J. Whitehouse, K. Maurer & J. F. Ballenger (Eds.), Concepts of Alzheimer disease:
Biological, clinical, and cultural perspectives (pp. 235–256). Baltimore, MD: Johns
Hopkins University Press.
Potts, A., Gavey, N., Grace, V. M., & Vares, T. (2003). The downside of Viagra: Women’s
experiences and concerns. Sociology of Health and Illness, 25(7), 697–719.
President’s Council on Bioethics. (2002, April). Distinguishing therapy and enhancement. Staff
Working Paper 7.
Quednow, B. (2010). Ethics of neuroenhancement: A phantom debate. BioSocieties, 5, 153–156.
Randall, D. C., Shneerson, J. M., Plaha, K. K., & File, S. E. (2002). Modafinil affects mood,
but not cognitive function, in healthy young volunteers. Human Psychopharmacology,
18(3), 163–173.
Repantis, D., Schlattmann, P., Laisney, O., & Heuser, I. (2010). Modafinil and methylphenidate
for neuroenhancement in healthy individuals: A systematic review. Pharmacological
Research, 62(3), 187–206.
Rose, N. (2007). The politics of life itself. Princeton, NJ; Oxford: Princeton University Press.
Russo, M. (2007). Recommendations for the ethical use of pharmacologic fatigue counter-
measures in the U.S. military. Aviation, Space, and Environmental Medicine, 78(5),
119–127.
Sahakian, B., & Morein-Zamir, S. (2007). Professor’s little helper. Nature, 450(7173), 1157–1159.
Sample, I. (2004, July 30). MoD researchers to report on military uses of Provigil. The
Guardian.
Schermer, M., Bolt, I., et al. (2009). The future of psychopharmacological enhancements:
Expectations and policies. Neuroethics, 2(2), 75–87.
228 CATHERINE M. COVENEY

Sharma, V. (2011, February 16). Pilot pill project, Pune Mirror. Retrieved from http://
www.punemirror.in/article/2/201102162011021606331644587714a65/Pilot-pill-project.
html
Singh, I. (2005). Will the real boy please behave: Dosing dilemmas for parents of boys with
ADHD. American Journal of Bioethics, 5(3), 34–47.
Singh, I. (2007). Clinical implications of ethical concepts: Moral self-understandings in
children taking methylphenidate for ADHD. Clinical Child Psychology and Psychiatry,
12(2), 167.
Stevenson, F. A., Leontowitsch, M., & Duggan, C. (2008). Over-the-counter medicines:
Professional expertise and consumer discourses. Sociology of Health and Illness, 30(6),
913–928.
Synofzik, M. (2009). Ethically justified, clinically applicable criteria for physician decision-
making in psychopharmacological enhancement. Neuroethics, 2(2), 89–102.
Tannsjo, T. (2009). Ought we to enhance our cognitive capacities? Bioethics, 23(7), 421–432.
Teter, C. J., McCabe, S. E., LaGrange, K., Cranford, J. A., & Boyd, C. J. (2006). Illicit use of
specific prescription stimulants among college students: Prevalence, motives and routes
of administration. Pharmacotherapy, 26(10), 1501–1510.
THES. (2009, January 1). Give students smart drugs on demand to aid study. THES, p. 10.
Turner, D., Robbins, T. W., Clark, L., Aron, A. R., Dowson, J., & Sahakian, B. (2003).
Cognitive enhancing effects of modafinil in healthy volunteers. Psychopharmacology,
165(3), 260–269.
Weiner, K. (2010). Configuring users of cholesterol lowering foods: A review of biomedical
discourse. Social Science & Medicine, 71(9), 1541–1547.
Wheeler, B. (2006, October 26). UK army tested ‘stay awake’ pills. BBC News online.
White, B. P., Becker-Blease, K. A., & Grace-Bishop, K. (2006). Stimulant medication use,
misuse, and abuse in an undergraduate and graduate student sample. Journal of
American College Health, 54(5), 261–268.
Wilkie, A., & Michael, M. (2009). Expectation and mobilisation: Enacting future users. Science,
Technology, and Human Values, 34(4), 502–522.
Williams, S. J. (2011). The politics of sleep: Governing (un)consciousness in the late modern age.
Basingstoke: Palgrave Macmillan.
Williams, S. J., & Martin, P. (2009). Correspondence: Risks and benefits may turn out to be
finely balanced. Nature, 457, 532.
Williams, S. J., Martin, P. A., & Gabe, J. (2011). The pharmaceuticalisation of society? A
framework for analysis. Sociology of Health & Illness, 33(5), 710–725.
Wolpe, P. (2002). Treatment, enhancement and the ethics of neurotherapeutics. Brain and
Cognition, 50, 387–395.
Woolgar, S. (1991). Configuring the user. In: J. Law (Ed.), A sociology of monsters (pp. 57–102).
London: Routledge.
 PART III
NEUROSCIENCE, THEORY
AND SOCIETY
NEUROSCIENCE AND
MEDICALISATION: SOCIOLOGICAL
REFLECTIONS ON MEMORY,
MEDICINE AND THE BRAIN

Simon J. Williams, Stephen Katz and Paul Martin

ABSTRACT

This chapter takes a critical look at the sociological notion of

‘medicalisation’ in relation to recent trends and developments in
neuroscience, neurotechnology and society, taking memory, medicine and
the brain as our prime focus and the disease category of mild cognitive
impairment (MCI) as our empirical case study. Five relational nexuses in
particular are identified as relevant to these developments and debates,
namely the bio-psych nexus, the pharma-psych nexus, the selves-
subjectivity nexus, the wellness-enhancement nexus, and the neuroculture-
neurofuture nexus. We show that developments in memory medicine and
the shifting boundaries of cognitive health, as embodied and expressed in
the case of MCI, shed further valuable light on these issues and the
interconnectivity of these relational nexuses. As an emergent disease and
susceptibility category, MCI illuminates not only the fuzzy boundaries
between normal and abnormal cognitive functioning, but also the working
of neuroscientific, neurocultural and pharmacological interests, which, in
this case, are already claiming MCI as the next locus of enhancing the

Sociological Reflections on the Neurosciences

Advances in Medical Sociology, Volume 13, 231–254
Copyright r 2011 by Emerald Group Publishing Limited
All rights of reproduction in any form reserved
ISSN: 1057-6290/doi:10.1108/S1057-6290(2011)0000013014
231
232 SIMON J. WILLIAMS ET AL.

mind and optimising aging. Thinking both within and beyond medicalisa-
tion challenges us to find new ways to critically understand the ideas about
life and health as they travel, translate or migrate from (neuro)scientific
and clinical spheres to cultural life and patient experience.

Keywords: Brain; cognitive health; enhancement; medicalisation;

medicine; memory; neuroscience

INTRODUCTION
Recent decades have witnessed the rapid ascendancy of the neurosciences as
a leading frontier of knowledge in the twenty-first century, with many
potential (near) future applications both within and outside of the sciences
themselves. Old dilemmas and new debates regarding minds, brains, bodies
and selves are raised by these developments that include: ethical questions
about interventions designed to mend, manage, modify or manipulate our
emotions, thoughts and behaviours; new accounts of addiction and depen-
dency; and, most importantly for our purposes, prospects and consequences
of reconfigured boundaries between normality and abnormality, health and
illness, treatment and enhancement.
On the one hand, developments within the neurosciences are presented by
their advocates as holding considerable promise as new ways of improving
or optimising the human condition. On the other hand, they remain contested
or controversial on a variety of counts, including charges of neurogenetic
determinism, fears of expansive mind control through ‘neuromarketing’ and
ethical critiques of brain scanning applications in criminology. Sociological
engagements with the neurosciences to date, however, have been relatively
limited both in mainstream sociology and in its health and medical sub-
fields. So far notable contributions have been developed out of neo-
Foucauldian scholarship, science and technology studies (STS), and
embryonic strands of so-called neurosociology (which draw on the
neurosciences in various ways to deepen sociological forms of explanation
and understanding) within areas such as the sociology of emotion (Franks,
2010; Franks & Smith, 1999). Although a review of these areas is discussed
elsewhere in this volume (see chapters by Johnson and Littlefield, and von
Scheve, this volume), our aim in this chapter is to examine the salience and
significance of the sociological concept of medicalisation and, at the same
time, explore how new ideas stemming from the neurosciences are inspiring
Sociological Reflections on Memory, Medicine and the Brain 233

sociological critique to go beyond the conceptual framework popularised by

medicalisation, taking memory medicine and the problem of mild cognitive
impairment (MCI) as our case study.
Three key questions inform the discussion that follows: To what extent
does the sociological concept of medicalisation retain explanatory value in
relation to recent trends and developments in the neurosciences and
neuroculture (a concept we elaborate below)? Reciprocally, to what extent
do such trends and developments invite us to rethink or go beyond existing
medicalisation debates? Finally, what light do recent developments in
memory medicine and the shifting boundaries of cognitive impairment shed
on these issues?

MEDICALISATION THESIS

Birthed in the womb of medical sociology in the early 1970s, medicalisation

is something of a sociological success story, given its considerable export
status and currency as a ‘diagnosis’ of our times. Epistemologically,
however, medicalisation is less of a theory than a thesis: a descriptive term
which confirms its status as the explanandum rather than the explanans and
denotes the translation or transformation of something of previously non-
medical status into a matter under medical jurisdiction and control. The
medicalisation thesis provides the logic by which we may encompass a
problem which is ‘‘defined in medical terms, described using medical
language, understood through the adoption of a medical framework, or
‘treated’ with a medical intervention’’ (Conrad, 2007, p. 5).
In most sociological writing, medicalisation has been characterised as
occurring at different levels (i.e. conceptual, institutional and interactional),
involving gains as well as losses depending on the particular case and
context in question, and medicalisation may be partial rather than total.
Most importantly, medicalisation does not necessarily imply passivity on the
part of patients or the public and can be bi-directional, fluctuating between
medicalisation and de-medicalisation. Relevant to this chapter are recent
sociological debates regarding the changing nature and dynamics of
medicalisation, particularly recent critical rethinking that points to cases
of past and present medicalisation as outright ‘disease mongering’, a notion
shared by many but most obviously associated with the work of Ray
Moynihan, whose most recent work focuses on the pharmaceutical making
of ‘female sexual dysfunction’ (Moynihan & Mintzes, 2010). Here blame is
firmly pointed at the pharmaceutical industry, albeit in association with
234 SIMON J. WILLIAMS ET AL.

doctors, patients, marketers and the media, which not only produces
and distributes drugs, but also the very disorders for their drugs to treat
(Blech, 2006; Healy, 2006; Moynihan, 2002; Moynihan & Cassels, 2005;
Moynihan, Health, & Henry, 2002; Moynihan & Henry, 2006). From social
anxiety disorder (Scott, 2006) to baldness (Szymczak & Conrad, 2006) and
sexual dysfunction (Katz & Marshall, 2002; Marshall & Katz, 2006), a
variety of conditions are argued to be manufactured with drug-market
maximisation rather than public health in mind. Thus disease mongering is
an argument that sharply directs attention to the illegitimate creation and
expansion of diagnostic categories that should concern patients, citizens or
consumers, given the huge profits to be made from telling and selling people
the idea that they are sick.
Although not all forms of medicalisation escalate into disease mongering,
these critics’ focus on the machinations of the pharmaceutical industry
highlights the role of other important players besides doctors (Abraham,
2009a, 2009b) and hence raises important questions for current sociological
debates on the medicalisation of society. Conrad (2007, 2005), for example,
recognises that doctors, while still at the definitional centre of medicalisation,
are no longer the prime drivers of these processes given that biotechnologies,
consumers and, especially, markets now play significant roles – see also
Conrad, Mackie, and Mehrota (2010) on the costs of medicalisation.
As the critical pharma-lens expands, related sociological concepts such as
geneticisation and pharmaceuticalisation also come into view here as having
variable or contingent relations to medicalisation. Relations between genetics,
geneticisation and medicalisation for instance, as Shostak, Conrad, &
Horwitz, 2008 have recently argued, are not always reciprocal or self-
sustaining. Rather, taking three conditions (depression, homosexuality and
susceptibility to environmental exposures) for which at least one putative
gene or genetic marker has been identified, they find a ‘‘lack of consistent fit
among genetics, geneticization and medicalization’’, which demonstrates
that ‘‘genetic information takes its meaning from its embeddedness in
different moments in sequences of events and their social structural
consequences’’ (Shostak et al., 2008, p. S310). Similarly, while processes
of medicalisation and pharmaceuticalisation frequently converge or overlap,
pharmaceuticalisation is both a more specific term of reference (given it
refers to drugs as opposed to biomedical interventions in general), and
something that may occur in the absence of any significant degree of
medicalisation, as in cases of lifestyle enhancement drugs among the
‘healthy’ who suffer from no medically defined need, disease or disorder
Sociological Reflections on Memory, Medicine and the Brain 235

(Fox and Ward, 2008; Williams, Martin, & Gabe, 2011a, 2011b). In short,
medicalisation and pharmaceuticalisation do not necessarily implicate each
other; rather, they intersect in contingent and unpredictable ways, especially
where one generation or type of drugs is likely to be replaced by another in a
succession of pharmaceuticalisation.
Thinking about the status of medicalisation in these ways is important to
this study because, as we shall argue below, while medicalisation remains a
highly useful sociological concept with which to analyse and reflect upon
how the neurosciences contribute to the shaping of new disease categories
and health agendas, there is also a need to trace this shaping process as it
migrates outside the laboratory and clinic into the wider realms of popular
culture and public life through popular therapy, advice literature and
lifestyle products. To advance this point further, we consider the value
of ‘biomedicalisation’ and how it contributes to understanding the
neuroscientific enterprise in sociological terms.

BIOMEDICALISATION BEYOND MEDICALISATION

Clarke, Fishman, Fosket, Mamo, and Shim (2003) have argued that
‘biomedicalisation’ rather than medicalisation is today perhaps the more apt
term of reference, given the new technological and biosocial trends in both
the organisation and practices of contemporary biomedicine which have
occurred since the mid-1980s, implemented largely through the integration
of technoscientific innovations. Biomedicalisation, in this respect, captures
the increasingly ‘‘complex, multisited, multidirectional processes of medi-
calisation’’ as configured or reconfigured through the ‘‘new social forms
of highly technoscientific biomedicine’’ (p. 161). This historical transforma-
tion from medicalisation to biomedicalisation is in turn, they suggest,
characterised as a transformation from control over biomedical phenomena
(e.g. as in the treatment of various problems) to transformations of them (as
in cases of customisation or enhancement, of which more below). Clarke
and colleagues highlight five key interactive processes as both product and
facilitator of these biomedicalisation processes: (1) the political economic
reconstitution of the vast sector of biomedicine; (2) the focus on health itself
and the elaboration of risk and surveillance biomedicines; (3) the increasingly
technological and scientific nature of biomedicine; (4) transformations in the
production, distribution and consumption of biomedical knowledges and
management of medical information management and (5) the production of
236 SIMON J. WILLIAMS ET AL.

new embodied properties and technoscientific identities (p. 161). These

‘shifts’ however, as these authors themselves make clear, are ‘shifts of
emphasis’ and ‘‘can and do continue temporally and spatially, if unevenly.
Innovations thus are cumulative over time such that older approaches are
usually available simultaneously somewhere, while new approaches and
technoscientifically based alternatives also tend to drive out the old over
time’’ (p. 184).
Biomedicalising shifts, as such, inspire a more sustained attempt to think
‘beyond’ traditional or even existing sociological notions of medicalisation.
This is evident in the work of other neo-Foucauldian writers such as Nikolas
Rose, who emphasise the power and influence of (bio)medicine over all our
lives. Medicalisation, Rose (2007a) argues, has ‘‘had an even more profound
effect on our forms of life’’ than most commentators and critics of
medicalisation realise. It has, quite simply, ‘‘made us what we are’’ (p. 700)
through three kinds of practices: (1) medical practices, including public health
interventions, hygienic measures, vaccination programmes as well as the
diagnosis and treatment of disease, which have ‘‘modified the very form that is
the contemporary human being’’ (idem, p. 701); (2) social and cultural
practices by which medicine is a key resource that, in countless ways, shapes
the relations of meaning through which we experience the world; (3) self-
governing practices whereby medical expertise plays a critical role in
‘‘governing the ways we conduct ourselves’’ (ibid.). Given these practices,
Rose concludes that we need ‘‘more refined conceptual methods and criteria of
judgement to assess the costs and benefits of our thoroughly medical form of
life’’ (idem, p. 702, our emphasis). This no doubt explains the absence in Rose’s
subsequent writings on the The Politics of Life Itself (2007b) of any significant
mention of traditional or even current sociological notions of medicalisation.
Instead we find, alongside familiar Foucauldian notions of biopower and
biopolitics, new hybrid concepts designed to capture these contemporary
trends and transformations in biomedicine, power and subjectivity in the
twenty-first century; from biological citizenship and biosocial communities, to
biocapital and biovalue (see also Gibbon & Novas, 2008).
Although it is not our intention to critique any one of these recent
theoretical strands, we make reference to them in order to highlight that new
sociological concepts such as ‘biomedicalisation’, ‘biological citizenship’ and
‘biosociality’ are part of a rethinking of ‘medicalisation’, one that goes
beyond existing sociological concepts to chart recent technological
developments whereby the ‘bio’ and the ‘social’ are being renegotiated.
Moving forward from this conceptual background, we next consider what
further light current trends in neuroscience might cast on these debates, and
Sociological Reflections on Memory, Medicine and the Brain 237

to what extent they too call for new sociological ways of thinking beyond
medicalisation.

NEUROSCIENCE, NEUROCULTURE
AND NEUROFUTURES

At the outset, neuroscience is a vast, heterogeneous enterprise, and hence is

best thought of in the plural rather than the singular; that is, as the
neurosciences. They, in turn, are informed and supported by multiple inputs
from biochemistry, genetics, psychology, psychiatry and pharmacology,
along with collaborations from biomedical engineering and imaging
sciences, and information and computer sciences. Recent years have
witnessed a burgeoning of other hybrid fields aligned to the neurosciences,
such as social neuroscience, neuroeconomics, educational neuroscience,
neurodidactics, neuromarketing, neuropsychoanalysis, neuroaesthetics and
neurotheology. At the same time, a parliament of voices has also emerged in
response to these trends articulating what we might call a more
‘neurosceptical’ position, given their penchant for deflating some of the
more exaggerated claims made in the name of the ‘neuro’ today. At the very
least, these critics valuably remind us of the limits of much ‘‘neuro-talk’’
(Crawford, 2008), if not ‘‘neuro-trash’’ (Tallis, 2009), particularly in its
reception in the wider realms of popular culture, and the fact that for all the
advances in neuroscience in recent years, the mysteries of cognitive plasticity
and human consciousness remain.
How then, these complexities and caveats notwithstanding, are some of
the recent trends in the neurosciences and their associated cultural
developments, pertinent to sociological debates on the medicalisation or
biomedicalisation of society? Our answer to this question can be
summarised in terms of the five key relational nexuses discussed later.

Bio-Psych Nexus

Although the neurosciences do not necessarily deal with psychological

phenomena, they both reflect and reinforce the shift towards more biological
understandings of mental life and social behaviour in general and mental
illness, abnormality or pathology in particular, including various forms of
substance addiction, obsessive and antisocial behaviour. Rose (2007b)
speaks here of a ‘‘reshaping of the psychiatric gaze’’ in diverse fields of
238 SIMON J. WILLIAMS ET AL.

thought and practice (p. 198), as previous psychological theories of

pathogenesis are overshadowed by neurochemical and neuropathological
hypothesis and research which effectively bypass notions of the mind in
favour of the brain – a ‘‘neuromolecular gaze’’ indeed has been seen as
evident from the 1960s onwards (Abi-Rached & Rose, 2010, pp. 12–13). At
stake here, is a world densely populated by neurochemicals, drugs,
disorders, digital scanning devices and other tools and technologies, all
with the ‘brain in mind’. When ‘‘mind seems visible within the brain, the
space between person and organ flattens out-mind is what brain does’’
(Rose, 2007b, p. 198). And normal brains, as they are becoming collectively
categorised and more elaborately imaged, are assumed to represent normal
minds and persons, as increasingly more human attributes become folded
into neurocognitive spaces. To the extent then these developments in the
neurosciences constitute a significant part of contemporary transformations
in bioscience and biomedical power this lends further support to the
foregoing arguments regarding the historical transition from medicalisation
to biomedicalisation.

Pharma-Psych Nexus

The bio-psych nexus is closely bound up with contemporary molecular

visions of life in medicine, including psychiatric research and practice, in
which the specific molecular or neurochemical basis of both diagnosis and
drug action is now increasingly emphasised. Into this nexus, psychophar-
maceuticals are a prevalent, powerful and problematic agent, bolstered by
their marketing and idealisations of hope and chemical power to affect the
brain in various ways. Whether via brain scans or genetic testing, many
pathways through the brain, Rose comments, ‘‘seem to end in the use of
psychopharmaceuticals’’ (Rose, 2007b, p. 209). The huge growth of
pyschopharmaceutical markets in recent decades includes key growth areas
in anti-depressant selective serotonin reuptake inhibitors (SSRIs) and
psychostimulants such as Ritalin and Adderall for attention deficit/
hyperactivity disorder (ADHD). By 2005, for example, some 27 million
Americans – 10% of the adult population – were taking antidepressants,
mostly SSRIs, at an annual cost of more than $10 billion (Barber, 2008;
Greenberg, 2010; Olfsun & Marcus, 2009). Prescription cost analysis data
for England are also telling on this count, with a 95% increase in the total
number of anti-depressants sold since 1998 (from just under 18.5 million to
nearly 35 million by 2008), and a 34% increase in SSRI prescriptions since
Sociological Reflections on Memory, Medicine and the Brain 239

2004 (14.3–19.4 million) (Mental Health Foundation, 2010). Most troubling

is that many of the new generation of psychopharmaceuticals ‘treat’
disorders and illnesses whose boundaries are poorly defined and whose
coherence and very existence are matters of dispute. The critique, recalling
Kramer (1994), is that these new so-called forms of ‘cosmetic psychophar-
macology’ claim to not so much mask or even modify as restore or realise
one’s self, through corrections to supposed neurochemical ‘imbalances’ in
the brain. These developments, then, invite further theoretical reflection and
possible conceptual innovation in relation to existing medicalisation-
biomedicalisation debates. In particular, they bring to light the importance
of processes of pharmaceuticalisation (Williams et al., 2011a, 2011b), or in
this particular case neuropsychopharmaceuticalisaton. Pharmaceuticalisa-
tion in this respect may be a key part of biomedicalisation, but not all cases
of biomedicalisation of course involve pharmaceuticalisation. Pharmaceu-
ticalisation, nonetheless, may also potentially extend ‘beyond’ traditional or
existing sociological notions of medicalisation thereby adding further
complexities and underlying the value of any such analytical distinctions.

Selves-Subjectivity Nexus

A key consequence of recent developments in neuroscience and neuro-

technologies is how they potentially shape our identities and sense of
ourselves, and the sort of person we take ourselves to be. Rose (2007b)
claims that we are becoming ‘neurochemical selves’ and suggests that a
‘‘neurochemical sense of ourselves is increasingly layered onto other, older
senses of the self, and invoked in particular settings and encounters with
significant consequences’’ (pp. 222–223). The hallmark of the neurochemical
self, however, is its plasticity, whereby capacities, moods, desires and
behaviours affiliated with specific anomalies in brain function are seen as
receptive to smart drugs that directly target such anomalies (see also Fein’s
chapter, this volume, on neurochemical versus neurostructural selves).
Cognitive powers, traditionally located between and across the spaces that
bridge internal/external, organic/psychological and mind/brain processes,
are now biologically confined to special neurological zones for purposes of
being understood and intervened upon in ways that transform neurological
problems into personal and sometimes existential problems. However, this
style of thinking differs from medicalising and normalising discourses
because there are no real standards for cognitive fitness, only an expanding
variability of correlations between brain, mind, behaviour and person.
240 SIMON J. WILLIAMS ET AL.

Empirical evidence on these issues underlines the complexities and

contingent nature of neurochemical understandings of selfhood and
collective forms of activism around biosocial issues (see Fullagar, 2009;
Gibbon & Novas, 2008; Maasen & Sutter, 2007; Pickersgill, Cunningham-
Burley, & Martin, 2011), sometimes with considerable ambivalence
regarding any such identifications in contested fields such as mental illness,
where biogenetic and neurochemical explanations of conditions such as
depression or anxiety, autism or antisocial personality disorder may
constitute both a welcome resource or relief and/or a major point of
resistance (see Barr & Rose, 2009; Martin, 2007; Pickersgill, 2009). Again
what we see here then are the ways in which developments in the
neurosciences are engendering new debates and concepts both within and
beyond existing notions of medicalisation regarding questions of subjectivity
and selfhood. To the extent that the neurosciences inevitably touch on long-
standing notions of free will, choice, mood, affect, desire, behaviour and so
on, then they clearly harbour the power or potential to shape the ways we
come to think about ourselves in sickness and in health. However, on the
basis of the albeit limited empirical evidence to date, ambivalence is a
characteristic feature of any such identifications and further research is
clearly needed regarding the salience and significance of any such concepts,
and the conditions with which these biological or neurological forms of
sociality and selfhood both do and do not materialise.

Wellness-Enhancement Nexus

The reference to ‘cosmetic psychopharmacology’ above suggests a realm of

professional and commercial uses of psychopharmaceuticals to enhance
particular forms of function and performance amongst healthy as well as
unhealthy people. Current commentators and critics cite the issue of
enhancement as central to medical, cultural and ethical concerns about
biosocial technologies because of their redefining of normal standards of
health (Harris, 2007; Hogle, 2005, 2007; Kaufman, Shim, & Russ, 2004;
Miller & Wilsdon, 2006; Schermer, Bolt, de Jongh, & Olivier, 2009; Turner &
Sahakian, 2006). Enhancement is commonly defined as that which
‘‘improves human functioning beyond what is deemed necessary to sustain
good health’’ (DeGrazia, 2005, p. 263), or more to the point, ‘‘enhancements
are upgrades’’ (Hogle, 2005, p. 703). Thus, enhancement as an ideal creates
an indeterminate set of boundaries between itself and legitimate treatment,
as well as between the meaning of health and wellness, and disorder and
Sociological Reflections on Memory, Medicine and the Brain 241

illness. As such it shakes up the certainty of critique offered by the

medicalisation thesis because of the new spaces it opens between these
boundaries and thus inspires us to once again think beyond medicalisation
as a determinant force. To the extent that neuropsychopharmaceuticals are
now starting to be used for enhancement purposes amongst the healthy (in
the absence of any medically defined need or disorder) then this points to
actual or potential processes of psychopharmaceuticalisation ‘beyond’
medicalisation, at least as traditionally defined and formally understood
(Williams et al., 2011a, 2011b). Although not all cases of medicalisation or
biomedicalisation involve pharmaceuticalisation, not all cases of pharma-
ceuticalisation involve medicalisation, as this new wellness-enhancement
nexus suggests.

Neuroculture-Neurofuture Nexus

At this nexus broader questions arise concerning the significance of

neuroscientific ideas and practices within wider contexts of popular culture
and everyday life. We may in this respect speak of an emerging neuroculture
(Vidal, 2009) which bridges scientific expertise on the brain, popular cultures
of the body and neo-liberal politics of the self (Maasen & Sutter, 2007; Rose,
2007b; History of the Human Sciences, 2010), and which, despite the
uncertainty of the knowledges that legitimate it, tells us that mental life can
be understood, visualised, mapped, maintained, managed, improved and
even enhanced. Contemporary neuroculture can be thought of as an
agglomerate of dynamically related and mutually reinforcing fields, tools,
technologies and evidence, which connect long-standing issues and debates
regarding mind, body, brain, will, consciousness, intentionality, subjectivity,
affect and personhood within new contexts and social forces (cf. Martin &
Ashcroft, 2005). Neuroculture is also largely promissory in character
because of the role played by scientific and public expectations in the
mobilisation of various utopian and dystopian futures, including futures
past, present and yet to come. In other words, expectations become
articulated and amplified in neurocultural ways that frame the construction
of various neurofutures, including both the ‘‘retrospecting of prospects’’ and
the ‘‘prospecting of retrospects’’ (Brown & Michael, 2003; see also Brown,
2003). These together constitute mutually binding visions, obligations and
communities of promise within which various neurofutures are worked on
and perhaps realised (Martin, Brown, & Kraft, 2008). Here, then, within this
latter neuroculture-neurofutures nexus, we glimpse something of the wider
social and cultural significance of the neurosciences today. To the extent
242 SIMON J. WILLIAMS ET AL.

that these very processes and power dynamics are both actively reproduced
and reconfigured within popular and consumer culture, this in turn invites
further sociological reflections on what Kroll-Smith (2003) has usefully
referred to as the ‘extra-institutional’ dimensions and dynamics of
biomedicalisation. This for our purposes includes the ‘rhetorical authority’
of the contemporary brain sciences well beyond the institutional anchors of
the laboratory or clinic.
To summarise, these five nexus points illustrate some of the main
contours of contemporary neuroscience and the various hybridised and
popular forms of authority and expertise which have been associated with it
and the focalisation on the brain in general. These connect to current
sociological debates on the medicalisation or biomedicalisation of society
and call for us conceptually to innovate and move ‘beyond medicalisation’
in order to capture some of the complexities and dynamics of science,
medical and popular cultures. To the extent indeed that the neurosciences
foster new kinds of biomedical, pharmaceutical and social relationships
around the five nexus points identified, they also lay the basis for how
sociologists might critically engage with the ‘neuro’ in science, medicine
and culture. To demonstrate this point further, we turn briefly to the case
of MCI.

NEUROCULTURE AND MILD

COGNITIVE IMPAIRMENT

It is an understatement to say that memory skills are essential in the

contemporary world, not only in our ‘information society’ where digitised
technologies of vast memory storage have become a wondrous model of
endless capacity, but also in our ‘ageing society’ where fears of memory loss
are justifiably a growing collective concern. Indeed, memory loss and
cognitive impairment not only indicate a possible slide into old age
dependency and decline, but also represent a potential loss of successful
selfhood and life-long social identities. Because dementia is both a disease
and an existential condition, forgetting, in the neuroculture of healthy
ageing, is a sign of failure. Indeed, Stephen Post suggests that we are living
in a ‘‘hypercognitive society’’ of often consistently high expectations of
cognitive performance. Thus he asks: ‘‘Were ours not a hypercognitive
culture, would we fear dementia enough to label it AD [Alzheimer’s disease]
at a certain threshold?’’ (Post, 2000, p. 249); that is to say, is memory loss,
even where it approaches dementia, really the problem, or does a good part
Sociological Reflections on Memory, Medicine and the Brain 243

of the problem lie in the hypercognitive expectations of cognitive (and often

ageless) performance that validates and isolates dementia and even older
notions of senility within an AD model (see Ballenger, 2006a, 2006b)?
This has also led to some confusion between acceptable levels of normal
forgetfulness and impairment that has surfaced in the debates around
cognitive enhancement and MCI in older adults. As a recent disease
category, generally problematised since the 1960s but more specifically
defined during the past decade, MCI articulates geriatric care with
neuroscientific and pharmacological advances, cultural anxieties about
cognitive deficits and ethical controversies about cognitive enhancement.
What is of interest here is how MCI presents an ideal opportunity to ground
the five nexuses outlined above in a post-medicalisation critique of the
determinants of health.
MCI is a label that has been developed over the past decade and used to
describe individuals that exhibit some mild cognitive deficits that do not
meet diagnostic criteria for dementia, but who might be in a transitional
stage between normal cognitive aging and dementia. Given that individuals
with MCI have a greater than normal risk of progressing to dementia, there
is much interest in treating them as early as possible. Figures vary as to the
percentage of individuals diagnosed with MCI who go on to develop
dementia from lower (Bruscoli & Lovestone, 2004) to higher numbers
(Bennett, Schneider, Bienias, Evans, & Wilson, 2005), as do the diagnostic
criteria for different sub-types of MCI. Various terms have been put forth to
describe MCI in older adults (Tuokko, Frerichs, & Kristjansson, 2001);
however, the criteria, originally outlined by Petersen et al. (1999) have been
the most influential to date: memory complaint; normal activities of daily
living; normal general cognitive functioning; abnormal memory for age and,
not demented (Petersen et al., 1999, p. 304). In recognition of the fact that
these criteria focused exclusively on memory impairment and that deficits
can and do occur in other aspects of cognitive functioning (e.g. attention,
language, visuospatial functioning, etc.), the MCI label was subsequently
divided into three basic subtypes: Amnestic MCI, multiple domains slightly
impaired MCI, and single non-memory domain MCI (Petersen et al., 2001).
Despite the formulation of these three basic subtypes of MCI, however, the
vast majority of research continues to target Amnestic MCI, although the
original five criteria are still used to define Amnestic MCI. Well-accepted
criteria for the other two variants of MCI are still lacking.
Before MCI became a mainstream diagnostic category, the typical
definition of impairment on cognitive tests was performance of two standard
deviations (SDs) below normal. Now the dominant view stipulates that
244 SIMON J. WILLIAMS ET AL.

there must be objective memory impairment corresponding to 1.5 standard

deviations below normal (Petersen et al., 1999), based on 1.5 SDs becoming
an earlier point of intervention in the disease process. In other words, rather
than waiting until a person’s memory deficit reaches a clinical threshold of
2 SDs, clinicians believe it is better to catch them earlier, hence the definition
of pathological memory has moved one step closer to normalcy. Other
ramifications of these shifting standards are that normal cognitive
behaviours associated with ageing memories may also be deemed as
dysfunctional (Leibing, 2009). As debate regarding the inclusion of MCI in
the American Psychiatric Association’s Diagnostic and Statistical Manual of
Mental Disorders grows, so too do questions about the status of MCI as a
valid disease category. Critics have also debated the clinical usefulness of
MCI labels (Philosophy, Psychiatry, & Psychology, 2006; Katz & Peters,
2008; Moreira, May, & Bond, 2009) and their medicalising effects
(Whitehouse & Juengst, 2005; Whitehouse & Moody, 2006).
Yet the most common object of criticism is whether or not drugs should
be developed and approved for use in treating MCI. At this time, while there
are no drugs approved specifically for MCI, some individuals with MCI
(27% in one study based on questionnaires sent to 314 medical centres) are
being prescribed cholinesterase inhibitors off-label, despite the lack of
evidence from randomised controlled trials (RCTs) that these are helpful
(Frisoni, Canu, Geroldi, Zanetti, & Zacchi, 2006). In fact, the data from the
limited number of RCTs on MCI show that there is no benefit from taking
cholinesterase inhibitors. As the distance between MCI and normal
cognitive skills narrows, MCI becomes more interesting and available for
experimentation with drugs, some of which were initially developed to treat
dementia. In other words, MCI has become a new medical category of ‘at-
risk’ susceptibility that bridges dementia drugs with some aspects of anti-
ageing culture where they mark a border between healthy and dependent
ageing, and where signs of cognitive loss and decline can be seen as portals
into old, old age.
Furthermore, this development is occurring despite a paucity of consistent
research because neuroscientific and pharmacological interests, as the
discussion above indicates, are already claiming MCI as the next locus of
enhancing the mind and optimising ageing. From 2001 to 2006 in the United
States, cholinesterase inhibitor Aricept (for AD) sales rose by 93.9%, while
in the period 2000–2007 prescriptions for the drug have doubled. In a
ranking of the two hundred top selling drugs, Aricept has moved from 68th
in 2001 to 44th in 2006, shadowing the steep rise of Viagra sales (http://
Drugtopics.modernmedicine.com/Topþ200þDrugs). One can imagine that,
Sociological Reflections on Memory, Medicine and the Brain 245

if the goal is to implement neuro-protective treatment interventions for AD

as early as possible to MCI-susceptible adults, clinical trials will soon be
performed with increasingly healthy people who may exhibit no cognitive
symptoms of impairment. As Graham and Ritchie note,
Our concern is not only that modest improvement might be overstated, but that the hard
sell has proved distasteful to a number of clinicians and may have the adverse effect of
discrediting a potentially useful treatment. The feasibility of wide scale treatment
extended to an incipient group depends on the development of more precise diagnostic
criteria. Premature application of MCI criteria for the identification of subjects for
clinical trials is likely to lead to the inclusion of high numbers of noncases. (Graham &
Ritchie, 2006, p. 39)

The concerns and contentions in turn find further empirical support

through reference to data on clinical trials for drugs and supplements for
MCI over the past decade. These, as noted earlier, have included the use of
medicines already licensed for the treatment of AD, completely new
chemical entities that are thought to modulate memory function (most
notably the Ampakines which take their name from the glutamatergic AMP
receptor) and putative drugs based largely on natural products, and a small
number of dietary supplements. These are summarised in Table 1, which
describes 27 clinical trials explicitly for the treatment of MCI on the clinical
trials section of the database NewsAnalyzer (www.dmsdatasystems.com/
dms/home.jsp) of which 21 were conducted in the United States. The first
group of some 18 conventional drug-based clinical trials was initiated
between 2002 and 2008 involving 14 different compounds. Nearly all of
these were established to evaluate therapies to treat MCI as a discrete
therapeutic category and 13 were sponsored by industry, including large
companies such as Novartis, Pfizer and Johnson & Johnson, as well as by
smaller specialist biotechnology companies such as Allon Therapeutics and
Cortex Therapeutics. It is notable that all but four of these trials were mid-
to late-stage; that is, after Phase I, which suggests a relative maturity in
efforts to find a treatment for MCI. Two drugs in particular were the subject
of multiple trials; Donepezil (trade name Aricept) and Galantemine (trade
name Nivalin or Reminyl), both of which are already licensed to treat AD.
In addition there were four trials for what might be called putative drug
candidates. These involved compounds such as nicotine, melatonin and
Ginkgo Biloba that have established pharmaceutical properties, but are
currently either not formally licensed by regulatory authorities as medicines
or are of only minor significance therapeutically. The screening of natural
products such as these is a well-established route within the pharmaceutical
industry for identifying new active compounds and all but one are being
 Table 1. Clinical Trials of Drugs and Supplements for MCI 2000–2010.
Date Public Sponsor Private Sponsor Substance Summary Clinical Phase/ 246
Country (if Non-
USA)

Drug
August 2008 National Institute – Pioglitazone Comparison of drug v exercise in Phase II
Ageing improving memory or
preventing decline
January 2008 Yale University – Atomoxetine Treatment of mild to moderate Phase n/a
cognitive difficulties during
menopause
December 2007 – Novartis AQW051 Treatment of MCI Phase II
November 2007 – UCB Piracetam Treatment of MCI Phase n/a
June 2007 – Pfizer Donepezil Treatment of MCI Phase n/a
(Aricept)
January 2007/ – Allon AL-108/ Treatment of MCI. AL-208 is Phase II
November 2006 Therapeutics AL-208 different formulations of same
drug
July 2006 – Accera Katasyn Effect on older adults with Phase II
‘normal’ memory loss
March 2006 University of – Levodopa Efficacy in boosting learning and Phase IV Germany
Muenster memory
February 2006 – Johnson & Galantamine Treatment of MCI Phase unknown
Johnson
February 2006 – Eisai/Pfizer Donepezil Treatment of MCI Phase IV
(Aricept)
November 2005 University of – TH9507 Human growth hormone Phase II
Washington releasing hormone (GHRH) to
improve cognitive function
October 2005 National Institute – Rosiglitazone Treatment of MCI Phase II
Ageing
October 2005 – Johnson & Galantamine Treatment of MCI Phase III
SIMON J. WILLIAMS ET AL.

Johnson
 September 2005 – Servier S18986 Treatment of MCI Phase II France
September 2005 – Pfizer Donepezil Treatment of MCI Phase IV
(Aricept)
August 2005 – Novartis Rivastigmine Treatment of MCI Phase III
December 2004 – Eisai/Pfizer Donepezil Treatment of MCI Phase IV
(Aricept)
June 2002 – Cortex CX516 Treatment of MCI Phase II
Phramceuticals

Putative drugs
January 2008 Louisiana State – Curcumin Efficacy of curcumin in treating Phase n/a
University MCI
October 2007 Assaf-Harofeh – Melatonin Efficacy in delaying cognitive Phase II Israel
Medical Centre decline
March 2007 – Milsing d.o.o. Ginkgo Biloba Efficacy of plant extract in Phase IV
treatment of MCI Croation firm
Septtember 2004 National Institute – Nicotine Treatment of MCI Phase I
Ageing

Supplement/neutriceutical
July 2010 University of Oxford – Vitamin B Use of vitamin to prevent MCI Phase n/a the UK
May 2009 University of – Memory XL Use of vitamin to improve Phase n/a
Oklahoma memory & behaviour. Patented
by U. Mass
August 2008 University of – Fish oil Use of fish oil to prevent Phase n/a the
Sociological Reflections on Memory, Medicine and the Brain

Wageningen cognitive decline Netherlands

January 2008 University of – Fruit juice Effect of supplemented fruit Phase n/a
Cincinnati juices on memory
January 2008 Rush University – Cerefolin NAC Comparison of Cerefolin v Phase n/a
multivitamin in levels of
substances associated with
health of neurons. Patented by
Pamlab – sold as ‘brain food’

Notes: All trials relate to patients categorised as having MCI. Several trials also include patients with Alzheimer’s disease.
247
248 SIMON J. WILLIAMS ET AL.

conducted in academia. Finally, five trials for nutritional supplements and

natural dietary ingredients such as vitamin B, fish oil and fruit juice were
also being investigated in clinical trials for their effects in improving memory
or halting cognitive decline. Each of these trials started after 2008. In
contrast, no commercially sponsored clinical trial has started since 2007-
perhaps reflecting the widespread crisis in central nervous system (CNS)
drug development in which many established pharmaceutical companies are
currently withdrawing due to lack of progress in getting new products onto
the market (Cutler et al., 2010).
What is particularly noticeable about six of these trials is the extent to
which they either specifically target or include in one arm of the trial subjects
who are healthy, with them variously described as older adults, older adults
with ‘normal’ age-related memory loss, or simply adults in later life,
including those with the rather vague category of ‘memory complaints’. In
particular, two of these trials are looking at the enhancement or
neuroprotection of memory and learning in healthy adults, and another is
focused on the treatment of mild to moderate cognitive difficulties during
menopause. It would therefore seem that these trials are also seeking to blur
the boundary between the more tightly defined diagnostic category of MCI
and much looser ideas of normal age-related memory decline. Furthermore,
several of them are explicitly aimed at enhancing normal memory in older
adults or women going through the menopause.
Thus we can see that considerable efforts are underway to find
pharmaceutical solutions for the treatment of MCI, further reinforcing the
validity of this contested category. However, these trials also show the way in
which the category of MCI is providing a valuable bridge between well-
established notions of dementia and the common experience of age-related
memory loss in healthy adults. Underlying these issues of MCI identification
and treatment of course is the larger question of cognitive enhancement: a
topic which is now attracting considerable attention and debate both inside
and outside the academy (see e.g. AMS, 2008; BMA, 2007; DTI, 2005; Greely
et al., 2008; Harris, 2007). Again, if one of the promises of the making of a
new knowledge-frontier is that it may offer dementia research new hope for
remedial treatments, then we need to ask what cognitive enhancement
actually means. Like sexual enhancement, the difficult question about
cognitive enhancement is whether or not it is a response to real pathological
disorders or a technical and pharmaceutical identification of a dysfunction
that really falls within the parameters of normal cognition, since the two can
become blurred together. Further, where do treatments cross the shifting
border between legitimate and ‘off-label’ drugs, especially since many
Sociological Reflections on Memory, Medicine and the Brain 249

enhancement products are manufactured as poorly regulated ‘supplements’ or

‘remedies’ to complement drug medications. Indeed, how did cognition itself
become imagined to be as modifiable or in need of modification as have other
aspects of brain life through enhancement? Although these questions extend
beyond the scope of this chapter, MCI and its treatment can be seen as sitting
at the nexus of wellness-enhancement and between the promises of a
neuroenhanced future and its consequences for how healthy, active and
successful ageing is defined against dependency, loss and decline. MCI in
other words, as both a disease category and a ‘risk’ for dementia and entry
point into old, old age, encapsulates our public anxiety and scientific hope
about the ageing brain itself.

CONCLUSIONS

Let us return, in closing, to the key questions posed at the beginning of this
chapter. To what extent does the sociological concept of medicalisation
retain explanatory value in relation to recent trends and developments in the
neurosciences and neuroculture? Reciprocally, to what extent do such trends
and developments invite us to rethink or go beyond existing medicalisation
debates today? Finally, what light in particular do recent developments in
memory medicine and the shifting boundaries of cognitive impairment shed
on these issues?
At one level, the answer to these first two questions is rather straightfor-
ward: Developments in neuroscience and neurotechnology clearly raise a host
of important issues for sociology and society at large which take us beyond
the realms of medicine, not least of which concerns the very notion and nature
of what it is to be ‘human’, including fundamental questions of human
consciousness, will, intentionality, affect, selfhood, behaviour and so forth,
and a range of other important issues concerning not simply the role of
neuroscience in governance but the governance of neuroscience and its
commercial, economic and political value. On these terms alone, then,
medicalisation captures one, albeit important, dimension of this wider agenda
regarding neuroscience and society within the social sciences, arts and
humanities. Although new concepts such as ‘biomedicalisation’ may be good
to think with, moreover, particularly in capturing the social dimensions of
new ‘‘highly technoscientific’’ (Clarke et al., 2003, p. 161) forms of
biomedicine, these shifts, we have noted, are changes in emphasis involving
both old and new approaches, such that older forms of medicalisation exist
alongside other new more highly technoscientific forms of biomedicalisation.
250 SIMON J. WILLIAMS ET AL.

At another level, medicalisation remains a useful sociological concept

regarding the neurosciences because of the critical import the concept
continues to lend to our understanding of the formation of new disease
categories, drugs, technologies and health agendas. Thus, thinking both
within and beyond medicalisation challenges us to find new ways to
critically understand ideas about life and health, in particular as they
translate from scientific and clinical spheres to cultural life and patient
experience. To contribute to this task, we have posed five relational nexuses-
the bio-psych nexus, the pharma-psy nexus, the selves-subjectivity nexus, the
wellness-enhancement nexus and the neuroculture-neurofuture nexus – to
locate and summarise where neuroscientific and neurocultural forces are
intersecting.
We have also chosen to discuss some developments in memory medicine
and the shifting boundaries of cognitive health, as embodied and expressed
in the development of MCI, in order to explore how an emergent disease
category and at-risk susceptibility in the making illuminates not only the
fuzzy boundaries between normal and abnormal cognitive functioning, but
also the working of neuroscientific, neurocultural and pharmacological
interests, which in this case, are already claiming MCI as the next locus of
enhancing the mind and optimising ageing. MCI is also a good case from
which to observe the power of neuroscience to make new pathologies and
new forms of personal identity. The challenge for medical sociology will be
to find useful ways of analysing these dynamics. The five sets of associations
that form the relational nexuses we have outlined in this chapter provide a
useful way of thinking about the socio-technical processes constitutive of
them. By fusing important concepts from medical sociology with ideas from
neo-Foucauldian scholarship and science and technology studies it is
possible to provide a new way of understanding the intersection of medicine,
technoscience and society.

REFERENCES
Abi-Rached, J. M., & Rose, N. (2010). The birth of the neuromolecular gaze. History of the
Human Sciences (Special Issue on ‘Neuroscience, power and culture’), 23(1), 11–36.
Abraham, J. (2009a). The pharmaceutical industry, the state and the NHS. In: J. Gabe &
M. Calnan (Eds.), The new sociology of the health service (pp. 99–120). London:
Routledge.
Abraham, J. (2009b). Sociology of pharmaceuticals development and regulation: A realist
empirical research programme. In: S. J. Williams, J. Gabe & P. Davis (Eds.),
Pharmaceuticals and society (pp. 54–70). Oxford: Blackwell.
Sociological Reflections on Memory, Medicine and the Brain 251

Academy of Medical Sciences. (2008). Brain science, addictions and drugs. London: AMS.
Ballenger, J. F. (2006a). Self, senility, and Alzheimer’s disease in modern America. Baltimore:
Johns Hopkins University Press.
Ballenger, J. F. (2006b). The biomedical deconstruction of senility and the persistent
stigmatization of old age in the United States. In: A. Leibing & L. Cohen (Eds.),
Thinking about dementia: Culture, loss, and the anthropology of senility (pp. 106–120).
New Brunswick, NJ: Rutgers University Press.
Barber, C. (2008). The medicated Americans: Antidepressant prescriptions on the rise. Scientific
American, February, 37–48.
Barr, M., & Rose, D. (2009). The great ambivalence; factors likely to affect service user and
public acceptability of the pharmacogenomics of antidepressant medication. In:
S. J. Williams, J. Gabe & P. Davis (Eds.), Pharmaceuticals and society (pp. 126–139).
Oxford: Blackwell.
Bennett, D. A., Schneider, J. A., Bienias, J. L., Evans, D. A., & Wilson, R. S. (2005). Mild
cognitive impairment is related to Alzheimer disease pathology and cerebral infarctions.
Neurology, 64(5), 834–841.
Blech, J. (2006). Inventing diseases and pushing pills. London: Routledge.
British Medical Association. (2007). Boosting your brain power: Ethical aspects of cognitive
enhancements. London: BMA.
Brown, N. (2003). Hope against hype: Accountability in biopasts, presents and futures. Science
Studies, 16(2), 3–21.
Brown, N., & Michael, M. (2003). A sociology of expectations: Retrospecting prospects and
prospecting retrospects. Technology Assessment and Strategic Management, 15(1), 3–18.
Bruscoli, M., & Lovestone, S. (2004). Is MCI really just early dementia? A systematic review of
conversion studies. International Psychogeriatrics, 16(2), 129–140.
Clarke, A., Fishman, J., Fosket, J. R., Mamo, L., & Shim, J. (2003). Biomedicalization:
Technoscientific transformations of health, illness and US biomedicine. American
Sociological Review, 68(2), 161–194.
Conrad, P. (2005). The shifting engines of medicalization. Journal of Health and Social
Behavior, 46(1), 3–14.
Conrad, P. (2007). The medicalisation of society. Baltimore: Johns Hopkins University Press.
Conrad, P., Mackie, T., & Mehrota, A. (2010). The costs of medicalization. Social Science and
Medicine, 70(12), 1943–1947.
Crawford, M. R. (2008). The limits of neuro-talk. The New Atlantis: A Journal of Technology
and Society, 19(Winter), 65–78. www.TheNewAlantis.com (Accessed 01/02/2011).
Cutler, N. R., Sramek, J. J., Murphy, M. F., Riordan, H., Bieck, P., & Carta, A. (2010). The
imoending crisis in CNS drug development in critical pathways to success in CNS drug
development. Oxford, UK: Wiley-Blackwell. 10.1002/9781444318579.ch1
DeGrazia, D. (2005). Enhancement technologies and human identity. Journal of Medicine and
Philosophy, 30(3), 261–283.
Department of Trade and Industry (DTI) Office of Science and Technology. (2005). Drugs
Futures 2025. London: DTI.
Fox, N. J., & Ward, K. J. (2008). Pharma in the bedroom y and the kitchen y . The
pharmaceuticalisation of daily life. Sociology of Health and Illness, 30(6), 856–868.
Franks, D. (2010). Neurosociology. New York: Springer.
Franks, D., & Smith, T. S. (Eds.). (1999). Mind, brain and society: Toward a neurosociology of
emotion. Stamford, CT: JAI Press.
252 SIMON J. WILLIAMS ET AL.

Frisoni, G., Canu, E., Geroldi, C., Zanetti, O., & Zacchi, V. (2006). Drug prescription in mild
cognitive impairment: The physicians’ perspective in Italy. International Journal of
Geriatric Psychiatry, 21(11), 1071–1077.
Fullagar, S. (2009). Negotiating the neurochemical self: Anti-depressant consumption
in women’s recovery from depression. American Journal of Public Health, 13(3),
389–409.
Gibbon, S., & Novas, C. (Eds.). (2008). Biosocialities, genetics and the social sciences. London:
Routledge.
Graham, J. E., & Ritchie, K. (2006). Mild cognitive impairment: Ethical considerations
for nosological flexibility in human kinds. Philosophy, Psychiatry & Psychology, 13(1),
31–43.
Greely, H., Sahakian, B., Harris, J., Kessler, R. C., Gazzaniga, M., Campbell, P., & Farah, M. J.
(2008). Towards responsible use of cognitive-enhancing drugs by the healthy. Nature,
456(10 December), 702–705.
Greenberg, G. (2010). Manufacturing depression: The secret history of a modern disease.
London: Bloomsbury.
Harris, J. (2007). Enhancing evolution: The ethical case for making better people. Princeton, NJ:
Princeton University Press.
Healy, D. (2006). Let Them Eat Prozac: The unhealthy relationship between the pharmaceutical
industry and depression. New York: New York University Press.
History of the Human Sciences. (2010). Special issue on neuroscience. Power and Culture, 23(1),
1–126.
Hogle, L. F. (2005). Enhancement technologies and the body. Annual Review of Anthropology,
34, 695–716.
Hogle, L. F. (2007). Emerging medical technologies. In: E. J. Hackett, O. Amsterdamska,
M. Lynch & J. Wajcman (Eds.), The handbook of science and technology studies, 3e
(pp. 841–873). Cambridge, MA: MIT Press.
http://Drugtopics.modernmedicine.com/Topþ200þDrugs
Katz, S., & Marshall, B. L. (2002). Forever functional: Male sexual fitness and the aging body.
Body & Society, 8(4), 43–70.
Katz, S., & Peters, K. R. (2008). Enhancing the mind? Memory medicine, dementia, and the
aging brain. Journal of Aging Studies, 22(4), 348–355.
Kaufman, S., Shim, J. K., & Russ, A. J. (2004). Revisiting the biomedicalization of aging:
Clinical trends and ethical challenges. The Gerontologist, 44(6), 731–738.
Kramer, P. D. (1994). Listening to Prozac. London: Fourth Estate.
Kroll-Smith, S. (2003). Popular media and ‘excessive daytime sleepiness’: A study of rhetorical
authority in medical sociology. Sociology of Health & Illness, 25(6), 625–643.
Leibing, A. (2009). From the periphery to the center: Treating behavioural and psychological
symptoms in dementia. In: J. Ballenger, P. Whitehouse, C. Lyketsos, P. Rabins &
J. Karlawish (Eds.), Do we have a pill for that? Interdisciplinary perspectives on the
development, use and evaluation of drugs in the treatment of dementia (pp. 74–97).
Baltimore: The Johns Hopkins University Press.
Maasen, S., & Sutter, B. (2007). On willing selves: Neoliberal politics and the challenge of
neuroscience. Bastingtoke: Macmillan.
Marshall, B. L., & Katz, S. (2006). From androgyny to androgens: Re-sexing the aging body.
In: T. Calasanti & K. Slevin (Eds.), Age matters (pp. 75–97). London: Routledge.
Martin, E. (2007). Bipolar expeditions. Princeton, NJ: Princeton University Press.
Sociological Reflections on Memory, Medicine and the Brain 253

Martin, P., & Ashcroft, R. (2005). Neuroscience, ethics and society: A review of the field.
Background paper prepared for the 2005 Wellcome Trust Summer School on
‘Neuroethics’. Retrieved from www.wellcome.ac.uk/stellent/groups/.../@msh.../wtx027876.
pdf
Martin, P., Brown, N., & Kraft, A. (2008). From bedside to bench? Communities of promise,
translational research and the making of blood stem cells. Science as Culture, 17(1),
29–41.
Mental Health Foundation. (2010). New data shows overreliance on antidepressants, says
Mental Health Foundation. Retrieved from ohttp://www.mentalhealth.org.uk/media/
news-releases/news-releases-2009/21-april2009/?locale¼enW Accessed on 30 November.
Miller, P., & Wilsdon, J. (Eds.). (2006). Better humans? The politics of human enhancement and
life extension. London: Demos.
Moreira, T., May, C., & Bond, J. (2009). Mild cognitive impairment and the collective
production of uncertainty. Social Studies of Science, 39(5), 665–690.
Moynihan, R. (2002). Disease-mongering: How doctors, drug companies, and insurers are
making you feel sick. British Medical Journal, 324, 923.
Moynihan, R., & Cassels, A. (2005). Selling sickness. New York: Nation Books.
Moynihan, R., Health, I., & Henry, D. (2002). Selling sickness: The pharmaceutical industry
and disease mongering. British Medical Journal, 324(13 April), 886–891.
Moynihan, R., & Henry, D. (2006). The fight against disease mongering: Generating knowledge
for action. Public Library of Science – Medicine, Apr3(4), e191.
Moynihan, R., & Mintzes, B. (2010). Sex, lies & pharmaceuticals: How drug companies plan to
profit from female sexual dysfunction. Vancouver, BC: Greystone Books.
Olfsun, M., & Marcus, S. (2009). National patterns in antidepressant medication treatment.
Archives of General Psychiatry, 66(8), 848–856.
Petersen, R. C., Stevens, J. C., Ganguli, M., Tangalos, E. G., Cummings, J. L., & DeKosky, S. T.
(2001). Practice parameter: Early detection of dementia: Mild cognitive impairment (an
evidence-based review). Neurology, 56(9), 1132–1142.
Petersen, R. C., Smith, G. E., Waring, S. C., Ivnik, R. J., Tangalos, E. G., & Kokmen, E.
(1999). Mild cognitive impairment: Clinical characterization and outcome. Archives of
Neurology, 56(March), 303–308.
Philosophy, Psychiatry, & Psychology. (2006). Special issue: Mild cognitive impairment, Vol.
13, No. 1.
Pickersgill, M. (2009). Between soma and society: Neuroscience and the ontology of
psychopathology. BioSocieties, 4(1), 45–60.
Pickersgill, M., Cunningham-Burley, S., & Martin, P. A. (2011). Constituting neurologic
subjects: Neuroscience, subjectivity, and the mundane significance of the brain.
Subjectivity, 4(3), 346–365
Post, S. G. (2000). The concept of Alzheimer disease in a hypercognitive society. In:
P. J. Whitehouse, K. Maurer & J. F. Ballenger (Eds.), Concepts of Alzheimer disease:
Biological, clinical, and cultural perspectives (pp. 235–256). Baltimore: Johns Hopkins
University Press.
Rose, N. (2007a). Beyond medicalisation? Lancet, 369, 700–701.
Rose, N. (2007b). The politics of life itself: Biomedicine, power and subjectivity in the twenty-first
century. Princeton, NJ: Princeton University Press.
Schermer, M., Bolt, I., de Jongh, R., & Olivier, B. (2009). The future of pharmacological
enhancements: Expectations and policies. Neuroethics, 2, 75–87.
254 SIMON J. WILLIAMS ET AL.

Scott, S. (2006). The medicalisation of shyness: From social misfits to social fitness. Sociology of
Health & Illness, 28(2), 133–155.
Shostak, S., Conrad, P., & Horwitz, A. V. (2008). Sequencing and its consequences: Path
dependence and the relationship between genetics and medicalization. American Journal
of Sociology, 114(Suppl.), S287–316.
Szymczak, J. E., & Conrad, P. (2006). Medicalizing the aging male body: Andropause
and baldness. In: D. Rosenfeld & C. A. Faircloth (Eds.), Medicalized masculinities
(pp. 89–111). Philadelphia, PA: Temple University Press.
Tallis, R. (2009). Neurotrash. New Humanist, 124, 6(Nov/Dec). Retrieved from http://
newhumanist.org.uk/2172/neurotrash. Accessed 30 January 2010.
Turner, D. C., & Sahakian, B. J. (2006). Neuroethics of cognitive enhancement. BioSocieties,
1(1), 113–123.
Tuokko, H., Frerichs, R. J., & Kristjansson, B. (2001). Cognitive impairment, no dementia:
Concepts and issues. International Psychogeriatrics, 13(Suppl. 1), 183–202.
Vidal, F. (2009). Brainhood, anthropological figure of modernity. History of the Human
Sciences, 22(1), 5–36.
Whitehouse, P. J., & Moody, H. R. (2006). Mild cognitive impairment: A ‘hardening of the
categories’? Dementia: The International Journal of Social Research and Practice, 5(1),
11–25.
Whitehouse, P. J., & Juengst, E. T. (2005). Antiaging medicine and mild cognitive impairment:
Practice and policy issues for geriatrics. Journal of the American Geriatrics Society, 53(8),
1417–1422.
Williams, S. J., Martin, P. & Gabe, J. (2011a). The pharmaceuticalisation of society: a
framework for analysis. Sociology of Health & Illness, 33(5), 710–725.
Williams, S. J, Martin, P. & Gabe, J. (2011b). Evolving sociological analyses of
‘‘pharmaceuticalisation’’: A response to Abraham. Sociology of Health & Illness,
33(5), 729–730.
SOCIOLOGY OF NEUROSCIENCE
OR NEUROSOCIOLOGY?

Christian von Scheve

ABSTRACT
A neuroscientific turn has been diagnosed in several disciplines, but
sociology has not yet undertaken this turn. While other social science
disciplines are engaging in a lively discussion with the ‘new brain sciences’
and have established extensive collaboration, exchange between
neuroscience and sociology is almost absent. Besides a general scepticism
towards ‘‘reductionist’’ explanations, this is largely due to sociology
focusing on its traditional role as observer and critic of current
developments in science. In this chapter, I argue that this ‘sociology of
neuroscience’ approach should be complemented by an increased attention
to actual neuroscientific findings with respect to key theoretical concepts
in sociology and social theory more generally. I discuss how contemporary
neuroscience research can assist in sharpening and empirically refining
our understanding of a number of micro-sociological concepts that often
elude investigation with more traditional social science methods. I
highlight the possible benefits and pitfalls of such endeavours by
discussing the ‘neurosociology’ paradigm and sketch alternative ways of
mutual engagement with the new brain sciences.

Sociological Reflections on the Neurosciences

Advances in Medical Sociology, Volume 13, 255–278
Copyright r 2011 by Emerald Group Publishing Limited
All rights of reproduction in any form reserved
ISSN: 1057-6290/doi:10.1108/S1057-6290(2011)0000013015
255
256 CHRISTIAN VON SCHEVE

INTRODUCTION

A neuroscientific turn has been diagnosed in several disciplines, for example in

economics, philosophy, anthropology, law and psychology (e.g., Camerer,
2008; Churchland, 1989; Dominguez Duque, Turner, Lewis, & Egan, 2010).
Although this turn is still confined to specialised disciplinary branches, its
impact on major concepts and theoretical reasoning in these disciplines is
already remarkable. The social sciences – and in particular sociology – have
not yet undertaken this turn. At first glance, this is surprising, since the
neurosciences – and most prominently the ‘new brain sciences’, such as social,
cognitive and affective neuroscience – have been investigating key concepts of
sociological thought for quite some time; for example, cooperation, norms
and intersubjectivity. While other disciplines are more or less actively
engaging in a lively discussion with these branches of neuroscience and have
established collaboration on theoretical, empirical and occasionally also
institutional levels, mutual engagement or exchange between neuroscience
and sociology is hard to find.
On closer inspection, this is less surprising, because the reasons for
sociology’s reluctance towards this kind of cooperation may be easily seen in
sociologists’ profound interest in an alternative form of rapprochement: its
classical and important role as an observer and critic of current
developments in science, technology and society. This ‘sociology of
neuroscience’ approach – only just emerging in institutionalized contexts,
such as within the ‘European Neuroscience and Society Network’
(www.lse.ac.uk/collections/ENSN) or the ‘Critical Neuroscience’ (www.
critical-neuroscience.org) initiative – is chiefly interested in examining the
manifold implications and consequences of neuroscientific research on
culture and society at large.
In this chapter, I argue that the sociology of neuroscience perspective
should be complemented by an increased and detailed attention to actual
neuroscientific findings with respect to key theoretical concepts in sociology
and social theory more generally. I discuss how contemporary neuroscience
research can assist in sharpening and empirically refining our understanding
of a number of micro-sociological concepts that often elude investigation
with more traditional methods, such as ethnographic observation,
introspective self-reports or interpretative and hermeneutic analyses.
This has recently been attempted, for instance, by David Franks (2010)
and Warren TenHouten (1997, 1999), who have dubbed their approaches
‘neurosociology’. Despite this somewhat unfortunate labelling, they do give
clear and promising insights into how neuroscientific research might inform
Sociology of Neuroscience or Neurosociology? 257

social theorizing. However, as I illustrate, their work is to some extent prone

to the same critique that shattered previous attempts of incorporating
biological mechanisms into models of sociological explanation. I thus
outline different ways for a sociological engagement with the neurosciences
that potentially circumvent these problems and aims at combining the
critical stance of the sociology of neuroscience with certain aims of the
neurosociological paradigm.
The chapter is structured as follows: First, I briefly illustrate current
approaches in the sociology of neuroscience which broadly stand in the
tradition of medical sociology, science and technology studies (STS) and the
sociology of science. I put particular emphasis on those works relevant for a
neurosociological perspective in that their critique is aimed at the sometimes
careless and metaphorical use of social science concepts in neuroscientific
research; for example, in the fields of social status, norms or stratification.
Second, I discuss a number of promises and perils of recent neurosociolo-
gical approaches and highlight their proneness to critique. By shifting
attention from macro-social processes down to physiological levels of
analysis and not justifying why – for sociological purposes – intermediate
analyses, in particular social psychological, cannot do the trick (although
they mostly can), the necessity to rely on neuroscientific data often remains
unwarranted. Third, I suggest two possible ways and strategies to concisely
integrate findings from the neurosciences into sociological theory: one that
makes explicit use of the findings of STS in the field of neuroscience
research, and second one that is inspired by previous attempts to combine
sociology and research on distributed artificial intelligence, calling for an in
situ cooperation between neuroscience and sociology.

THE SOCIOLOGY OF NEUROSCIENCE AS

SOCIOLOGY OF SCIENCE

The sociologies of medicine and science have, as yet, only little to say about
current trends and developments in the neurosciences, and their social and
cultural impact. A dedicated field of the sociology of neuroscience is just
beginning to emerge. Traditionally, the sociology of science as part of the
larger interdisciplinary endeavour of STS is concerned with the social and
cultural embeddedness of the production of scientific knowledge and with its
ramifications on various areas of society, for example institutions, politics,
markets, organizations and social relationships (Collins, 1983; Hackett,
258 CHRISTIAN VON SCHEVE

Amsterdamska, Lynch, & Wajcman, 2007; Shapin, 1995). In pursuing this

agenda, STS usually employs well-established social science methods, such
as discourse analysis, ethnographic observations, and interviews.
The majority of studies in the sociology of science seek to highlight the
social construction of scientific knowledge and to dissect the conditions
under which this knowledge is produced (Knorr-Cetina, 1981; Lynch, 1993).
Emphasis is commonly put on the social structures and processes that
constitute scientific research; for example, research practices and politics,
the organizational structure of research institutions, behaviour of corporate
actors, research funding systems and networks of researchers. These form
the very basis of any kind of scientific knowledge. Hence, much of the
research in STS is concerned not in the first place with the ontological status
of certain research findings, but rather with the epistemological question
of how findings are disseminated and regarded as objective truths
(cf. Pickersgill, 2010).
In addition to investigating the production of scientific knowledge,
sociology is also concerned with assessing the societal impact of this kind of
knowledge. This line of enquiry is well-known with regard to scientific
disciplines closely related to technological advances and innovations; for
instance, biology, engineering, and information technology. Here, the focus
is not primarily on the production of scientific knowledge, but on the
consequences for a general, public understanding of the respective subject
matters and their implications for policies, economies and social relations.
This encompasses, for example, genetics (Conrad, 2000; Nerlich & Hellsten,
2004), psychopharmacology (Ehrenberg, 2009; Rose, 2003), nanotechnology
(Burri, 2009; Kurath, 2009) and new media (May, 2002; Turkle, 1997).
In a programmatic essay, Choudhury, Nagel, and Slaby (2009) sketch the
way STS and the sociology of biomedical knowledge have so far engaged
with the neurosciences, and with biotechnology more generally, and lay out
avenues for a more systematic way to approach the new brain sciences from
a ‘‘critical’’ (sociological) stance (for related discussions, see Beaulieu, 2002;
Littlefield, 2010; Pickersgill, 2009). For one, they highlight historical
approaches to the neurosciences which help understand the formation of
key concepts and practices, which are (also) used in contemporary
neuroscience research. Analyses emphasizing this historical dimension
primarily illuminate how the convergence of prevailing socio-cultural and
technological conditions can lead to the formation of categorical distinc-
tions between the ‘normal’ and the ‘pathological’, to the transformation of
the subjective and qualitative dimensions of human life into quantifiable
aspects of human neurophysiology, and to the treatment of scientific
Sociology of Neuroscience or Neurosociology? 259

objectivity as a highly prized epistemic virtue (Choudhury et al. 2009, p. 66;

see also Rose, 2010; Vidal, 2009). Choudhury and colleagues (ibid.) also
emphasise that a historical perspective might dampen the often overstressed
expectations attributed to the neurosciences and the public ‘hype’
surrounding them.
A second avenue for sociological investigations of neuroscientific
practices is seen in the examination and assessment of scientific standards
and the use of theoretical concepts and methods. Although this clearly is not
the primary objective of social science inquiry but rather a basic necessity
for any scientific discipline, it is no doubt promising to observe, document,
and interpret how these debates emerge and are discussed in the
neuroscience community (e.g., Logothetis, 2008). A good example for such
an analysis is the discussion that was recently instigated by an article by
Edward Vul and colleagues (Vul, Harris, Winkielman, & Pashler, 2009)
originally titled ‘Voodoo Correlations in Social Neuroscience’. In this paper,
Vul and co-workers heavily attacked a number of neuroscience colleagues
for making false statistical inferences (Vul et al., 2009). From a sociological
perspective, this debate is not so much interesting because of the statistical
problem itself (i.e., non-independence errors, which are better known in the
social sciences as selection-bias distortions), but for the social dynamics it
created in the neuroscience community (cf. also Kriegeskorte, Simmons,
Bellgowan, & Baker, 2009). These dynamics can be estimated by the number
and the tone of comments in scientific journals and the pressure most
probably exhibited by the editors of the prestigious journal Perspectives on
Psychological Science to rename the article from ‘Voodoo Correlations in
Social Neuroscience’ to ‘Puzzlingly High Correlations in fMRI Studies of
Emotion, Personality, and Social Cognition’.
A similar discussion might be expected on other issues in functional
magnetic resonance imaging (fMRI); for example, that of reliability (Bennett
& Miller, 2010). Also, the selection and composition of subject samples in
current psychological and most of the existing neuroimaging studies are
highly debated. For instance, Henrich, Heine, and Norenzayan (2010a) aptly
criticize that the usual subject pool for experimental studies is made up by
‘‘people from Western, educated, industrialized, rich and democratic
(WEIRD) societies – and particularly American undergraduates – [which]
are some of the most psychologically unusual people on Earth’’ (Henrich,
Heine, & Norenzayan, 2010b, p. 29). In a commentary to this target article in
the journal Behavioral and Brain Sciences, Chiao and Cheon (2010, p. 29) add
that ‘‘within the field of psychology, 95% of psychological samples come
from countries with only 12% of the world’s population’’ and that ‘‘within
260 CHRISTIAN VON SCHEVE

the field of human neuroimaging, 90% of peer-reviewed neuroimaging

studies come from Western countries (Chiao, 2009)’’ (cf. Arnett, 2008).
This line of inquiry is closely related to ethnographic field studies of
neuroscientific research practice. As Choudhury and colleagues (2009) point
out, the classical methods of STS provide an understanding of how
neuroscience research is conducted in the laboratory and what the social
systems and networks it is embedded in look like. Ethnographic approaches
provide insight into intra-disciplinary discourse, hegemonic thought
structures and communities (e.g., Burnham & Johnson, 2005), forms of
organization, management and funding, and the everyday practices of
researchers and clinicians (Dumit, 2004; Joyce, 2008). In comparison with
ethnographic analyses in other scientific fields (e.g., genetics or information
technology), this methodological perspective seems equally promising in a
neuroscience context, shedding light on how and why neuroscience comes to
be seen by its practitioners not primarily as a method and tool, but as a
comprehensive explanatory framework of human behaviour.
Most interesting in this context, and probably making up a great deal of
the ‘hype’ surrounding the new brain sciences, are responses from the public
and the media representations of neuroscience research. As has been shown
in other areas of scientific inquiry – for example, in genome sequencing
(Gerhards & Schäfer, 2009) – media representations of scientific findings
and debates are the primary locus driving the public perception and
understanding of this research (Schäfer, 2009). In a review, Racine,
Bar-Ilan, and Illes (2005) examine how neuroscience research is perceived
by the ‘‘public eye’’, mostly conveyed through the mass media, and whether
its applications, limitations and risks are properly communicated and
received.
Other research has focused on the effects of the visualization of the brain
on the credibility and believability of research results (McCabe & Castel,
2008; Weisberg, Keil, Goodstein, Rawson, & Gray, 2008). Scientists as well
as the media suggest that the use of brain images (acquired, e.g., through
fMRI or other imaging techniques) to represent brain activity, ‘‘confers a
great deal of scientific credibility to studies of cognition, and that these
images are one of the primary reasons for public interest in fMRI research’’
(McCabe & Castel, 2008, p. 344). The alleged ability to precisely localize
complex human cognitive capacities such as deception, belief or moral
reasoning seems to be highly attractive to the general public and the media
which usually disseminates research findings (Dobbs, 2005; Dumit, 2004;
Littlefield, 2009). Excessive reliance on brain images, however, tends to lead
to an oversimplification of the issues at hand and media reports are thought
Sociology of Neuroscience or Neurosociology? 261

to frequently misrepresent conclusions drawn in neuroimaging studies

(Racine et al., 2005).
A further aspect of a ‘‘critical’’ engagement with the neurosciences which
is highlighted by Choudhury and associates (2009) pertains to the economic
dimensions of science. As with most other forms of research that produce
knowledge which is easily marketable and applicable in a number of
contexts, neuroscience is embedded into economic structures of funding
agencies, pharmaceutical corporations, medical service providers, technical
equipment manufacturers, and so forth. It is no doubt highly interesting to
investigate the constraints that are placed on neuroscience research by this
complex combination of interests, but also to examine the possibilities that
emerge from this constellation.
When reflecting on these manifold dimensions of possible sociological
engagement with the neurosciences, it is remarkable that one particular
aspect of the new brain sciences seems to only play a minor role: its impact on
the stocks of knowledge, theories, and concepts in the social sciences
themselves. In contrast to other fields of research which are investigated by
sociologists of medicine and of science (genetics, for example), neuroscience is
special in that it partly seeks to provide answers to questions that the social
sciences themselves have been asking for decades. This impact is only very
sparsely reflected in sociological studies of the neurosciences. In contrast, it is
exactly the kind of analysis whose impact seems to thrust current endeavours
in the various emerging ‘neuro-’ disciplines in the humanities and parts of the
social sciences, such as neuroanthropology, neuroeconomics, neurolaw and
neurophilosophy (see Johnson and Littlefield, Chapter 12, this volume). This
is, for example, reflected in recent workshops and conferences such as
‘Neurocultures’ (http://mediathek.mpiwg-berlin.mpg.de/mediathekPublic/
neurocultures.html) (Berlin, 2009), ‘Personhood in a Neurobiological
Age’ (http://www.lse.ac.uk/collections/brainSelfSociety/personhood-in-
a-neurobiological-age-symposium.htm) (London, 2010) or ‘Neurosociety y
What is it with the brain these days?’ (http://www.sbs.ox.ac.uk/centres/insis/
news/Pages/neurosociety.aspx) (Oxford, 2010).
Within sociology, these reflections mostly do not occur within STS, but
rather in the fields of sociological theory and methods. In accordance with
the discussion and adoption of neuroscience findings in other disciplines, this
endeavour has been catchphrased ‘neurosociology’ (Franks, 2010). In the
following section, I discuss how the field of neurosociology is located in the
lively and more general discussion on the place of ‘biosocial’ explanations in
sociology, what it tries to accomplish, and how it can possibly profit from
and complement works in STS focusing on the neurosciences.
262 CHRISTIAN VON SCHEVE

NEUROSOCIOLOGY AS ANOTHER
‘NEURO-’SCIENCE?

Critics of the various newly emerging ‘neuro-’ disciplines hold that the new
brain sciences may still be too premature for their findings to turn theories
and concepts of the more established social science and humanities
disciplines on their heads, or even to be integrated into relevant disciplinary
debates (cf. Abi-Rached, 2008; Rees & Rose, 2004; Reichertz & Zaboura,
2006; Rinaldi, 2009; Rose, 2006). Within sociology, this seems to stem from
a long-standing reservation to incorporate findings from physiologically
or biologically inspired disciplines into sociological theory (Dingwall,
Nerlich, & Hillyard, 2003). Primarily, it seems that the debates following
Edward O. Wilson’s (1975) Sociobiology in the 1970s and the prolonged fear
of ‘reductionism’ or ‘determinism’ have led to a protracted disregard of
discoveries in the life sciences at large (Alcock, 2001; Nielsen, 1994;
Williams, 2009). This attitude might be traced back to Emile Durkheim’s
(1964) Rules of Sociological Method and his demand to explain the social
through the social only. If, then, anything that is ‘biological’ is being
conceptualized as not (also) social – which is quite often the case – then the
use of biological or physiological principles obviously forbids itself for those
sociologists closely sticking to Durkheim’s claim. This also illustrates that
sociologists usually regard ‘biology’ and ‘culture’ as two distinct antipodes,
and those who wish to invoke ‘cultural’ principles in the explanation of
social processes are required to let go of any biological explanations. As
Freese and colleagues note,

To many sociologists, ‘biology’ and the ‘social’ are locked in an explanatory zero-sum
game in which any ground ceded to the former diminishes the value of sociology (and the
need for sociologists). (Freese, Li, & Wade, 2003, p. 234).

Meanwhile, however, an increasing number of sociologists argue that this

disregard of biological and physiological explanations is in fact counter-
productive with respect to theoretical and empirical advancement in sociology,
and the public standing of the discipline. Francoise Nielsen (1994), for
instance, has aptly illustrated the ways in which ‘sociobiological’ reasoning
can inform sociology. She highlights several evolutionary principles, such as
different units of selection (gene, organism and group), inclusive fitness,
relatedness and reciprocal altruism, and sketches how they might affect
different areas of sociological inquiry: gender roles and collective action, for
example.
Sociology of Neuroscience or Neurosociology? 263

More recently, Douglas Massey in a presidential address to the American

Sociological Association argued that sociologists ‘‘have allowed the fact that
we are social beings to obscure the biological foundations upon which our
behavior ultimately rests’’ (Massey, 2002, p. 1; cf. Freese et al., 2003, p. 234).
Similarly, Benton argues for a ‘‘re-alignment of the human social sciences
with the life sciences’’ (Benton, 1991, p. 25) and Bury urges us ‘‘to rethink
the relationship between sociology and the biological sciences’’ (Bury, 1997,
p. 199; cf. Newton, 2003). The strongest claim for taking into account
biological mechanisms in sociological reasoning and explanations is most
probably made by Freese and associates, who illustrate how the ‘‘varying
ways in which the specific materiality of the human actor – our ‘biology’ –
can be asserted to be relevant toward understanding why we behave as we
do or why human societies are organized as they are’’ (Freese et al., 2003,
p. 234).
Freese and colleagues (2003) systematically track three broad areas in
which research in the biological sciences can provide insights into genuinely
sociological questions. First, they review research in evolutionary psychol-
ogy and other evolutionary-minded sciences (e.g., human behavioural
ecology). They highlight that human psychological capacities have been
significantly shaped over vast timescales, compared to which modern
societies occupy only a tiny fragment. Thus, much of our psychological
capacities reflect adaptations to very different environments. Acknowl-
edging this perspective, they argue, bears important implications for
sociological research. Second, they illustrate how current research in
genetics can be informative for sociological issues. In particular, they give
detailed accounts of issues of heritability and gene-environment interactions
which clearly show that – given specific genotype-phenotype linkages – the
often articulated fears of genetic determinism are largely unwarranted.
Third, Freese and colleagues (2003) review research on biomarkers and
bioindicators, such as certain neurotransmitters and hormones, which are
important for human social behaviour; for example, serotonin and
testosterone. They emphasize that delineating the link between these
indicators, the social environment and social action is highly complex and
that most attempts at establishing the primacy of one over the other – either
from the side of sociology or biology – have failed.
When looking at the history of sociological thought, it is almost
surprising that taking note of these kinds of explanations is so contested
in current debates. Take, for example, Pierre Bourdieu’s concept of
‘habitus’, which extensively relies on the human body as an explanatory
unit for examining social action and the emergence and reproduction of
264 CHRISTIAN VON SCHEVE

social structures (Bourdieu, 1977, 1990). Although the exact physiological

processes and mechanisms that are in operation in bringing about the
supposed effects remain opaque in Bourdieu’s oeuvre, more recent
theorizing has convincingly linked current research in the cognitive and
biological sciences with Bourdieu’s arguments. Lizardo (2005) has done this
on the grounds of Piaget’s views on embodiment and cognitive structures,
and Pickel (2005) by decomposing the ‘habitus’ into four separate systems:
brains, minds, social systems and symbolic systems.
Similarly, there is a long tradition in sociology in referring to processes of
socialization and internalization in explaining recurring patterns and
practices of social action. Most of the extant works, however, concentrate
on forms of cognitive socialization and internalization – most prominently
Berger and Luckmann (1966) and later writings on the sociology of
knowledge and cognitive sociology (e.g., Zerubavel, 1997). This emphasis on
mental and psychological processes has led to a neglect of the physiological
aspects of socialization and internalization. This is surprising, since
Bourdieu’s concept of the habitus already incorporated principles of
physiological socialization (hexis). More recent approaches, however, tend
to incorporate the body as a promising unit of sociological analyses, which
is, for example, reflected in an increasing use of the concept of embodiment
(Cregan, 2006; Ignatow, 2007; Newton, 2003).
These approaches reflect a dedicated sociological interest in the
interactions between the social environment and humans’ physiological
parameters (i.e., in the ‘social plasticity’ of human physiology) – especially
those which are relevant for social action. The timespan that is deemed
relevant in these works is usually limited to the average lifetime of humans,
which means it is strictly focused on ontogenetic development. There is no
reason, however, not to extend these kinds of analyses from ontogenetic to
phylogenetic development and to include evolutionary models of human
behaviour – as, for instance, illustrated by Freese and colleagues (2003).
One of the most hotly debated interdisciplinary marriages is that of
sociology and genetics. This is for various reasons, of which two of the most
striking are probably these: First, the mechanisms translating specific
genetic predispositions into corresponding phenotypes are still largely
unknown – that is, the degree to which genetic configurations actually
impact behavioural outcomes is a matter of ongoing research and not yet
fully understood (Freese, 2008). Second, most sociological engagement with
genetics still seems to assume that the genetic makeup of individuals is
largely invariant and does thus not allow accounting for any influences of
culture and society on genetic behavioural dispositions. Accordingly,
Sociology of Neuroscience or Neurosociology? 265

genetically informed explanations of social behaviour are often – as a

matter of principle – disregarded as deterministic and reductionist
(cf. Lippman, 1992; Nelkin & Lindee, 2004; Sloan, 2000). Such approaches
tend to grant no room to interaction effects between environment and
individual, as, for instance, in those theories referring to the habitus or
socialization processes.
Yet, today, sociologists seriously engaging in genetically informed
research have produced far richer and more sophisticated analyses than
those so aptly critiqued by scholars like Dorothy Nelkin and Susan Lindee.
They show, for example, that genetic differences might in fact be a major
confounding factor in explanations relating individual outcomes to social
environmental conditions, for instance education, income, or marriage
(cf. Freese, 2008; Freese & Shostak, 2009). Accounting for genetic differences
potentially also leads to opposite findings: it might either support conclusions
drawn from studies of the effects of social inequality or it might add distortion
to existing conclusions and lower the explanatory power of the social
environment in favour of behavioural predispositions (cf. Freese & Shostak,
2009). Moreover, current research in epigenetics seems to be particularly
important to sociologists because it investigates the biochemical mechanisms
responsible for the linkage between actual gene expression (the fundamental
level at which phenotypes emerge from genotypes) and environmental
conditions (Guo, 2008).

Neurosociology

It is within this ongoing discourse on the wedding of biological and

sociological explanations where current neurosociological endeavours are
situated, and many of the arguments that are exchanged over evolutionary
reasoning or the usefulness of genetic information perfectly apply to the
efforts to account for neuroscientific findings.
The term ‘neurosociology’ was first used by Bogen, DeZure, TenHouten,
and Marsch (1972) and shortly after introduced into sociological discourse by
TenHouten and Kaplan (1973). TenHouten (1999) then elaborated on the
neurosociological paradigm as a reaction to the United States Congress’s
declaration of the 1990s as the ‘Decade of the Brain’ and to the emerging field
of ‘social neuroscience’ as a cooperation between neuroscience and social
psychology seeking to establish the fundamentally social nature of the human
brain (e.g., Cacioppo & Berntson, 1992; Cacioppo, Berntson, Sheridan, &
McClintock, 2000). Neurosociology, he states,
266 CHRISTIAN VON SCHEVE

takes the neural functioning and the mental life of the member of society as one level of
reality, and in this sense requires a radically micro level of analysis. There is, in such a
focus, no biological reductionism or determination, as we see for example in certain
tendencies of sociobiology. (TenHouten, 1997, p. 10)

In much the same way, David Franks has taken up research in the new
brain sciences and sought to integrate it into sociological accounts of human
social behaviour (Franks, 1999; Smith & Franks, 1999). In doing so, Franks
emphasises the role of social psychology as a key bridging discipline between
‘‘ultra’’ micro-level analyses in the neurosciences and more macro-oriented
social science reasoning. This position is best elaborated in his latest work
(Franks, 2010), which at the same time can be seen as the most
comprehensive outline of the neurosociological paradigm available to date.
Basically, TenHouten (1999) and Franks (2010) concur in arguing that the
social sciences – and particularly sociology – would be well advised to take
into account research in the new brain sciences, which allows an
advancement and refinement of many classical micro-sociological concepts
such as self, experience, mind, knowledge, thinking and feeling. One reason
for the sociological relevance of neuroscientific knowledge is seen in the
focus of the ‘new’ brain sciences on the basic mechanisms of human (social)
behaviour, instead of using neuroscience techniques as a means of
undertaking medical research and diagnosis. By mostly combining experi-
mental methodological approaches from the behavioural sciences with
medical imaging [positron emission tomography (PET) or fMRI] and brain
mapping techniques [e.g., electroencephalography (EEG) or magnetoence-
phalography (MEG)], these branches of neuroscience are supposed to
provide insights into the foundations of human social behaviour and mental
processes (Harmon-Jones & Beer, 2009).
The second reason advanced by proponents of the neurosociological
paradigm is that research in the brain sciences has moved from investigating
these processes in isolated individuals to examining actors engaged in social
interactions or in activities immediately relevant for social interaction. This
shift parallels earlier developments in psychology and the flourishing of
social psychological research in areas broadly labelled social cognition,
personality, and emotion. Hence, much of the neuroscience research cited in
neurosociological approaches and with potential relevance for sociological
issues comes from the specialized branches of social, cognitive or affective
neuroscience, whose mission statement is to combine ‘‘the tools of cognitive
neuroscience with questions and theories from various social sciences
including social psychology, economics, and political science’’ (Lieberman,
2007, p. 260; Adolphs, 1999, 2003). More recently and still largely unnoted
Sociology of Neuroscience or Neurosociology? 267

in neurosociological works, neuroscience researchers started to extend this

multi-faceted agenda to also include the domain of culture in their analyses
and launched the field of cultural neuroscience (Chiao, 2009; Han &
Northoff, 2008; though for a more critical analysis see Mateo, Cabanis,
Loebell, & Krach, 2011). Cultural neuroscience seeks to investigate
‘‘cultural variation in psychological, neural and genomic processes as a
means of articulating the bidirectional relationship of these processes and
their emergent properties’’ and is ‘‘motivated by two intriguing questions of
human nature: how do cultural traits (e.g. values, beliefs, practices) shape
neurobiology (e.g. genetic and neural processes) and behaviour and how do
neurobiological mechanisms (e.g. genetic and neural processes) facilitate the
emergence and transmission of cultural traits’’ (Chiao et al, 2010, p. 356).
A third reason for the sociological relevance of neuroscience research is
seen in neuroscientists highlighting the genuinely ‘social nature’ of the
human brain. This reason is by far the most frequently and emphatically
mentioned, for example by Franks (2010) and TenHouten (1999), although
within the neuroscience literature it seems to have lost some of its
prominence. The classic works discussed in this respect are Leslie Brothers’
(1997) Friday’s Footprint and Michael Gazzaniga’s (1985) The Social Brain.
Both emphasize the specialization of the human brain to process social
information, its capacity to rapidly adapt to specific social and cultural
environments, and its dependency on social context and embeddedness into
social groups. In contrast to current debates in social cognitive neuroscience,
these works tend to bring forward more evolutionarily minded arguments
and hypothesize that the human brain evolved to cope with ecological
problems related to cooperation, increasing group sizes, and complex social
bonds and social structures (ibid.; also dubbed the ‘‘social brain hypothesis’’
of Dunbar, 2002). Exactly this perspective is taken by sociologist Jonathan
Turner who integrates neuroscience evidence and evolutionary theory to
explain the origins of human emotions (Turner, 2000).
In reviewing part of these neuroscience studies and paradigms,
TenHouten (1999) as well as Franks (2010) state that their research
hypotheses and results are directly adaptable to and relevant for the
processes and mechanisms traditionally studied by sociologists. TenHouten,
for example, refers to early sociologists such as Emile Durkheim, George H.
Mead and Karl Mannheim, in whose theories the ‘‘human mind was seen as
essential to societal organization’’ (TenHouten, 1999, p. 29). Thus,
investigating the ‘‘mind’’ with various methodological approaches should
yield substantial benefits for sociology. Concepts that reflect this position –
for instance, collective conscience (Durkheim), mind and society (Mead) or
268 CHRISTIAN VON SCHEVE

social knowledge structures (Mannheim) – are foundational to many

(modern) sociological paradigms, such as conceptions of the self, symbolic
interactionism, and cognitive sociology.
Although the neurosociological perspective on the potential contributions
of the neurosciences to social science research is fruitful and promising (von
Scheve, 2009; von Scheve & von Luede, 2005), it also bears a number of
problems and pitfalls. Some of these can be readily identified by taking into
account the manifold views expressed in the sociology of science and
medicine.
One of the major pitfalls is that studies in social cognitive neuroscience
often operate with concepts and terminologies borrowed from the social and
behavioural sciences, in particular from sociology or social psychology
(Dingwall et al., 2003). This is the case for social norms, moral judgment,
socio-economic status, social hierarchy, social status, social class, recipro-
city, altruism or empathy (cf. Lieberman, 2007). Regrettably, a substantial
number neuroscientific studies tend to ignore decades of social science
research on these concepts. In what follows, I briefly outline one example.
In a recent study, Chiao, Mathur, Harada, and Lipke (2009), following
the ‘cultural neuroscience’ paradigm, report on the ‘‘neural basis of
preference for human social hierarchy versus egalitarianism’’. Although
‘‘Marxist socialism’’ and ‘‘Rawlsian liberalism’’ are mentioned to set the
stage for the social sciences (p. 174), this namedropping is irritating – if not
misleading – because it also frames the possible interpretation of the study in
a way that is neither supported by its deign, nor by its results. Apart from
not considering the vast amount of social science research on social justice
and social inequality, they frame the study in a way that lets readers expect a
general (evolutionarily and biologically based) preference of social
hierarchies over egalitarianism in humans. For example, they state that

because of the near ubiquitous presence of social hierarchy across species and cultures, it is
plausible that the human ability to successfully navigate hierarchical social interaction arises
from adaptive mechanisms in the mind and brain that support the emergence and
maintenance of social hierarchies within and across social groups. (Chiao et al., 2009, p. 175)

In their findings, however, they only show that the neural correlates of
processing pictures of people being either in pain or in neutral situations
systematically vary with the degree of social dominance orientation (as
assessed using a psychological scale) of the subjects watching these pictures.
The conclusion Chiao and colleagues (2009, p. 174) draw – ‘‘that preference
for hierarchical rather than egalitarian social relations varies as a function of
Sociology of Neuroscience or Neurosociology? 269

neural responses within left anterior insula and anterior cingulate cortices’’ –
is thus rather daring.
It is interesting to note that proponents of the neurosociological approach
largely seem to be unaware of these obvious (and other) problems or think
they do not deserve to be underscored. Yet, this might lead to an
unfortunate and ultimately unreflexive use of neuroscience findings (and
concepts) in neurosociological research and within sociology and the social
sciences more generally. In the following section, I therefore discuss possible
loopholes to circumvent these problems as well as strategies to put
cooperation with the neurosciences on a sound and solid basis.

NEUROSCIENCE METHODS AND

SOCIOLOGICAL ANALYSIS

As the previous section has illustrated, the project of connecting

neuroscience and sociology is fraught with ambivalences. On the one hand,
an overenthusiastic and overly optimistic engagement with neuroscientific
research – as is presently seen in some works following the neurosociological
paradigm – can lead to an unreflexive use of neuroscience findings in social
science research. This is problematic because it might foster the adoption of
research results which are based on an application of social science concepts
that is possibly incompatible with the use of these concepts in sociology and
the social sciences. On the other hand, avoiding a neurosociologically
inspired engagement with the new brain sciences seems to forsake the
potential benefits of neurologic findings to sociology – as aptly demon-
strated by scholars such as Franks.
These problems can potentially have two consequences. First, they might
be seen as reminders for social scientists who are interested in social
cognitive neuroscience research to approach the respective results with
caution. Above all, sociologists and social scientists should carefully
scrutinize the concepts underlying neuroscientific studies and the inter-
pretations drawn from this data. The recent debate on ‘mirror neurons’ is a
case at hand. Here, social scientists obviously find it tempting to be served
with a concept that seems to grant empirical support to the more classical
(and at times rather opaque) notions of empathy or intersubjectivity and,
more generally, to theories of social interaction and understanding, for
example Mead’s and Cooley’s (cf. Franks, 2010, p. 85ff). A closer look at
the relevant neuroscience literature, however, reveals that there are a
number of problems in adapting mirror neuron research in a one-to-one
270 CHRISTIAN VON SCHEVE

fashion to social science concepts; for example, its still heavy reliance on
single cell studies, animal studies, and motor behaviour (Iacoboni, 2009;
Rizzolati & Craighero, 2004; cf. the excellent discussion in Zaboura, 2009).
Aside from the cautions and reflected engagement with social neu-
roscience, sociologists interested in this kind of research often overlook that
those aspects of the findings in neuroscience studies that they deem most
important for sociology have been demonstrated by, for instance, classical
psychological studies long before. Much of the research discussed in
publications sailing under the neurosociology flag has longstanding parallels
in (developmental and social) psychological or (evolutionary) anthropolo-
gical research, from which the basic behavioural results are well known and
established. In these cases, knowledge of the neural substrates or correlates
of certain phenomena and their localization in the human brain bears
absolutely no added value for sociological investigations. All too often,
social scientists grant credit to the neurosciences where a look into standard
psychology textbooks would have done the trick.
This is the case, again, for mirror neuron research. There is a large bulk of
evidence in social psychology on the automatic and unconscious imitation
and mimicking of a range of (rather complex) social behaviours (body
posture, facial expression, etc.) that still awaits integration into sociological
theory (e.g., Bargh, 1997; Bargh & Ferguson, 2000; cf. von Scheve, 2009).
Incorporation of these results will most probably bear the same utility for
the advancement of sociological theory as does neuroscience research – with
the difference that classical psychological studies have been replicated
several times more than current neuroscience paradigms.
Moreover, when accounting for neuroscientific evidence in sociological
analyses, it should be clear – and made explicit – what kinds of conclusions can
be drawn from the most widely used methods in social neuroscience (i.e., fMRI).
This is a practice that is hardly followed neither by Franks (2010) nor by
TenHouten (1999), for example. The majority of experimental social
neuroscience paradigms using fMRI rely on correlational evidence, although
the experimental designs often suggest – and are in fact interpreted as – strong
causal inferences. Imaging analyses usually consist of computing differences in
blood oxygen level-dependent (BOLD) signals between experimental baseline
and target conditions. These differences are then typically correlated with other
kinds of measures, such as behavioural or self-report data. The outcome of these
paradigms is information on which brain regions reveal stronger patterns of
activation (i.e., blood oxygen consumption) in the experimental target
condition (as compared to the baseline condition) for specific groups of
subjects (grouped according to individual differences measures).
Sociology of Neuroscience or Neurosociology? 271

Furthermore, the data are often interpreted by a process of reverse

inference. This happens when researchers conclude that when a specific
brain region is implicated in a specific task – and the same region has been
shown to be active in some other task assessing a specific cognitive or
affective ability before – this kind of cognitive or affective process is relevant
for the task in question (cf. Poldrack, 2006, 2008). Stronger (causal)
evidence is provided by lesion studies, which are comparably rare, or by
studies using ‘artificial’ lesions induced by transcranial magnetic stimulation
(TMS). Social scientists accounting for these conceptual and methodological
issues in social neuroscience research and who engage thoughtfully with the
neurosciences can thus be perfectly informed by the critiques of more
mainstream sociology of medicine and science, and also by accounting for
the critical assessments of psychology and the neurosciences advanced by
practitioners (e.g., Mateo et al., 2011; Vul et al., 2009; Henrich et al., 2010a).
Another path of engagement with the neurosciences might be found in a
more cooperative stance towards the new brain sciences, without necessarily
giving up ‘traditional’ sociological cautiousness. Sociologists might in fact
find their ways into neuroscience laboratories and actively engage in
cooperation with the neurosciences in an in situ context. Looking at the
revival of experimental methods in sociology (e.g., Bohnet, 2009; Fehr &
Gintis, 2007), this step is not as surprising as it may seem at first glance.
Taking sociological experiments to the laboratory of course strips them of
their immediate social context (losing the advantages of field experiments),
but nevertheless remains a promising and well established methodology.
The prospect of conducting sociological experiments in close cooperation
with neuroscientists and neuroscientific methods then takes social cognitive
neuroscience and related paradigms at ‘face value’, that is primarily as a
(supplementary) method of conducting empirical research and a tool for
generating sociological insight – not more, not less. It is of course crucial to
be clear about the benefits of neurological evidence for the sociological
question that is under investigation. If it were only the behavioural results
sociologists were interested in, the experimental designs could well be
conducted without the strong limitations and restrictions generated by the
use of expensive technical equipment such as fMRI scanners and the
constraints of laboratory settings. Knowledge of the neural correlates of
different kinds of social behaviours in various contexts and situations might
in fact be relevant for sociological reasoning when, for example, overt
behaviour is hardly distinguishable across subjects or experimental
conditions (e.g., habitual vs. intentional norm-compliance), introspection
is problematic, when knowledge about the style of neural processing is of
272 CHRISTIAN VON SCHEVE

interest (e.g., cognitive vs. affective; controlled vs. automatic), or when

processing ‘side-effects’ are crucial (e.g. the involvement of stress-related
brain areas).
In fact, this kind of ‘proactive’ interdisciplinary engagement has been
suggested by sociologist Thomas Malsch (2001) in the context of research on
distributed artificial intelligence (DAI). Malsch (2001) had observed a
practice in DAI research which he called the ‘‘migration of metaphors’’, by
which the semantic labels of social science concepts – for example,
coordination, cooperation, or coalition formation – were ‘imported’ by
DAI researchers to describe certain processes and mechanisms of distributed
computational systems. However, in the process of adaptation many of the
conceptual and theoretical assumptions remained fragmentary at best (cf.
von Scheve & Moldt, 2004). This situation would have been rather
unproblematic, were it not that (a) DAI researchers tended to claim to make
major contributions to a better understanding and a (theoretical) advance-
ment of these social science concepts and that (b) social scientists, becoming
aware of the sometimes rather flamboyant formulations, interpreted the
neglect of the social science literature as ignorance rather than unawareness.
Similar conclusions could be reached for social neuroscience research and
sociology.
In the context of DAI research, Malsch (2001) argues that it would be
unproductive to either simply dismiss this kind of research as premature or
irrelevant, or to plainly accept and integrate it into sociological thinking.
Rather, he proscribes active engagement in mutual dialogue and the careful
assessment of the possibilities for sociologists to actively take part in these
kinds of interdisciplinary endeavours and to use DAI techniques as new
methodological tools. He termed this rapprochement socionics (Malsch,
2001). This argument seems perfectly valid for the linkage between
neuroscience and sociology as well.

CONCLUSION

In this chapter I have discussed the possibilities of a sociological engagement

with the neurosciences. Beginning from an observation that sociology and
the social sciences more generally are restricted in their dealings with the
neurosciences, I have illustrated approaches from two major sociological
paradigms that are currently dealing with neuroscientific research. On the
one hand, there is work in the sociology of biomedical knowledge. This
strand of research engages with the new brain sciences in a way that
Sociology of Neuroscience or Neurosociology? 273

sociology has investigated other areas of medicine and scientific research

before: specifically, by examining the conditions of the production of
knowledge, by delineating the economic motivations and constraints under
which neuroscience research takes place, and by interrogating the social,
cultural and political consequences that the new brain sciences and their
findings have for society at large. I have argued that this ‘traditional’ form
of investigation largely elides the possibilities that emerge from neuroscien-
tific research for the advancement of key sociological concepts and theories.
On the other hand, these possibilities are outlined in great detail and
partly utilised by current endeavours in sociology that have been referred to
as ‘neurosociological’. Neurosociologists see themselves as working within a
sub-discipline located at the interface of sociology, social psychology and
the new brain sciences, and strive to integrate neuroscientific findings into
sociological theory. Although work in this emerging tradition is, in
principle, promising and fruitful for a better understanding of many
concepts used to explain social processes and behaviour, the adoption of
neuroscientific theories and evidence tends to happen in a rather unreflexive
fashion. I have shown that when integrating findings from the neuros-
ciences, it is crucial to be aware of the perils and problems that are
(a) inherent in social neuroscience studies and which (b) result from the at
times problematic utilisation of social science concepts in these studies. Both
remain unaccounted for in current neurosociological works. The first
domain mainly relates to methodological specificities of imaging techniques,
experimental designs, subject sample composition, and the kinds of
inferences that can be drawn from neuroscience data. The second domain
represents problems stemming from an incomplete (or unsophisticated) use
of social science concepts in social neuroscience studies which limit the
direct adaptability of these results to sociological theory.
Finally, I have discussed possible ways of engaging with the neurosciences
that might help to circumvent the problems outlined above. One option is an
engagement with the neurosciences that is inspired by the neurosociological
paradigm, but which, at the same time, takes seriously the critiques
characteristic in the sociology of neuroscience. A second – and more
venturous – option is the active engagement that lies in actually conducting
sociological studies using neuroscience methods. Referring to experimental
methods that are well established in some branches of the social sciences, I
have discussed the possibility of using imaging (and other neuroscience)
techniques as an alternative methodological approach to empirical social
research. I have highlighted parallels of this option with the socionics
approach integrating sociology and DAI (distributed artificial intelligence).
274 CHRISTIAN VON SCHEVE

Clearly, a sound sociological engagement with the neurosciences is needed in

all of the three areas discussed in this article. First, to develop a scientifically
grounded understanding of the impact of neuroscientific research on culture
and society, the sociology of biomedical knowledge is without a doubt essential.
Second, cautiously and critically accounting for neuroscientific findings can
inform social theorizing and aid in developing and refining key sociological
concepts. Finally, the active engagement in cooperative endeavours with
researchers in social neuroscience may yield methodological advantages and
lead to new, mostly micro-level insights into the physiological underpinnings
and consequences of social structures, processes, and mechanisms.

REFERENCES
Abi-Rached, J. M. (2008). The implications of the new brain sciences. EMBO Reports, 9(12),
1158–1162.
Adolphs, R. (1999). Social cognition and the human brain. Trends in Cognitive Sciences, 3(12),
469–479.
Adolphs, R. (2003). Cognitive neuroscience of human social behaviour. Nature Reviews
Neuroscience, 4, 165–178.
Alcock, J. (2001). The triumph of sociobiology. New York, NY: Oxford University Press.
Arnett, J. J. (2008). The neglected 95%: Why American psychology needs to become less
American. American Psychologist, 63, 602–614.
Bargh, J. A. (1997). The automaticity of everyday life. In: R. S. Wyer (Ed.), The automaticity of
everyday life (pp. 1–61). Mahwah, NJ: Erlbaum.
Bargh, J. A., & Ferguson, M. L. (2000). Beyond behaviorism: On the automaticity of higher
mental processes. Psychological Bulletin, 126(6), 925–945.
Beaulieu, A. (2002). Images are not the (only) truth: Brain mapping, visual knowledge, and
iconoclasm. Science, Technology, & Human Values, 27(1), 53–86.
Bennett, C. M., & Miller, M. B. (2010). How reliable are the results from functional magnetic
resonance imaging? Annals of the New York Academy of Sciences, 1191, 133–155.
Benton, T. (1991). Biology and social science: Why the return of the repressed should be given a
(cautious) welcome. Sociology, 25(1), 1–29.
Berger, P. L., & Luckmann, T. (1966). The social construction of reality. Garden City, NY:
Anchor.
Bogen, J. E., DeZure, R., TenHouten, W. D., & Marsch, J. F. (1972). The other side of the
brain, IV: The A/P ratio. Bulletin of the Los Angeles Neurological Societies, 37(2), 49–61.
Bohnet, I. (2009). Experiments. In: P. Hedström & P. Bearman (Eds.), The Oxford handbook of
analytical sociology (pp. 639–665). New York, NY: Oxford University Press.
Bourdieu, P. (1977). Outline of a theory of practice. New York, NY: Cambridge University
Press.
Bourdieu, P. (1990). The logic of practice. Cambridge: Polity Press.
Brothers, L. (1997). Friday’s footprint. How society shapes the human mind. New York, NY:
HhOxford University Press.
Sociology of Neuroscience or Neurosociology? 275

Burnham, T., & Johnson, D. D. P. (2005). The biological and evolutionary logic of human
cooperation. Analyse & Kritik, 27, 113–135.
Burri, R. V. (2009). Coping with uncertainty: Assessing nanotechnologies in a citizen panel in
Switzerland. Public Understanding of Science, 18(5), 498–511.
Bury, M. R. (1997). Health and illness in a changing society. London: Routledge.
Cacioppo, J., & Berntson, G. G. (1992). Social psychological contributions to the decade of the
brain. American Psychologist, 47, 1019–1028.
Cacioppo, J. T., Berntson, G. G., Sheridan, J. F., & McClintock, M. K. (2000). Multilevel
integrative analyses of human behavior, social neuroscience and the complementing
nature of social and biological approaches. Psychological Bulletin, 126(6), 829–843.
Camerer, C. (2008). Neuroeconomics: Opening the gray box. Neuron, 60(3), 416–419.
Chiao, J. Y. (2009). Cultural neuroscience: A once and future discipline. Progress in Brain
Research, 178, 287–304.
Chiao, J. Y., & Cheon, B. K. (2010). The weirdest brains in the world. Commentary on
Henrich, Heine, & Norenzayan: The weirdest people in the world? Behavioral and Brain
Sciences, 33, 28–30.
Chiao, J. Y., Hariri, A. R., Harada, T., Mano, Y., Sadato, N., Parrish, T. B., & Iidaka, T.
(2010). Theory and methods in cultural neuroscience. Social Cognitive and Affective
Neuroscience, 5(2–3), 356–361.
Chiao, J. Y., Mathur, V. A., Harada, T., & Lipke, T. (2009). Neural basis of preference for
human social hierarchy versus egalitarianism. Annals of the New York Academy of
Sciences, 1167, 174–181.
Choudhury, S., Nagel, S. K., & Slaby, J. (2009). Critical neuroscience: Linking neuroscience
and society through critical practice. BioSocieties, 4, 61–77.
Churchland, P. S. (1989). Neurophilosophy. Toward a unified science of the mind-brain.
Cambridge, MA: MIT Press.
Collins, H. M. (1983). The sociology of scientific knowledge, studies of contemporary science.
Annual Review of Sociology, 9, 265–283.
Conrad, P. (2000). Sociological perspectives on the new genetics. Malden, MA: Blackwell.
Cregan, K. (2006). The sociology of the body: Mapping the abstraction of embodiment. London: Sage.
Dingwall, R., Nerlich, B., & Hillyard, S. (2003). Biological determinism and symbolic
interaction: Hereditary streams and cultural roads. Symbolic Interaction, 26, 631–644.
Dobbs, D. (2005). Fact or phrenology? Scientific American Mind, 16, 24–31.
Dominguez Duque, J. F., Turner, R., Lewis, E. D., & Egan, G. (2010). Neuroanthropology: A
humanistic science for the study of the culture-brain nexus. Social Cognitive and Affective
Neuroscience, 5(2–3), 138–147.
Dumit, J. (2004). Picturing personhood: Brain scans and biomedical identity. Princeton, NJ:
Princeton University Press.
Dunbar, R. I. (2002). The social brain hypothesis. In: J. T. Cacioppo, G. G. Berntson,
R. Adolphs, C. S. Carter, R. J. Davidson, M. K. McClintock, B. S. McEwen,
M. J. Meaney, D. L. Schacter, E. M. Sternberg, S. S. Suomi & S. E. Taylor
(Eds.), Foundations in social neuroscience (pp. 69–88). Cambridge, MA: MIT Press.
Durkheim, E. (1964). The rules of sociological method. New York, NY: Free Press.
Ehrenberg, A. (2009). Weariness of the self, diagnosing the history of depression in the
contemporary age. Montreal: McGill-Queen’s University Press.
Fehr, E., & Gintis, H. (2007). Human motivation and social cooperation: Experimental and
analytical foundations. Annual Review of Sociology, 33(1), 43–64.
276 CHRISTIAN VON SCHEVE

Franks, D. D. (1999). Some convergences and divergences between neuroscience and symbolic
interaction. In: D. D. Franks & T. S. Smith (Eds.), Mind, brain, and society, toward a
neurosociology of emotion (pp. 157–182). Greenwich, CT: JAI Press.
Franks, D. D. (2010). Neurosociology. The nexus between neuroscience and social psychology.
New York, NY: Springer.
Freese, J. (2008). Genetics and the social science explanation of individual outcomes. American
Journal of Sociology, 114, S1–35.
Freese, J., Li, J.-C., & Wade, L. D. (2003). The potential relevances of biology to social inquiry.
Annual Review of Sociology, 29, 233–256.
Freese, J., & Shostak, S. (2009). Genetics and social inquiry. Annual Review of Sociology, 35,
107–128.
Gazzaniga, M. S. (1985). The social brain. New York, NY: Basic Books.
Gerhards, J., & Schäfer, M. S. (2009). Two normative models of science in public: Human genome
sequencing in German and US print media. Public Understanding of Science, 18(4), 437–451.
Guo, G. (2008). Introduction to the special issue on society and genetics. Sociological Methods
and Research, 37, 159–163.
Hackett, E. J., Amsterdamska, O., Lynch, M., & Wajcman, J. (Eds.). (2007). The handbook of
science and technology studies (3rd ed.). Cambridge, MA: MIT Press.
Han, S., & Northoff, G. (2008). Culture-sensitive neural substrates of human cognition: A
transcultural neuroimaging approach. Nature Review Neuroscience, 9, 646–654.
Harmon-Jones, E., & Beer, J. S. (Eds.). (2009). Methods in social neuroscience. New York, NY:
Guilford.
Henrich, J., Heine, S., & Norenzayan, A. (2010a). The weirdest people in the world? Behavioral
and Brain Sciences, 33, 61–83.
Henrich, J., Heine, S., & Norenzayan, A. (2010b). Most people are not weird. Nature, 466,
2910.1038/466029a.
Iacoboni, M. (2009). Imitation, empathy, and mirror neurons. Annual Review of Psychology, 60,
653–670.
Ignatow, G. (2007). Theories of embodied knowledge, new directions for cultural and cognitive
sociology? Journal for the Theory of Social Behaviour, 37(2), 115–135.
Joyce, K. (2008). Magnetic appeal: MRI and the myth of transparency. Ithaca, NY: Cornell
University Press.
Knorr-Cetina, K. (1981). The manufacture of knowledge. An essay on the constructivist and
contextual nature of science. Oxford: Pergamon.
Kriegeskorte, N., Simmons, W. K., Bellgowan, P. S., & Baker, C. I. (2009). Circular analysis in
systems neuroscience: The dangers of double dipping. Nature Neuroscience, 12, 535–540.
Kurath, M. (2009). Nanotechnology governance: Accountability and democracy in new modes
of regulation and deliberation. Science, Technology & Innovation Studies, 5(2), 87–110.
Lieberman, M. D. (2007). Social cognitive neuroscience: A review of core processes. Annual
Review of Psychology, 58, 259–289.
Lippman, A. (1992). Led (astray) by genetic maps, the cartography of the human genome and
health care. Social Science Medicine, 35, 1469–1476.
Littlefield, M. M. (2009). Constructing the organ of deceit: The rhetoric of fMRI and
brain fingerprinting in post-9/11 America. Science, Technology & Human Values, 34, 365–392.
Littlefield, M. M. (2010). Matter for thought: The Psychon in neurology, psychology and
American Culture, 1927–1943. In: L. Salisbury & A. Shail (Eds.), Neurology and
modernity (pp. 267–286). New York, NY: Palgrave.
Sociology of Neuroscience or Neurosociology? 277

Lizardo, O. (2005). The cognitive origins of Bourdieu’s Habitus. Journal for the Theory of Social
Behaviour, 34(4), 375–401.
Logothetis, N. K. (2008). What we can do and cannot do with fMRI. Nature, 453, 869–878.
Lynch, M. (1993). Scientific practice and ordinary action, ethnomethodology and social studies of
science. Cambridge, MA: Cambridge University Press.
Malsch, T. (2001). Naming the unnamable, socionics or the sociological turn of/to distributed
artificial intelligence. Autonomous Agents and Multi-Agent Systems, 4(3), 155–186.
Massey, D. S. (2002). A brief history of human society, the origin and role of emotion in social
life. American Sociological Review, 67, 1–29.
Mateo, M. M., Cabanis, M., Loebell, N. C. E., & Krach, S. (2011). Concerns about cultural
neurosciences: A critical analysis. Neuroscience and Biobehavioral Reviews, 10.1016/
j.neubiorev.2011.05.006
May, C. (2002). The information society. A sceptical view. New York, NY: Cambridge
University Press.
McCabe, D. P., & Castel, A. D. (2008). Seeing is believing: The effect of brain images on
judgments of scientific reasoning. Cognition, 107, 343–352.
Nelkin, D., & Lindee, M. S. (2004). The DNA mystique: The gene as a cultural icon. Ann Arbor,
MI: University of Michigan Press.
Nerlich, B., & Hellsten, I. (2004). Genomics: Shifts in metaphorical landscape. New Genetics and
Society, 23(3), 255–268.
Newton, T. (2003). Truly embodied sociology, marrying the social and the biological? The
Sociological Review, 51(1), 20–42.
Nielsen, F. (1994). Sociobiology and sociology. Annual Review of Sociology, 20, 267–303.
Pickel, A. (2005). The habitus process: a biopsychosocial conception. Journal for the Theory of
Social Behaviour, 35(4), 437–461.
Pickersgill, M. (2009). Between soma and society: Neuroscience and the ontology of
psychopathy. BioSocieties, 4(1), 45–60.
Pickersgill, M. D. (2010). Psyche, soma, and science studies: New directions in the sociology of
mental health and illness. Journal of Mental Health, 19(4), 382–392.
Poldrack, R. (2006). Can cognitive processes be inferred from neuroimaging data? Trends in
Cognitive Sciences, 10(2), 59–63.
Poldrack, R. (2008). The role of fMRI in cognitive neuroscience, where do we stand? Current
Opinions in Neurobiology, 18, 223–227.
Racine, E., Bar-Ilan, O., & Illes, J. (2005). fMRI in the public eye. Nature Reviews Neuroscience,
6, 159–164.
Rees, D., & Rose, S. (Eds.). (2004). The new brain sciences, perils and prospects. Cambridge:
Cambridge University Press.
Reichertz, J., & Zaboura, N. (Eds.). (2006). Akteur Gehirn-oder das vermeintliche Ende des
handelnden Subjekts: Eine Kontroverse. [The brain as social actor – or the alleged end of
the acting subject: A controversy. Wiesbaden: VS-Verlag.
Rinaldi, A. (2009). Homo economicus? EMBO reports, 10, 823–826.
Rizzolati, G., & Craighero, L. (2004). The mirror-neuron system. Annual Review of
Neuroscience, 27, 169–192.
Rose, N. (2003). Neurochemical selves. Society, 41(1), 46–59.
Rose, N. (2010). Normality and pathology in a biomedical age. In: B. Carter & N. Charles
(Eds.), Nature, society and environmental crisis (pp. 66–83). Malden, MA: Wiley-
Blackwell.
278 CHRISTIAN VON SCHEVE

Rose, S. (2006). The future of the brain, the promise and perils of tomorrow’s neuroscience.
New York, NY: Oxford University Press.
Schäfer, M. S. (2009). From public understanding to public engagement: A comparison of mass
media coverage on different science issues. Science Communication, 30(4), 475–505.
von Scheve, C. (2009). Emotionen und soziale Strukturen: Die affektiven Grundlagen sozialer
Ordnung [Emotion and social structures: The affective foundations of social order].
Frankfurt am Main: Campus.
von Scheve, C., & Moldt, D. (2004). Emotion, theoretical investigations and implications for
artificial social aggregates. In: G. Lindeman, D. Moldt & P. Paolucci (Eds.), Regulated
agent-based social systems (pp. 189–209). Berlin: Springer.
von Scheve, C., & von Luede, R. (2005). Emotion and social structures: Towards an
interdisciplinary approach. Journal for the Theory of Social Behaviour, 35(3), 303–328.
Shapin, S. (1995). Here and everywhere, sociology of scientific knowledge. Annual Review of
Sociology, 21, 289–321.
Sloan, P. R. (2000). Completing the tree of Descartes. In: P. R. Sloan (Ed.), Controlling our
destinies, historical, philosophical, ethical, and theological perspectives on the human
genome project (pp. 1–25). Notre Dame, IN: University of Notre Dame Press.
Smith, T. S., & Franks, D. D. (1999). Emergence, reduction, and levels of analysis in the
neurosociological paradigm. In: D. D. Franks & T. S. Smith (Eds.), Mind, brain, and
society, toward a neurosociology of emotion (pp. 3–16). Greenwich, CT: JAI Press.
TenHouten, W. (1997). Neurosociology. Journal of Social and Evolutionary Systems, 20(1),
7–37.
TenHouten, W. D. (1999). Explorations in neurosociological theory. In: D. D. Franks &
T. S. Smith (Eds.), Mind, brain, and society, toward a neurosociology of emotion
(pp. 41–80). Greenwich, CT: JAI Press.
TenHouten, W. D., & Kaplan, C. D. (1973). Science and its mirror image: A theory of inquiry.
New York, NY: Harper & Row.
Turkle, S. (1997). Life on the screen. New York, NY: Simon & Schuster.
Turner, J. H. (2000). On the origins of human emotions. Stanford, CA: Stanford University
Press.
Vidal, F. (2009). Brainhood, anthropological figure of modernity. History of the Human
Sciences, 22, 5–36.
Vul, E., Harris, C., Winkielman, P., & Pashler, H. (2009). Puzzlingly high correlations in fMRI
studies of emotion, personality, and social cognition. Perspectives on Psychological
Science, 4(3), 274–290.
Weisberg, D. S., Keil, F. C., Goodstein, J., Rawson, E., & Gray, J. (2008). The seductive allure
of neuroscience explanations. Journal of Cognitive Neuroscience, 20, 470–477.
Williams, S. J. (2009). A ‘neurosociology’ of emotion? Progress, problems and prospects. In:
D. Hopkins, J. Kleres, H. Flam & H. Kuzmics (Eds.), Theorizing emotions (pp. 245–268).
Frankfurt: Campus.
Wilson, E. O. (1975). Sociobiology. Cambridge, MA: Belknap.
Zaboura, N. (2009). Das empathische Gehirn: Spiegelneurone als Grundlage menschlicher
Kommunikation [The empathic brain: Mirror neurons as a foundation of human
communication]. Wiesbaden: VS.
Zerubavel, E. (1997). Social mindscapes. Cambridge, MA: Harvard University Press.
LOST AND FOUND IN
TRANSLATION: POPULAR
NEUROSCIENCE IN THE
EMERGING NEURODISCIPLINES

Jenell M. Johnson and Melissa M. Littlefield

ABSTRACT

Recent years have seen an explosion in research by scholars from the

social sciences and humanities who apply neuroscience to research in their
home disciplines. One way these ‘neuroscholars’ have engaged in
conversations with neuroscience is by incorporating books of popular
neuroscience into their work. This chapter explores some of the textual
changes that result from the translation of neuroscience to popular
neuroscience, and through rhetorical analysis, examines how popular
neuroscience is used to support claims in emerging disciplines like
neuroeconomics, neuroliterary criticism, neurolaw, and neuroeducation.
An examination of scholarship from several disciplines – including
sociology – reveals that popular neuroscience is often marshaled not as a
translation or accommodation of science, but as science itself via two
primary rhetorical strategies we have termed ‘fact finding’ and ‘theory
building.’

Sociological Reflections on the Neurosciences

Advances in Medical Sociology, Volume 13, 279–297
Copyright r 2011 by Emerald Group Publishing Limited
All rights of reproduction in any form reserved
ISSN: 1057-6290/doi:10.1108/S1057-6290(2011)0000013016
279
280 JENELL M. JOHNSON AND MELISSA M. LITTLEFIELD

INTRODUCTION
I will not mind if you prefer to give my words a twist and just say that consciousness was
invented so that we could know life. The wording is not scientifically correct, of course,
but I like it.
–Antonio Damasio, The Feeling of What Happens (1999, p. 31)

In recent years, a host of ‘‘emerging neuro disciplines’’ have flooded the

academy (Vidal, 2009, p. 9). New fields have affixed ‘neuro’ to traditional
areas of philosophical inquiry (neuroethics, neuroesthetics), humanities
(neurohistory, neuroliterature), and social sciences (neurosociology, neuro-
politics, neuroeconomics, and neuroanthropology). The growing popularity
of neuroscience as hermeneutic and method has been identified as one sign
of the growing influence of neuroscience in the larger global culture, a
phenomenon that has been met with enthusiasm (e.g., Frazzetto & Anker,
2009; Iacoboni, 2008; Lynch & Laursen, 2009; Restak, 2006) and skepticism
(e.g., Abi-Rached, 2009; Marks, 2010). Although the emerging neurodisci-
plines vary widely in subject matter and approach, what draws them
together is the use of the brain as a means to answer old questions and/or to
open up new avenues of inquiry about society, culture, or human behavior.
As the list of neurodisciplines grows, so too do questions about how they
are developing (e.g., Tallis, 2009). One of the biggest questions is how
academics from disciplines outside of the neurosciences – a group we call
‘neuroscholars’ – engage in neurodisciplinary research. Some preliminary
answers, we argue, can be found within the bibliographies of neuroscholar-
ship. Even a cursory glance at these reveals that some of their crucial
information about the brain is taken from books of popular neuroscience
by Antonio Damasio, Joseph LeDoux, Steven Pinker, and Vilayanur
S. Ramachandran. Although these authors are well-respected neuroscien-
tists with active research agendas, bestselling books like Damasio’s
Descartes’ Error (Damasio & Sutherland, 1995) and Ramachandran’s The
Phantom in the Brain (Ramachandran & Blakeslee, 1999) are not academic
science writing (in the sense that they are written for disciplinary colleagues
and subject to double-blind peer review); they are translations. In this
chapter, we provide a brief survey of the issues that accompany the
translation of academic science into popular science. We then show how the
recent explosion of popular neuroscience has been taken up by the emergent
neurodisciplines through rhetorical strategies we have termed ‘fact finding’
and ‘theory building’.
We should note at the outset that we are not social scientists but
humanists by training; accordingly, the shape of this chapter does not fit
Popular Neuroscience in the Emerging Neurodisciplines 281

easily into definitions of either quantitative or qualitative research.

However, what we bring to the table as a rhetorician of science (Johnson)
and a literature and science scholar (Littlefield) is a perspective on the role of
language and interpretation in the formation of knowledge – a perspective
we believe is essential when it comes to interdisciplinary scholarship, itself
by definition an endeavor of translation.

SCIENCE IN TRANSLATION

For decades, academic and political discussions about the public under-
standing of science have used language metaphors to describe the complex
process of transporting technical information to a general audience, most of
whom have no professional training in scientific fields and are not familiar
with their lexicons. Concerns about the public understanding of science
then, have traditionally coalesced around issues of translation and literacy.
This view is well expressed in a 1956 article in the journal Science, which
begins with a translation metaphor and continues into an explicit discussion
of scientific literacy:

Travelers in foreign countries seem sometimes to believe that they will be perfectly
understood if they speak loudly and clearly enough in their own language. Such a fancy
is harmless enough, but it rightly makes ridiculous those who display it. Yet there seems
to be growing up a similar belief which is scarcely less ridiculous but not entirely
harmless-a belief that all the mysteries of science can be made clear to the layman if only
scientists will take the trouble to explain themselves in very simple terms [y] Parts of the
subject must surely remain a closed book to the layman virtually by definition; when he
can read these pages he is no longer a layman but entitled to call himself a scientist,
whether he reaches this status by institutional or private study [y] This applies, of
course, not merely to science but to all learning: superficial knowledge will never be an
effective substitute for real understanding. (Williams, 1956, p. 207)

Although Williams has a remarkably flexible take on what constitutes a

scientist (one is ‘‘entitled’’ to the role when ‘‘he can read these pages’’), his
primary worry about popular science is rooted in the demarcation between
the ‘‘real understanding’’ of the scientist and ‘‘superficial knowledge’’ of the
general audience. Gieryn (1983) famously describes this demarcation as
the ‘‘boundary work’’ of science: the ‘‘attribution of selected characteristics
to the institution of science (i.e. to its practitioners, methods, stock of
knowledge, values and work organization) for purposes of constructing a
social boundary that distinguishes some intellectual activities as ‘non-
science’’’ (p. 782).
282 JENELL M. JOHNSON AND MELISSA M. LITTLEFIELD

We begin with this discussion of boundary work to clarify that we are not
interested in using this chapter to police the boundaries between science and
non-science. We are not interested in criticizing neuroscholars for using
neuroscientific methodologies or chastising them for discoursing about the
brain, an object perceived not to ‘belong’ to the humanities and social
sciences. Neither are we interested in joining Williams to deride popular
science as fake science that does not reflect real understanding. On the
contrary, we are optimistic about the development of the emerging
neurodisciplines, and we are excited by the kinds of creative collaborations
they engender and the transdisciplinarity they inspire. Transdisciplinarity
‘‘does not simply mean laying two or more disciplines next to each other.
Rather, it means to set about a question simultaneously taking into account
visions and methods on the same topic from seemingly different
perspectives’’ (ENSN, 2008, n.p.). Both of us have had the opportunity to
attend the European Network for Neuroscience and Society’s ‘Neuro-
schools,’ for example, which foster unique transdisciplinary collaborations
between neuroscientists, social scientists, and humanists. We are also
consumers of popular science, and popular neuroscience in particular, which
often sparks ideas for research. What concerns us, then, is not so much what
is lost when academic writing is translated for a general audience (i.e., the
‘‘real understanding’’ Williams seeks to preserve). We are concerned instead
with the concomitant ‘gains’: namely, the unqualified claims and theoretical
speculation often found in popular neuroscience, and their rhetorical
mobilization in neuroscholarship as inarguable fact.
Scientists writing for other scientists are – like most academics – held to
stylistic norms that demand careful qualification of claims, narrowness of
scope, and constant attention to potential refutation. Conventions of
academic scientific discourse foreclose bold claims of significance; what a
discovery might mean is ‘‘largely understood’’ by a scientific audience,
argues rhetorician Jeanne Fahnestock (1998, p. 333). Perhaps the most
representative example of the scientific predilection for understatement is
the sly conclusion to James Watson and Francis Crick’s first paper on the
structure of DNA, which states: ‘‘it has not escaped our notice that the
specific pairing we have postulated immediately suggests a possible copying
mechanism for the genetic material’’ (1953, p. 737). A far cry from its
cultural reputation as the voice of certainty, the professional language of
academic science is tentative and riddled with hypotheses, and its
conclusions are always subject to revision.
When the audience for scientific discourse changes from academic to
general, the argument’s purpose shifts from reporting facts to arguing for
Popular Neuroscience in the Emerging Neurodisciplines 283

their value (Fahnestock, 1998). Because popular science writers ‘‘cannot rely
on the audience to recognize the significance of information,’’ it is important
that the writer adjust ‘‘new information to an audience’s already held values
and assumptions’’ (Fahnestock, 1998, p. 334) – a rhetorical move that in the
case of science journalism, for instance, increases the newsworthiness of a
particular finding. Scientific discourse for a scientific audience is primarily
discourse about fact; ‘‘accommodated’’ scientific discourse for a general
audience is primarily discourse about value. The most common values found
in science journalism, Fahnestock explains, are appeals to ‘‘wonder’’ (claims
that a finding is a ‘‘breakthrough,’’ the first of its kind, a monumental
achievement) or appeals to ‘‘application’’ (claims that a finding will save the
public money or save their lives) (p. 334). Although Fahnestock is discussing
journalists, her observation also holds true for scientists writing popular
science books. Neuroscientist Marco Iacoboni, for example, appeals to both
wonder and application in his book Mirroring People: The Science of
Empathy and How We Connect with Others (2008) when he calls mirror
neurons ‘‘tiny miracles,’’ which ‘‘undoubtedly provide, for the first time in
history, a plausible neurophysiological explanation for complex forms of
social cognition and interaction [y] Quite simply, I believe this work will
force us to rethink radically the deepest aspects of our social relations and
our very selves’’ (pp. 6–7).
Far more troublesome than the focus on wonder and application in
popular science, however, are the claims of certainty that often accompany
these translations:
In the space limits of a short notice in a magazine of popularized science, there is no
room for the qualifications a more knowledgeable audience would demand, qualifica-
tions that show the author’s awareness of the criticism and refutation that an expert
audience could raise against his inferences. To protect himself from such refutation, the
scientist-author has naturally hedged his account. But because he fears no such
challenge, the accomodator is far more certain of what is going on. (Fahnestock, 1998,
p. 338)

While this tendency to omit the ‘mays,’ ‘suggests,’ and ‘implies’ of

academic science writing might be of little consequence when the subject is
hibernating bears or the chemical composition of one of Neptune’s moons,
when the subject turns to issues with significant and normative cultural
valence-the relationship between gender and mathematical ability, for
example, the consequences of the certainty gained in translation are
‘‘far from benign’’ (Fahnestock, 1998, p. 340), particularly when such
findings are translated into brain-based education policy (e.g. Jensen, 2005;
Laster, 2007).
284 JENELL M. JOHNSON AND MELISSA M. LITTLEFIELD

And indeed, there are a number of people who would be glad to see recent
neuroscientific findings translated into policy (e.g., Grist, 2009; Thaler &
Sunstein, 2008). Iacoboni, for example, states he ‘‘would like to see at least
an open discussion of the claim that neuroscientific discoveries could and
should actually inform policy making’’ (2008, p. 269). Although Iacoboni
believes that the application of mirror neuron research, particularly research
on the neurobiological correlates of violent behavior, which ‘‘suggests that
our social codes are largely dictated by our biology’’ (p. 269), will benefit
society if implemented in policy, he notes that the American public might
resist this idea as a threat to their autonomy. Although Iacoboni uses the
qualifiers ‘‘suggests’’ and ‘‘largely’’ in the previous sentence, in the sentence
that follows, all uncertainty is removed: ‘‘What should we do with this newly
acquired knowledge? Deny it because it is difficult to accept it? Or use it to
inform policy and make our society a better one?’’ (p. 269). Although
Iacoboni’s goal of a better society is certainly admirable, he neglects
to acknowledge that people may resist the translation from mirror
neuron research to policy because the research itself is still in its infancy
(e.g., Catmur, Walsh, & Heyes, 2007).
The genre of the popular science book exhibits a number of other textual
differences from academic science writing, even when written by a scientist
about his or her own research (Varghese & Abraham, 2004). The first
difference is quite obviously its broader audience (although we might
emphasize that a ‘general’ audience does not exclude an author’s scientific
peers). The second difference, closely related to the first, is that the popular
science book exhibits a markedly different style of writing. Loosed from the
research article’s narrow audience of specialists, books of popular science
frequently exhibit stylistic and organizational features at odds with the rigid
discursive contours of the peer-reviewed article. Perhaps most relevant to
popular neuroscience, however, is the third difference: in addition to a wider
audience and a non-traditional writing style, books of popular science also
engage in theoretical speculation in order to ‘‘draw connections to universal
issues of the human condition’’ and to link their ‘‘research explicitly to broader
human concerns’’ (Varghese & Abraham, 2004, p. 204). In other words, if
research articles work to specialize, popular science books work to universalize.
The popular scientific book provides more than just a snapshot of one
particular claim or study; in addition to presenting its research, the book also
typically argues for its significance, proscribes how it ought to be interpreted,
and invites inquiry that extends far beyond empirically founded claims.
Perhaps nowhere is this tendency toward speculation and universalism
greater than in popular neuroscience devoted to consciousness studies – a
Popular Neuroscience in the Emerging Neurodisciplines 285

field where neuroscience has taken its cue directly from philosophers like
Rene Descartes, Baruch Spinoza, and, more recently, Daniel Dennett and
John Searle. Although consciousness has long been an object of
philosophical investigation, consciousness is a remarkably recent scientific
object: until the 1980s, it was rare to even see the term mentioned in
neuroscience literature (Koch, 2004, p. 4). Research on consciousness,
comments Antonio Damasio in a clear invitation to sociological analysis,
was ‘‘simply not the thing to do before you made tenure, and even after you
did it was looked upon with suspicion. Only in recent years has
consciousness become a somewhat safer topic of scientific inquiry’’ (1999,
p. 7). The appeal to wonder that Fahnestock describes as typical of science
journalism is in no short supply in books of popular neuroscience devoted to
consciousness, and it frequently emerges through the invocation of mystery.
As Damasio writes in The Feeling of What Happens (1999): ‘‘The matter of
mind, in general, and of consciousness, in particular, allows humans to
exercise, to the vanishing point, the desire for understanding and the
appetite for wonderment at their own nature that Aristotle recognized as so
distinctively human. What could be more difficult to know than to know
how we know?’’ (p. 4).
Damasio’s invocation of Aristotle’s human ontology speaks to why some
scholars in the humanities and social sciences have been increasingly drawn
to neuroscience. First, these books often weave philosophy and literature
into their pages and even their titles. Damasio, for example, positions his
books in direct conversation with Spinoza and Descartes, and peppers his
prose with quotes from T.S. Eliot and Shakespeare. Indeed, the books seem
to be written with transdisciplinarity in mind. Consider this passage from
the introduction to Descartes’ Error (1994):

I wrote this book as my side of a conversation with a curious, intelligent, and wise
imaginary friend, who knew little about neuroscience but much about life. We made a
deal: the conversation was to have mutual benefits. My friend was to learn about the
brain and about those mysterious things mental, and I was to gain insights as I struggled
to explain my idea of what body, brain, and mind are about. (p. xviii)

As we see in this passage, Damasio invites the ‘‘wise friend’’ into a joint
investigation into those ineffable qualities of mind, self, subjectivity,
feeling, and behavior that make us distinctly human. Michael Gazzaniga
(2008) has taken up this question with gusto, offering an entire popular
book devoted to the neurobiology of human exceptionalism. Although
works of academic neuroscience would shy away from making claims about
the ‘‘drama of the human condition’’ (Damasio, 1999, p. 316) or claiming to
286 JENELL M. JOHNSON AND MELISSA M. LITTLEFIELD

create a ‘‘new paradigm for the way [women] manage their professional,
reproductive, and personal lives’’ (Brizendine, 2006, p. 162), popular
neuroscience explicitly invites conversations with non-scientists, as its authors
position themselves as co-investigators of timeless questions about what it
means to be human and often seek to directly intervene in social and political
affairs. In the next section, we examine this transdisciplinary conversation in
greater detail, focusing on the ways in which neuroscholars incorporate
popular neuroscience into their arguments.

POPULAR NEUROSCIENCE IN EMERGENT

NEUROSCHOLARSHIP

As we have alluded to thus far, neuroscholarship can be found in any

number of disciplines, from politics to economics, philosophy to history
(Camerer, Loewenstein, & Prelec, 2005; Connolly, 2002; Lieberman,
Shreiber, & Ochsner, 2003; Northoff, 2010; O’Hara, 2004; Roepstorff,
2007; Roskies, 2002; Smail, 2007). Elsewhere, we have discussed the recent
adoption of neuroscience as theory and method in the humanities as a
‘‘neuroscientific turn’’ (Littlefield & Johnson, 2012; see also Roepstorff,
2007). Akin to other theoretical turns (linguistic, computational, material,
etc.), the neuroscientific turn has the potential to change the direction and
scope of humanities and social science research. While the adaptation and
adoption of the neurosciences is certainly not uniform across the neurodisci-
plines, there are several common threads: the use of technologies such as
functional magnetic resonance imaging to answer questions about behavior,
emotion, taste, and perception that were once the purview of the social
sciences and humanities; continual deference to neuroscience as a definitive
approach; and the employment of popular neuroscience as a foundational
literature.
As we have detailed thus far, the translation of academic science to
popular science is often accompanied by appeals to wonder, appeals to
application, unqualified claims of certainty, universalism, and theoretical
speculation. Again, we would stress that we do not believe there is anything
intrinsically troublesome about these characteristics of popular neu-
roscience. Rather, what matters are the claims popular neuroscience
supports, particularly when the universal reach, bold claims, and theoretical
speculation of this emerging canon are marshaled by neuroscholars as fact
instead of as theory. We will expand this point in a moment.
Popular Neuroscience in the Emerging Neurodisciplines 287

Before doing so, it is important for us to note that the difference between
the loaded terms ‘fact’ and ‘theory’ presents an epistemological minefield
that is far beyond the scope of this chapter to fully chart. To our minds,
however, the distinction between the two is a matter of whether information
is used to answer questions (fact) or to ask them (theory), whether
information is used to close the lid on a ‘‘black box,’’ to use sociologist
Bruno Latour’s (1988, p. 1) famous term, or to keep it open. In this last
section, we categorize two ways that neuroscholars use popular neu-
roscience: for fact finding (which is often used to avoid argument) and for
theory building (which often enables argument).
Fact finding relies on and reifies neuroessentialism, a term that ‘‘reflects
how fMRI research can be depicted as equating subjectivity and personal
identity to the brain. In this sense, the brain is used implicitly as a shortcut
for more global concepts such as the person, the individual or the self’’
(Racine, Ofek, & Illes, 2005, p. 160). Take, for example, the scholarly
appropriation of a book such as neuropsychiatrist Louann Brizendine’s
controversial The Female Brain (2006), which argues that women and men’s
brains are ‘‘different by nature’’ (p. 13) and ‘‘produce different realities’’
(p. 7). Brizendine’s book puts a new, fMRI-colored spin on old notions of
gender essentialism, a trend in popular neuroscience that neuroscientist
Cordelia Fine (2008) has termed ‘‘neurosexism.’’ The problem with
neurosexism, Fine argues, is that like other forms of biological reductionism
(locating essential femaleness, for example, in the uterus or in the genes), it
‘‘permits us to sit back and relax, with its seemingly neat explanation of our
social structure and personal lives. The answer, ‘Oh, it’s the brain’, offers a
tidy justification for accepting the status quo with clear conscience’’ (p. 71).
This kind of neurosexism has many consequences for women and, we could
argue, for various feminist activists. One of the most significant consequences
falls under the ‘‘palliative justification motive’’ wherein ‘‘lower status groups
have a remarkable capacity to rationalize what goes against their self-
interests, internalize limiting stereotypes, and find legitimacy in the very
inequalities that hold them back’’ (Fine, 2008, p. 70).
Despite its sweeping conclusions and problematic tendency to localize
gendered behavior in the brain (see also Brizendine, 2010 on the ‘‘male
brain’’), Brizendine’s book has indeed been used by number of scholars to
make equally bold claims about gender difference. A Dutch scholar of
educational leadership, Meta Krüger, for example, writes that Brizendine’s
book, and the research it presents, allows the field to ‘‘at last dispense with
the debates about whether any differences exist and turn the differences to
our advantage, instead of arguing about them’’ (Krüger, 2008, p. 156). This
288 JENELL M. JOHNSON AND MELISSA M. LITTLEFIELD

scholar justifies her choice of popular neuroscience as the key piece of

evidence for her claims by arguing that ‘‘Brizendine’s book is based on the
same knowledge, which stems from more than 1000 scientific studies in the
fields of genetics, molecular neuroscience, fetal and pediatric endocrinology
and neurohormonal development’’ (2008, p. 158). However, instead of
working exclusively with peer-reviewed sources, or at least a mixture, she
continually refers not only to Brizendine’s book, but also to similar popular
science texts such as Moir and Jessel’s Brain Sex: The Real Difference
Between Men and Women (1989), Baron-Cohen’s (2003). The Essential
Difference: The Truth About the Male and Female Brain (1989), and articles
from the magazine Scientific American. Each of these sources is a synthesis
and accommodation of academic and scientific knowledge that veers
toward the neuroessentialism vividly exemplified by Baron-Cohen’s title. In
effect, some neuroscholars deem that they may imbibe the data and insights
from a number of other investigators by simply reading one book. Reading
popular neuroscience becomes a shortcut to a wider, more nuanced field of
research.
Fact finding may also employ neuroscience as the arbiter of a longstanding
debate, as we see in Krüger’s claim that neuroscience can ‘‘at last dispense
with the debates’’ about gender difference instead of engaging with them.
Such argument avoidance generally presents neuroscience as a Latourian
black box that has been so well and placidly described that one need only
look to the popular neuroscience literature to understand a debate’s
ultimate resolution. Consider the ways that this genre is deployed by
Erin Ann O’Hara, Professor of Law at Vanderbilt University, in her essay
‘How Neuroscience Might Advance the Law’ (2004). O’Hara stakes
her position about the relationship between neuroscience and legal scholar-
ship very clearly, stating that ‘‘this essay proffers just a few of the
myriad ways in which neuroscientific knowledge might be able to improve
the law. I approach the topic as a law professor who attempts to incor-
porate knowledge developed in other disciplines into a behavioural
model that informs decisions about legal policy’’ (p. 1677). She goes on to
argue that

In some cases, legal scholars can accept the findings of neuroscience without having to
take a position in the debate about the usefulness of evolutionary theory. Stated
differently, neuroscientific studies are often predicated on hypotheses generated by
applying evolutionary theory to the study of the brain (LeDoux, 1996; Newsome, 1997;
Damasio, 2003). To the extent that scholars are solely interested in the behavioural
phenomenon as it is observed, they are able to bypass the evolutionary psychology
debate. (O’Hara, 2004, p. 1680)
Popular Neuroscience in the Emerging Neurodisciplines 289

Here, neuroscience is said to aid legal scholars by providing answers to

what are typically seen as open-ended questions. In this case, legal scholars
need not join the debates about evolutionary theory. They can simply cite
neuroscience, which (according to O’Hara) already incorporates and
subsumes the controversy. The trouble is that O’Hara provides only
popular neuroscience as evidence: LeDoux’s The Emotional Brain;
Damasio’s Looking for Spinoza; and Newsome’s interview concerning
‘Perceptual Processes,’ which appears as a chapter in Gazzinga’s Conversa-
tions in the Cognitive Neurosciences. Lest the latter appear distinct from
popular neuroscience, we would note that Gazzaniga prefaces his collection
of interviews (which were once published as part of the Journal of Cognitive
Neuroscience) by arguing that these dialogues ‘‘should be brought together
as a unit for the public to enjoy’’ (p. viii).
In neuroeconomics, a similar trend toward fact finding for argument
avoidance is occasionally evident. Take, for example, an essay by
economists Colin Camerer et al. (2005) in which the authors conclude that
‘‘our behavior is strongly influenced by finely tuned affective (emotion)
systems whose basic design is common to humans and many animals
(Joseph LeDoux, 1996; Panksepp, 1998; Rolls, 1999)’’ (p. 11). Again, we
have an evocation of LeDoux, paired with Panksepp’s self-described student
textbook, Affective Neuroscience, and Roll’s popular text The Brain and
Emotion.
Fact finding for argument avoidance works another way as well: as a
means to bolster neuroscience’s claims as they have been reported in the
popular press. In the same neurolaw piece cited above, the author turns to
the controversial technique of ‘brain fingerprinting’ developed by Lawrence
Farwell. Brain Fingerprinting is an EEG-based technique that ostensibly
catalogues the information in one’s brain by recording reactions to stimuli;
according to Farwell, this technique could be used for applications in
homeland security and lie detection (Littlefield, 2009). The trouble is that
the P300 wave, which serves as the basis for Farwell’s claims, can and has
been used to study myriad things, from alcoholism to autism. In O’Hara’s
account, a vast array of scientific research on the P300 wave-as well as
controversies over Farwell’s interpretive results-are collapsed. Disregarding
this context, O’Hara describes the technology thusly:
Aside from providing contributions to the theory of human behaviour, advances in
neuroscience also promise to aid the efforts of the law to better achieve just outcomes. As
an example, advances in neuroscience have made possible the development of ‘brain
printing technology’ that serves as a type of high technology lie detector. (O’Hara, 2004,
p. 1680)
290 JENELL M. JOHNSON AND MELISSA M. LITTLEFIELD

The subsequent footnote does not cite journal articles concerning brain
fingerprinting (which has been debunked by numerous scientists, such as
Rosenfeld, 2005) or even research from Daniel Langleben, Sean Spence or
any number of neuroscientists concerning another imaging technology,
fMRI lie detection. Rather, it references two popular news articles: Alan
Elsner’s ‘New ‘‘brain fingerprinting’’ could help solve crimes’ (2003,
published Rense.com), and Becky McCall’s ‘Brain fingerprints under
scrutiny’ (2004, published on BBCNews.com). Instead of asking or facing
more difficult questions regarding the viability of this technology or its
ethical and constitutional ramifications, O’Hara posits – thanks to the news
articles she cites – that brain fingerprinting is an ‘‘advance in neuroscience’’ –
one that ‘‘promise[s] to aid in efforts of the law to better achieve just
outcomes’’ (p. 1680). What is problematic here is that one form of popular
neuroscience (in this case, Lawrence Farwell’s press releases concerning brain
fingerprinting) is backed by another (i.e., news magazine articles) and used as a
foundation for claims by neurolegal scholars.
In short, fact finding uses popular neuroscience to solidify (neuro)-
science’s hierarchical dominance: science – in this case neuroscience – is
referenced as the ultimate arbiter of debates, as the objective voice in
subjective matters. We use the term hierarchical dominance as a shorthand
for the outcome of the ‘two cultures’ debate of the mid-twentieth century, in
which science is affirmed over humanistic inquiry as the desired and
emulated ‘culture’ (e.g., Wilson, 1998).
Unlike fact finding, what we have termed ‘theory building’ equalizes this
hierarchy by appropriating popular neuroscience as forms of philosophy
that one can argue with or augment. In other words, popular neuroscience is
marshaled as a means to open up questions instead of shutting them down.
A representative example of theory building is the appropriation of Antonio
Damasio’s work in The Feeling of What Happens by literary critic Paul
Eakin, who writes that he was ‘‘inspired’’ by Damasio’s work to approach
neurobiology as a ‘‘new way’’ of reading autobiography (2004, p. 124).
Eakin writes that he ‘‘will be speculating about self in autobiography on the
basis of neurobiological theory that is itself already necessarily speculative,’’
finding examples in Damasio where the eminent neuroscientist acknowl-
edges the limits of the claims he is able to make about consciousness and the
nature of the self (p. 126).
Theory building is not only a phenomenon from literary criticism; indeed,
sociologist Warren TenHouten, one of the first two scholars to publish on
the neuroscience of sociology – and one who, we might add, tends to back
his claims not with popular neuroscience, but with peer-reviewed journal
Popular Neuroscience in the Emerging Neurodisciplines 291

articles – uses Gazzaniga’s popular speculations as the starting point for

rethinking the definition of the self. Here, it is important to note that
TenHouten does not reference Gazzaniga’s hundreds of peer reviewed
articles and book chapters, which have focused on split-brain research and
functional lateralization; he refers only to one popular translation: The
Social Brain: Discovering the Networks of the Mind (1985). According to
TenHouten’s interpretation of Gazzaniga, ‘‘the person, as a conglomerate of
selves, is a ‘sociological entity’’’ (1997, p. 23). This point is useful for
TenHouten’s larger argument concerning the social construction of the
brain as an object; however, TenHouten is careful to distinguish the relative
worth of Gazzaniga’s popular translations from the scientific merit of his
academic work, noting that ‘‘Gazzaniga’s views [about the right and left
hemispheres of the brain] may well have deserved the harsh criticism that
they have received [y], and although he provides no clear epistemological
or scientific foundation for many of his arguments [y], his raw insights into
the social nature of mind, brain, and self is of value’’ (1997, p. 23, our
emphasis). Here, the philosophical merit of Gazzaniga’s work is equated
with (empirically) untested ‘‘raw insight’’ without an ‘‘epistemological or
scientific foundation.’’ In other words, Gazzaniga’s speculations offer
interesting opportunities not just for scientific experiments, but also for
thought experiments. In this case, as in the case of Damasio and Eakin,
theory building makes use of popular neuroscience as a theory upon which
new ideas can be built.
TenHouten’s piece on ‘Neurosociology’ brings us specifically to the field
of sociology, which has been somewhat hesitant to join the emergent
neurodisciplines. Indeed, TenHouten’s essay, which was published well over
a decade ago (1997), discusses what we have called the neuroscientific turn,
albeit via different terminology: he refers to ‘‘ethnoneurologies’’ as
‘‘nascient, interdisciplinary, neuroscientific fields of inquiry’’ (p. 10). While
his theorization of the emergent neurodisciplines is incomplete and
somewhat problematic – he often reaffirms the hierarchical dominance of
the natural sciences, a move that we have already critiqued in this essay –
Tenhouten does assert that neurosociology can and should complicate
neuroscience by disrupting its biologization. Instead of beginning with the
brain, neurosociology ‘‘posits two stages of top-down causation, first from
society to mind, and second from mind to brain’’ (p. 11); that is to say, ‘‘the
brain itself is to some extent socially constructed’’ (p. 11).
More than a decade after TenHouten’s essay first appeared, his appeal for a
neurosociology has been re-envisioned by David Franks’ Neurosociology: At
the Nexus of Social Psychology and Neuroscience (2010). Like TenHouten,
292 JENELL M. JOHNSON AND MELISSA M. LITTLEFIELD

Franks notes the challenge of bridging the disciplinary divide between

sociology and neuroscience, arguing that ‘‘it would be hard to imagine two
fields so different in terms of method, theory, tradition, and practice. But
therein could lie an advantage and that is to break us out of our comfortable
social ‘assumptive order’ and develop insights which may have been
impossible or at least very difficult to develop’’ (p. 2). Whereas TenHouten
relies sparingly on popular neuroscience, Franks relies primarily on this genre
for his introductory, argumentative foundations concerning theories of
emotion and social processes among others. Franks cites Damasio (2003),
Iacoboni (2008), and Gazzaniga (1985) (whom we have already discussed),
alongside Leslie Brothers’ Friday’s Footprint: How Society Shapes the Human
Mind (1997) and Gerald Edelman’s books Bright Air, Brilliant Fire: On the
Matter of the Mind (1992) and Wider than the Sky: The Phenomenal Gift of
Consciousness (2004).
Franks’ investment in popular neuroscience is notably tempered,
however, when, at several key moments, he alludes to the problem of
relying on translations of neuroscience. For example, after offering an
explanation of neuroimaging technologies and their limitations, Franks
notes that ‘‘while neuroscientists are aware of these methodological issues,
the reader needs to be as well’’ (p. 17). Earlier, Franks attempts to represent
the complexity of neuroscientific arguments in his discussion of reduction-
ism in neuroscience and sociology (pp. 10–11), characterizing Antonio
Damasio’s perspectives as even-handed whilst arguing V.S. Ramachandran
to be more biased concerning the reductionism of neuroscience. Damasio is
lauded because he ‘‘rejects the kind of reductionism that minimizes the
importance of social processes,’’ while Ramachandran is chastised because
he ‘‘suggests that there is a consensus about it in neuroscience which [y] is
obviously not the case’’ (pp. 10–11). Here, Franks does explore-albeit
circuitously-the difference between peer-reviewed science and popular
neuroscience; however, he does so by delving into one of the central issues
in neuroscience research via the popular writings of two neuroscientists
without referring to the journal literature. In so doing, he reproduces the
kinds of generalizations for which he chides Ramachandran. Moreover, he
chooses to side with Damasio, the scientist he views as more sympathetic to
his sociological project-a rhetorical move that reveals his own bias instead of
showcasing the complexity of neuroscientific research.
As we have illustrated throughout this section, one of the key challenges
facing Franks (and the emergent neurodisciplines more generally) is the role
and position of popular neuroscience in academic scholarship. Although
some of the nuances of academic neuroscience have been lost in their
Popular Neuroscience in the Emerging Neurodisciplines 293

translation for a general audience, both the science and its accommodations
have proven themselves formidable disciplinary and rhetorical forces in the
neuroscientific revolution. From fact finding for argument avoidance to
theory building, popular neuroscience seems to offer access to scientific
knowledge at the very point when the gulf between epistemic cultures seems
most vast. At the same time, however, popular neuroscience should, can,
and has been balanced with peer-reviewed neuroscience in order to ground
some of its sweeping claims and tendencies toward neuroessentialism. Take,
for example, a neuropolitics essay in which the authors cite both popular
neuroscience and the original scholarship on which it is based in their
discussion of several brain areas involved in the formation of memories and
attitudes. The following example concerns the amygdala and fearful
emotional responses:

The amygdala, a small almond-shaped subcortical structure in the brain, is largely

responsible for the formation of conditioned fear associations. Numerous studies have
shown that damaging this region in rats prevents the formation of new fear associations
and eliminates existing ones (LeDoux, 1996; for a human lesion study, see LaBar,
LeDoux, Spencer, & Phelps, 2005). (Lieberman et al., 2003, p. 687).

Here, popular neuroscience has been translated; yet, it remains

contextualized through the LaBar et al. lesion study that appeared in the
Journal of Neuroscience.

CONCLUSION

As we have illustrated throughout this essay, popular neuroscience has found

purchase in recent neuroscholarship. While there is nothing inherently wrong
with popular neuroscience by Damasio, Pinker, Ramachandran, or LeDoux
(to name but a few luminaries), there is something deeply troubling about the
ways that it is being put to use for ‘fact finding’ in neuroscholarship. An
examination of scholarship from several disciplines – including sociology –
reveals that popular neuroscience is often marshaled not as a translation or
accommodation of science, but as science itself.
With only a handful of publications on the topic, sociology remains on
the periphery of any ‘neuroscientific turn’ and, as such, has the opportunity
to critically examine its use of popular neuroscience as a foundational
literature. As Bernice A. Pescosolido and Jennie J. Kronenfeld (1995) have
argued, ‘‘medical sociology has always had a strong, unwavering, multi-
disciplinary tradition’’ (p. 23), that often allows it to engage with ‘‘the
294 JENELL M. JOHNSON AND MELISSA M. LITTLEFIELD

disparate views and contributions of other disciplines’’ (p. 25). If sociology

begins to form a partnership with neuroscience as a method, it must happen
on sociology’s terms, within its territories, and in a way that recognizes the
adoption of neuroscientific perspectives as part and parcel of the continuing
struggle to equalize the value of qualitative and quantitative research.
We would urge those interested in neurosociology to remember that
beyond fact finding there is theory building: the use of popular neuroscience
to open, not close, argument. In that vein, we want to conclude with
Antonio Damasio and the metaphor of conversation. As we mentioned
earlier, Damasio’s supposition of a ‘wise friend’ speaks to the promise of
theory building as a form of collaboration between neuroscientists (even
textual ones), and neuroscholars (even imaginary ones):

We agreed not to turn the conversation into a boring lecture, not to disagree violently,
and not to try to cover too much. I would talk about established facts, about facts in
doubt, and about hypotheses, even when I could come up with nothing but hunches to
support them. At the outset I made my view clear on the limits of science: I am skeptical
of science’s presumption of objectivity and definitiveness. I have a difficult time seeing
scientific results, especially in neurobiology, as anything but provisional approximations,
to be enjoyed for a while and discarded as soon as better accounts become available. But
skepticisms about the current reach of science, especially as it concerns the mind, does
not imply diminished enthusiasm for the attempt to improve provisional approxima-
tions. (1999, p. xviii)

We would second Damasio’s tandem skepticism and enthusiasm as applied

to the new neurodisciplines. Moreover, as a ‘wise friend’ we might make our
view clear on the limits of translation: we are skeptical that popular science
can or should serve as a shortcut for academic science. But skepticism
about popular neuroscience, especially as it is employed in the emerging
neurodisciplines, does not diminish our enthusiasm for the attempt at
transdisciplinary, interdisciplinary, and/or cross-disciplinary conversations,
nor for the rich and important investigations these may come to instate.

REFERENCES
Abi-Rached, J. (2009). The rise of neurosocieties: The ethical, social, economic, and political
implications of the new brain sciences. EMBO Reports, 9(12), 1158–1162.
Baron-Cohen, S. (2003). The essential difference: The truth about the male and female brain.
New York, NY: Basic Books.
Brizendine, L. (2006). The female brain. New York, NY: Morgan Road Books.
Brizendine, L. (2010). The male brain. New York, NY: Broadway Books.
Popular Neuroscience in the Emerging Neurodisciplines 295

Brothers, L. (1997). Friday’s footprint: How Society shapes the human mind. Oxford: Oxford
University Press.
Camerer, C., Loewenstein, G., & Prelec, D. (2005). How neuroscience can inform economics.
Journal of Economic Literature, 43(1), 9–64.
Catmur, C., Walsh, V., & Heyes, C. (2007). Sensorimotor learning configures the human mirror
system. Current Biology, 17(17), 1527–1531.
Connolly, W. E. (2002). Neuropolitics: Thinking, culture, speed. Minneapolis, MN: University of
Minnesota Press.
Damasio, A. R. (1999). The feeling of what happens: Body and emotion in the making of
consciousness. New York, NY: Harcourt Brace & Company.
Damasio, A. R. (2003). Looking for Spinoza: Joy, sorrow and the feeling brain. Orlando, FL:
Harcourt Brace.
Damasio, A. R., & Sutherland, S. (1995). Descartes’ error: Emotion, reason, and the human
brain. New York, NY: Quill.
Eakin, P. J. (2004). What are we reading when we read autobiography? Narrative, 12(2),
121–132.
Edelman, G. (1992). Bright air, brilliant fire: On the matter of the mind. New York, NY: Basic
Books.
Edelman, G. (2004). Wider than the sky: The phenomenal gift of consciousness. New Haven, CT:
Yale University Press.
Elsner, A. (2003). New ‘brain fingerprinting’ could help solve crimes. Rense.com. Retrieved
from http://www.rense.com/general34/newbrainfingerprinting.htm
ENSN. (2008). Neuroschools. Retrieved from http://www.neurosocieties.eu/Neuroschools/
neuroschools_main.htm.
Fahnestock, J. (1998). Accomodating science: The rhetorical life of scientific facts. Written
Communication, 3(3), 275–296.
Fine, C. (2008). Will working mothers’ brains explode? The popular new genre of neurosexism.
Neuroethics, 1(1), 69–72.
Franks, D. (2010). Neurosociology: At the nexus of social psychology and neuroscience.
New York, NY: Springer.
Frazzetto, G., & Anker, S. (2009). Neuroculture. Nature Reviews Neuroscience, 10(11), 815–821.
Gazzaniga, M. (1985). The social brain: Discovering the networks of the mind. New York, NY:
Basic Books.
Gazzaniga, M. (2008). Human: The science behind what makes us unique. New York, NY:
Harper Collins.
Gieryn, T. F. (1983). Boundary-work and the demarcation of science from non-science: Strains
and interests in professional ideologies of scientists. American Sociological Review, 48(6),
781–795.
Grist, M. (2009). Changing the subject: How new ways of thinking about human behavior
might change politics, policy, and practice. RSA. Retrieved from http://www.theRSA.
org/projects/pro-social-behaviour/social-brain.
Iacoboni, M. (2008). Mirroring people: The science of empathy and how we connect with others.
New York, NY: Picador.
Jensen, E. (2005 [1998]). Teaching with the brain in mind. Alexandria, VA: Association for
Supervision & Curriculum Development.
Johnson, J.M. (in press). The neuroscientific turn: Transdisciplinarity in the age of the brain. Ann
Arbor, MI: University of Michigan Press.
296 JENELL M. JOHNSON AND MELISSA M. LITTLEFIELD

Koch, C. (2004). The quest for consciousness: A neurobiological approach. Greenwood, CO:
Roberts.
Krüger, M. L. (2008). School leadership, sex and gender: Welcome to difference. International
Journal of Leadership in Education, 11(2), 155–168.
Laster, M. T. (2007). Brain based teaching for all subjects: Patterns to promote learning.
Lanham, MD: Rowman & Littlefield.
Latour, B. (1988). Science in action: How to follow scientists and engineers through society.
Cambridge, MA: Harvard University Press.
LeDoux, J. (1996). The emotional brain: The mysterious underpinnings of emotional life.
New York, NY: Touchstone Books.
Lieberman, M. D., Shreiber, D., & Ochsner, O. (2003). Is political cognition like riding a bike?
How cognitive neuroscience can inform research on political thinking. Political
Psychology, 24(4), 681–704.
Littlefield, M. M. (2009). Constructing the organ of deceit: The rhetoric of fMRI and
brain fingerprinting in post-9/11 America. Science, Technology & Human Values, 34,
365–392.
Littlefield, M. M., & Johnson, J. M. (2012). The neuroscientific turn: Transdisciplinarity in the age of
the brain. Ann Arbor, MI: University of Michigan Press (in press).
Lynch, Z., & Laursen, B. (2009). The neuro revolution: How brain science is changing our world.
New York, NY: St. Martin’s Press.
Marks, J. (2010). The neuroskeptic’s guide to neuroethics and national security. AJOB
Neuroscience, 11(2), 4–12.
McCall, B. (2004). Brain Fingerprints under scrutiny. BBC News. Retrieved from http://
news.bbc.co.uk/2/hi/science/nature/3495433.stm
Moir, A., & Jessel, J. (1989). Brain sex: The real difference between men and women. London,
UK: Joseph.
Newsome, W. T. (1997). Perceptual processes. In: M. S. Gazzaniga (Ed.), Conversations in the
cognitive neurosciences (pp. 53–68). Cambridge, MA: MIT Press.
Northoff, G. (2010). Humans, brains, and their environment: Marriage between neuroscience
and anthropology? Neuron, 65(25 March), 748–751.
O’Hara, E. A. (2004). How neuroscience might advance the law. Philosophical Transactions of
the Royal Society of London B: Biological Sciences, 359(1451), 1677–1684.
Panksepp, J. (1998). Affective neuroscience. Oxford: Oxford University Press.
Pescosolido, B. A., & Kronenfeld, J. J. (1995). Health, illness, and healing in an uncertain era:
challenges from and for medical sociology. Journal of Health and Social Behavior,
35(Extra Issue: Forty years of medical sociology: The state of the art and directions for
the future), 5–33.
Racine, E., Ofek, B.-I., & Iles, J. (2005). fMRI in the public eye. Nature Reviews Neuroscience,
6(2), 159–164.
Ramachandran, V. S., & Blakeslee, S. (1999). Phantoms in the brain: Probing the mysteries of the
human mind. New York, NY: Harper Perennial.
Restak, R. (2006). The naked brain: How the emerging neurosociety is changing how we live,
work, and love. New York, NY: Harmony.
Roepstorff, A. (2007, January 17), The neuroturn: challenging anthropology or anthropological
challenge? Lecture delivered at the Lecture Series on Culture and Cognition hosted by
the London School of Economics.
Popular Neuroscience in the Emerging Neurodisciplines 297

Rosenfeld, J. P. (2005). ‘Brain fingerprinting’: A critical analysis. The Scientific Review of

Mental Health Practice, 4(1), 20–37.
Roskies, A. (2002). Neuroethics for the new millennium. Neuron, 35(1), 21–23.
Rolls, E. T. (1999). The brain and emotion. New York, NY: Oxford University Press.
RSA. (2008). The social brain. Retrieved from http://www.thersa.org/projects/social-brain
Smail, D. L. (2007). On deep history and the brain. Berkeley, CA: University of California Press.
Tallis, R. (2009). Neurotrash. The New Humanist, 124(6)Retrieved from http://newhumanist.
org.uk/2172/neurotrash
Tenhouten, W. (1997). Neurosociology. Journal of Social and Evolutionary Systems, 20(1), 7–37.
Thaler, R., & Sunstein, C. (2008). Nudge: Improving decisions about health, wealth, and
happiness. New Haven, CT: Yale University Press.
Varghese, S. A., & Abraham, S. A. (2004). Book-length scholarly essays as a hybrid genre in
science. Written Communication, 21(2), 201–231.
Vidal, F. (2009). Brainhood, anthropological figure of modernity. History of the Human
Sciences, 22(1), 5–36.
Watson, J. D., & Crick, F. H. (1953). Molecular structure of nucleic acids; a structure for
deoxyribose nucleic acid. Nature, 171(4356), 737–738.
Williams, T. (1956). Some limits to popular science. Science, 124(3214), 207–208.
Wilson, E. O. (1998). Consilience: The unity of knowledge. New York, NY: Alfred A. Knopf.
FIELD OF DREAMS: A SOCIAL
HISTORY OF NEUROETHICS

Erin C. Conrad and Raymond De Vries

ABSTRACT
Neuroscience, with its promise to peer into the brain and explain the
sources of human behavior and human consciousness, has captured the
scientific, clinical, and public imaginations. Among those in the thrall of
neuroscience are a group of ethicists who are carving out a new
subspecialty within the field of bioethics: neuroethics. Neuroethics has
taken as its task the policing of neuroscience. By virtue of its very
existence, neuroethics presents a threat to its parent field bioethics. In its
struggle to maintain authority as the guardian of neuroscience,
neuroethics must respond to criticisms from bioethicists who see no need
for the subspecialty. We describe the social history of neuroethics and use
that history to consider several issues of concern to social scientists,
including the social contexts that generate ethical questions and shape the
way those questions are framed and answered; strategies used by
neuroethicists to secure a place in an occupational structure that includes
life scientists and other ethics experts; and the impact of the field of
neuroethics on both the work of neuroscience and public perceptions of the
value and danger of the science of the brain.

Sociological Reflections on the Neurosciences

Advances in Medical Sociology, Volume 13, 299–324
Copyright r 2011 by Emerald Group Publishing Limited
All rights of reproduction in any form reserved
ISSN: 1057-6290/doi:10.1108/S1057-6290(2011)0000013017
299
300 ERIN C. CONRAD AND RAYMOND DE VRIES

INTRODUCTION

In June, 1915, Charles L. Dana, Professor of Nervous Diseases at Cornell

Medical College, took to the pages of the New York Times to express his
professional opinion about women’s suffrage. Written as an open letter to
Miss Alice Hill Chittenden, president of the New York State Association
Opposed to Woman Suffrage, Dana states that he has ‘‘jumped down from
the fence and become definitely opposed to woman suffrage’’ citing the need
to take on ‘‘more serious, more unselfish, and more pressing problems
relating to human welfare’’ (Dana, 1915, p. 14) including ‘‘disease prevention,
infant welfare, mental and moral defectives, immigration, and problems of
our country’s defense.’’ He goes on, ‘‘To me this insistent demand ‘Votes for
Women’ is a distant and selfish cry – an echo of the childish demand: I want
my doughnut, and I want it now!’’ Realizing that Miss Chittenden expects
him to ‘‘say something as a neurologist and one having some experience with
the anatomy and nervous system of women,’’ he describes the differences
between men and women – ‘‘the brain stem of woman is relatively larger, the
brain mantle and basal ganglia are smaller’’ – and concludes that these
differences ‘‘point the way to the fact that a woman’s efficiency lies in a special
field and not that of political initiative or judicial authority in a community’s
organization.’’ He ends his letter by asserting that at least some of those who
actively support women’s right to vote are ‘‘defective mentally’’: ‘‘Measured
by the fair rules of intelligence testing, I should say that the average zealot in
the cause has a mental age of eleven.’’
The story of Professor Dana is a cautionary tale. As we sociologists know,
science is not an objective source of knowledge about the nature of our world.
Rather, the findings of science are shaped by the way the research enterprise is
organized (and paid for) and by cultural ideas about the topic under
investigation (De Vries & Lemmens, 2006, Shapin, 1982, Ben-David &
Collins, 1966). As Dana’s century-old scientific opinion aptly suggests,
neuroscience is not immune to the influence of society and culture. And yet,
despite our awareness of its past shortcomings, the science of the brain
remains compelling. We citizens of the 21st century are amused by Dana’s
deployment of brain science to support his political position, but nonetheless
we remain intrigued by the promises of some neuroscientists to deliver
faultless lie detection using neuroimaging and by claims that our moral
decisions are nothing more than neurochemical reactions.
Convinced by many scientists’ and philosophers’ claims that the brain is
the source of our selfhood (some might say the ‘seat of our soul’), we are
Field of Dreams: A Social History of Neuroethics 301

awed by the findings of neurology and neuroscience. We believe new

discoveries in neuroscience, unlike those in pulmonology or nephrology, tell
us something about the ‘‘biological foundations of who we are, of our
essence’’ (Farah, 2005, p. 34). But today, as in the last century, this belief
gives studies of the brain the power to justify, perpetuate, and extend social
injustice: as the letter from Dana to Chittenden illustrates, the lens of
neuroscience can be used to explain away and justify the disadvantaged
position of women, ethnic minorities, and the poor.
Today, many of us are less credulous than the readers of Professor Dana’s
letter in 1915. Unlike those readers, we are more aware of the political uses
of science and more likely to question the motives of scientists. Reports of
the abuse of research subjects (think Nuremburg and Tuskegee) and the
misrepresentation of data by pharmaceutical companies (think Avandia; see
Harris, 2010) have made us suspicious about the intentions of science. This
kind of suspicion about what happens in the laboratory led to both private
and government regulation of the work of researchers in the 1960s and
1970s (Rothman, 1991).
In the realm of neuroscience, response to the felt need for regulation has
taken the form of a new ethical specialty called ‘neuroethics.’ Emerging
from within bioethics – a profession that is itself just over 40 years old –
neuroethics has taken as its task the policing of the moral boundaries of
the neurosciences. Cognitive neuroscientist Martha Farah, a pioneer in
neuroethics, explains that her new field ‘‘encompasses a large and varied set
of issues’’ among which are: brain imaging and brain privacy, including the
use of imaging for ‘neuromarketing’; enhancement (i.e., the production of
‘better brains through chemistry’); the undermining of personhood and
personal responsibility; and the ability of neuroscience to ‘‘[edge] out the
spirit,’’ replacing religious with biological notions of the self (Farah, 2005,
pp. 34, 39).
The title of this new field is both trendy and useful. Capitalizing on the
popularity of neuroscience, neuroethics has a ‘hip’ feel to it. Lacking the
preposition ‘of,’ it allows for the study of both ‘the ethics of neuroscience’
(the moral evaluation of the conduct and social implications of work in
neuroscience) and the ‘neuroscience of ethics’ (the neural foundations of
moral thought) (Roskies, 2002, p. 21). In this chapter our focus is mostly on
the first variety of neuroethics. We explore how this new ethical subspecialty
found its place among the existing occupations of bioethics and the life
sciences, and we briefly consider how the work of neuroethicists has
influenced the practice of science and medical research.
302 ERIN C. CONRAD AND RAYMOND DE VRIES

FINDING A PLACE FOR NEUROETHICS

Occupations change along with shifts in the kinds of work that society needs
done. These shifts are the result of new technologies as well as new fads and
fashions. In some cases new occupations claim an area of work that is new,
as for example, the job of software engineer. In other cases, a new
occupation takes over an area that was once the responsibility of another
group. This can take the form of squatting – moving into an area
abandoned by another occupation or profession – or it can be more like a
hostile takeover, where a new occupation assumes work currently done by
another professional group. The work of applied ethicists (included here are
both bio- and neuro-ethicists) is regarded by some as the staking out of new
territory in response to unprecedented dilemmas generated by the new
technologies of medicine and medical science. Others – often those who are
the subjects of ethics oversight – see the new ethics professionals as
unwelcome intruders into territory that is rightfully theirs (De Vries,
Dingwall, & Orfali, 2009).
To understand how neuroethics came to be and found its place in the life
sciences, it is important to know the state of affairs before neuroethics
existed. Although the written record of concern with matters ethical in
Western medicine goes back at least as far as the 5th century BCE and the
well-known oath of Hippocrates, bioethics – the parent of neuroethics – is a
young field, a mere 40 years old (Jonsen, 1998; Rothman, 1991). Until the
1960s, the ethical questions generated by medicine and healthcare were
considered to be the rightful concern of the medical profession. The public
believed that ‘medical ethics’ was an area best left to physicians who were,
after all, ideally positioned to identify ethical problems and to develop codes
for the proper conduct of medicine.
In the 1960s and 1970s the world changed. The period was marked by a
series of scandals in medical research including, within the U.S. alone: the
Tuskegee Syphilis Study, in which poor black men were withheld treatment
for syphilis in order to study the disease’s natural course (Brandt, 1978); a
study at the Willowbrook State School, in which children were deliberately
infected with hepatitis (Ingelfinger, 1973); and a study by a doctor from the
Sloan-Kettering Institute, in which live cancer cells were injected into
patients (Freund, 1965; more studies, and problematic studies in other
countries, are described by Beecher, 1966; Pappworth, 1967, and Van den
Berg, 1969). These scandals and new, frightening medical technologies
loosened the hold of the profession on the ethics of medicine. Doctors could
no longer be trusted. Not only were they harming people with unregulated
Field of Dreams: A Social History of Neuroethics 303

experimentation, they seemed unable to set limits on the new machines of

medicine – such as dialysis machines, medical ventilators, and pacemakers –
that were changing the definitions of life and death (Stevens, 2000). A new
set of experts – drawn from theology, law, philosophy, history, literature,
the social sciences, and other health professions – set themselves to
examining the ethics of medicine, medical research, and the life sciences.
Given their concern with ethical issues beyond the clinic, those working in
this new field identified themselves, not as medical ethicists, but as
bioethicists. Medical ethics focused on concepts like medical privacy,
putting patient interests first, and relationships between and among the
healing professions; bioethics expanded that focus, directing attention to
patient autonomy, informed consent and shared decision-making (Keirns,
Fetters, & De Vries, 2009).
It is no coincidence that bioethics appeared in the 1960s, a period marked
by rapid social and cultural change. The ‘spirit of the age’ – marked by
disenchantment with technology and the rise of the ‘rights movements’ – led
to widespread questioning of the power of governments and the authority of
social institutions including medicine, education, religion, and law. In this
cultural climate, medical ethics was seen not as a check on, but an extension
of, the paternalism and power of medicine. Bioethics promised a new, more
critical approach to the ethical problems of health care. As a field drawing
members from several disciplines, bioethics benefitted from the turn toward
interdisciplinarity in the academy (Moran, 2002) that fostered the growth of
several new interdisciplinary endeavors including gender studies, religious
studies and programs focusing on ethnicities and regions of the world.
Taking advantage of the favorable social and academic climate, bioethics
has successfully insinuated itself into the infrastructure of medicine and the
life sciences. Today, to be accredited, hospitals must have a mechanism for
considering ethical issues that arise in patient care; all federally funded
research that involves human beings or animals must be reviewed by a board
constituted to protect the subjects of research; biotechnology corporations
regularly appoint ‘ethics advisory boards’; several institutes for the study
and promotion of bioethics exist, the most well-known of which are The
Hastings Center and the Kennedy Institute of Ethics; governments routinely
establish and/or fund bioethics committees; a plethora of seminars offer
training in bioethics for those who need, or wish, to offer ethical advice;
bioethics courses are now a regular part of the curriculum at universities,
colleges, and medical schools; and journals of bioethics continue to
proliferate. Bioethics has clearly succeeded in claiming an area of expertise
and making its work indispensable to medicine and medical research.
304 ERIN C. CONRAD AND RAYMOND DE VRIES

Who populates the field of bioethics? As we noted above, those who

practice bioethics come from various fields, but, as bioethics has matured,
people from similar backgrounds have grouped together, effectively forming
cliques within the enterprise. This splintering of the field is not new, nor is it
unique to bioethics: sociologists Rue Bucher and Anselm Strauss described a
similar phenomenon in the development of the medical profession in the
United States. In response to the rise of medical specialties and their specific
interests and backgrounds, independent organizations split off from the
American Medical Association (Bucher & Strauss, 1961). The splintering in
bioethics is perhaps even more dramatic, due to the wide range of
backgrounds that the field attracts. In 1970, when bioethics was just finding
its footing in the United States, its predominant professional organization
was the Society for Health and Human Values. The SHHV was a collection of
academics, medics, chaplains, and social workers brought together by shared
concern for welfare of patients and research subjects and collective worry
about the unchecked power of medicine. Forty years later, the SHHV no
longer exists. Bioethics is far more specialized. In the United States alone the
professional associations of bioethics now include: the American Association
for Law, Medicine and Ethics (ASLME) – for lawyers; the American Society
for Bioethics and Humanities (ASBH) – ostensibly for all those who once
belonged to the SHHV; the Society for Bioethics Consultation and the
American Association of Bioethics – primarily for academic and clinical
bioethicists; an emerging Narrative Medicine Society – for those who feel the
ASBH no longer cares about literature and medicine; Public Responsibility in
Medicine and Research (PRIMR) – for professionals who work in research
oversight; and the Association of Professional Chaplains (APC); not to
mention the plethora of organizations internationally. Not surprisingly, this
differentiation has led to questions about the identity of the field and those
who are qualified to represent bioethics in the public domain.

The Return of Hyphenated Ethics

Bioethics began as a hyphenated field. The first use of the term is believed to
be by German author Fritz Jahr in 1927, in the paper ‘‘Bio-Ethik: Eine
umschau über die ethischen Beziehungen des Menschen zu Tier und
Pflanze’’ (‘‘Bio-ethics: a panorama of the human being’s ethical relationship
with animals and plants’’) (Goldim, 2009; Jahr, 1927). Van Rensselaer
Potter (1971) had a similar vision of bioethics as an opportunity to reflect on
the human relationship with the environment. Gradually the hyphen
Field of Dreams: A Social History of Neuroethics 305

disappeared: by 1970, most articles used the term ‘‘bioethics’’ (Google

Scholar, accessed 10/2010). Increased specialization within bioethics
brought with it the temporary return of the hyphen. Responding to
developments in specialty fields within medicine and the life sciences,
subfields of bioethics began to appear in the early 1990s. Like bioethics,
these subfields began life with hyphenated names – gen-ethics, nano-ethics,
neuro-ethics – suggesting, at the outset at least, a certain tentativeness of the
subfield. But in time the hyphen in these subfields went the way of the
hyphen in bioethics.

Genethics
Gen-ethics got its start rather abruptly in 1990 with the funding of the
Human Genome Project (HGP). Recognizing the ethical quandaries that
decoding the human genome might bring, the two governmental organiza-
tions that sponsored the HGP – the U.S. Department of Energy and the
National Institutes of Health – declared that three to five percent of funding
dedicated to human genome research be set aside for the study of the
‘‘Ethical, Legal, and Social Issues’’ (ELSI) of genomic research (Human
Genome Project Information, accessed 8/2010). This seemingly small
percent generated impossibly large sums of money for ethics work. Members
of the disciplines of bioethics – where grants in the range of $10,000 to
$20,000 are typical – now had hundreds of thousands of dollars to spend.
One ethicist wrote, ‘‘This was the largest sum of money ever made available
in bioethics, and immediately we began to pursue it’’ (Andre, 2002, p. 110).
A new (sub)field was born. Not surprisingly, this unprecedented boon
influenced the choice of projects undertaken by bioethicists: as they followed
the money, bioethicists became genethicists (Doucet, 2005).
A cursory review of media reports and academic articles illustrates how
quickly this new field arose. The term ‘genethics’ began to appear in news
articles soon after ‘Human Genome Project’ arrived in print (Google News
Archive, accessed 8/2010). A search of Google Scholar (accessed 8/2010)
shows that there were 17 papers published on ‘genethics’ before 1990, and
more than 270 papers between 1990 and 2000. Along with volumes of
articles, conference papers, and books, genethics also generated a few critics.
One bioethical commentator claimed that the large sums of money made
available by the HGP encouraged people with no expertise in the field to
produce substandard research:

Genethics is hot. Genethics is sexy. Genethics is generating a lot of poorly designed,

repetitive, marginally useful research [y] The availability of funding for genethics
306 ERIN C. CONRAD AND RAYMOND DE VRIES

research is attracting researchers who – in the absence of this cornucopia of financial

resources – would likely never consider pursuing scholarship in this area. (Turner, 2003,
p. 1282)

Knoppers (2005, p. 33) declared that the field overstated ‘‘genetic

exceptionalism’’: the notion that genes deserve special treatment in ethics.
As the first among the hyphenated subfields of bioethics, genethics was
particularly adept at attracting both funding and criticism, features that
have allowed it to be used (as we will see later in this chapter) as both a
positive and a negative example by those building the field of neuroethics.

Nanoethics
Nanoethics – the analysis of the ethics of nanotechnology–emerged around
the turn of the millennium. Unlike genethics (and more like neuroethics)
nanoethics is not a product of ELSI funding. It developed more organically
in response to the growth of its associated scientific field, nanotechnology.
News archives show that the term ‘nanoethics’ appeared slowly. According
to Google News Archive (accessed 8/2010), ‘nanotechnology’ first appeared
in print in 1986, and ‘nanoethics’ was first used in print in 2001 (it was only
at around this time that nanotechnology began to be a ‘hot’ topic within
science). Early articles in nanoethics were often speculative, addressing
concerns associated with not-yet-existent applications. For instance, a paper
by Wade Robison reads like a spy novel or science fiction, cautioning about
the development of nano-listening devices and nano-targeting devices that
could be used to deliberately infect individuals with HIV (Robison, 2004).
Like genethics, nanoethics has its share of critics, most of which focus on its
speculative nature. In fact, at the time of this writing a Google Scholar
search of the term ‘nanoethics’ (accessed 10/2010) yielded four articles
among the top ten hits criticizing the field. All four were written by ethicists
or philosophers (Nordmann, 2007; Dupuy, 2007; Allhoff, 2007; Gordijn,
2005).

Neuroethics
Like nanoethics, neuroethics is closely tied to the object of its attention –
neuroscience – and arrived with the new millennium. Early in his presidency,
George H. W. Bush declared the 1990s the ‘decade of the brain’; his official
proclamation explained that this high honor was given to the brain because
it ‘‘is one of the most magnificent– and mysterious–wonders of creation.’’
(Bush, 1990) Describing the brain as ‘‘the seat of human intelligence’’ the
proclamation affirmed the cultural belief in ‘neuro-exceptionalism’, and
marked neuroscience as the ‘next big thing.’ By the end of 1990s, significant
Field of Dreams: A Social History of Neuroethics 307

developments had been made in neuroscience, neurology, and psychiatry

(Martin, 2002).
A quick survey of media coverage of neuroscience provides a measure of
public excitement about the brain. Between 1990 and 2000, there were more
than 370,000 articles containing the word ‘brain’ (Google News Archive,
accessed 8/2010). A review of the titles of articles on the brain published in
the year 2000 shows the appeal of neuroscience: ‘‘Women use more of brain
when listening, study says’’ (Hotz, 2000), ‘‘Study finds region of brain may
be key problem solver’’ (Angier, 2000), ‘‘Brain chip offers blind another
chance at ‘sight’’’ (Vergano, 2000), ‘‘Brain signals shown to move a robot’s
arm’’ (Blakeslee, 2000), and ‘‘Looking for that brain wave called lovey’’
(Eakin, 2000). The potential of neuroscience seemed infinite, able to explain
everything.
These articles in the popular media fall into two categories. The first
focuses on the promise neuroscience holds for delivering hot, futuristic
technologies like the brain chip for the blind and the brain–robot interface.
The second category explores the value of neuroscience for understanding
human identity – the differences between men and women, how we solve
problems, and the neurochemical sources of love and trust. The belief that
we are our brains is now widely held: ‘‘Now that the brain is well accepted as
the seat of the mind, it takes on additional qualities as the seat of the ‘self,’
the place where our individual personalities reside’’ (Leshner, 2005, p. 1).
The media, the government, and many scientists take it for granted that our
brain is the essence of our identity and believe neuroscience will be able to
discover the exact nature of that identity.
Like Professor Dana’s conclusions about the female brain and women’s
suffrage, there are good reasons to suspect that neuroscience is influenced by
cultural ideas about the brain. Physician-ethicist Joelle Abi-Rached and
sociologist Nikolas Rose describe how the development of modern
neuroscience was in part a response to a social epistemological shift in
how people viewed the brain. They trace the origin of neuroscience to a
desire to throw out the psychoanalytic approach and replace it with ‘‘a more
rigorous method’’ (Abi-Rached & Rose, 2010, p. 27). Singh, Hallmayer, and
Illes (2007) describe what they call ‘‘flocking’’ behavior in response to
science: ‘‘The reactions of the public to scientific discovery are often not
subtle, and can elicit mass, migratory-type social behaviors.’’ They point out
that both the consumers and producers of science are affected by the way in
which scientific results are presented (Singh et al., 2007, p. 153). The more
the public learns about the brain, the more they want to learn. And many
neuroscientists are happy to oblige.
308 ERIN C. CONRAD AND RAYMOND DE VRIES

INTERPRETING THE SHORT HISTORY

OF NEUROETHICS

By 2000, bioethics was well established. Genethics, its oldest offspring, was a
thriving 10-year old, attracting generous amounts of funding. The brain was
the hot new area of study amassing public attention, a development noticed
by well-known American bioethicist Arthur Caplan, who saw what was
happening in genetics and anticipated the rise of the new area of ethical
inquiry:

No area of science is commanding more ethical attention these days than genetics [y]
But lurking over in the disciplinary corner – somewhat out of sight of the ethicists’ gaze –
are the neurosciences. Advances in radiology, psychiatry, neurology, neurosurgery,
bioengineering, and psychology are furthering our understanding of animal and human
brains almost as quickly as genomics is fueling genetics. The brain revolution promises
to be very controversial ethically. (Caplan, 2002, p. 12)

The stars signaling the birth of neuroethics had come into alignment.
In February 2002, The University of Pennsylvania hosted what its website
calls the first national conference on neuroethics, ‘Bioethics and the
Cognitive Neuroscience Revolution.’ The meeting was sponsored by the
Greenwall Foundation, which was founded in 1949 and began funding
bioethics research in 1991 (Greenwall Foundation, accessed 10/2010).
Discussed at the meeting were issues such as theories of the mind, drugs for
cognitive enhancement, and fMRI-based lie detection (Wolpe, 2002). In
May of that same year, Stanford and UCSF co-hosted ‘Neuroethics:
Mapping the Field,’ a conference sponsored by the Dana Foundation. They
missed the opportunity to claim the title of ‘‘first national conference’’ by
two months, but they were able to declare that they hosted the ‘‘first world
conference’’ (Illes & Raffin, 2002, p. 344, emphasis added) by bringing in a
speaker from Oxford (Stanford University, 2002). Topics at this meeting
included the physiology of free will, the neural basis of morality, and
cyborgs in neurotechnology. In September 2003, a conference on
‘Neuroscience and the Law’ was held in Washington, DC, co-sponsored
by the Dana Foundation and the American Association for the Advance-
ment of Science [the organization that publishes the major journal, Science,
and supports many areas of scientific and bioethical research (AAAS,
accessed 10/2010)]. Topics at this meeting included the use of functional
magnetic resonance imaging (fMRI) for lie detection, brain enhancement,
and detecting brain death (Garland, 2003). There was a great deal of overlap
in these meetings, in attendees as well as in topics. Many of those at these
Field of Dreams: A Social History of Neuroethics 309

three meetings became well-known names in neuroethics, including Judy

Illes, Hank Greely, Martha Farah, and Paul Wolpe. The common topics
tended toward the speculative and the abstract, reflecting the similar
interests of the attendees.
The Dana Foundation has played an important role in the birth and
growth of neuroethics. According to Greely (2006) the foundation has been
the major funding source for neuroethics research. The foundation was
established in 1950 by legislator and industry CEO Charles A. Dana (not
Charles L. Dana, the neurologist who opposed women’s suffrage) (Lyford
Cay Foundation, accessed 10/2010). Interestingly, the Dana Foundation
does not traditionally fund bioethics research, but rather research in
neuroscience. Its website indicates its desire to champion the cause of
neuroscience: its overview states that the foundation ‘‘educates the public
about the successes and potential of brain research.’’ Given the organiza-
tion’s role as an enthusiastic supporter of neuroscience, it is noteworthy that
it has also aligned itself with neuroethics, whose role is to examine that
progress with a critical eye and rein in excesses in the field. The Dana
Foundation website has an entire section devoted to neuroethics, including
links to news articles, the Neuroethics Society (NS), as well as neuroethics
programs at Stanford, Penn, Oxford, and The University of British
Columbia. It also includes a link to the neuroethics section of the website
‘‘Neuroscience for Kids,’’ which introduces children to questions such as
‘‘What ifymachines could read your mind?’’ and ‘‘What ifythe brain
could be controlled from a distance?’’ (Dana Foundation, accessed 10/2010;
Neuroscience for Kids, accessed 10/2010).
Not long after the first neuroethics meetings, both graduate and
undergraduate academic-based programs devoted to the study of neu-
roethics appeared. Before its major 2002 conference, the University of
Pennsylvania created a proto-neuroethics program in 1999, titled ‘‘Perspec-
tives on Cognitive Neuroscience: Mind, Brain and Society.’’ Two years after
the Greenwall-funded event, they set up a website in order to provide
information on neuroethics. In 2009 they changed the title of their program
from the ‘Penn Neuroethics Program’ to the ‘Center for Neuroscience and
Society’, implying a wider scope than just ethics (University of Pennsylva-
nia, accessed 8/2010). Stanford developed a similar program within their
larger ‘Center for Biomedical Ethics’. One of the pioneers in neuroethics,
Judy Illes was part of this program until 2007, when she moved to the
University of British Columbia to head their new ‘National Core for
Neuroethics’ (UBC Neurology, accessed 8/2010). The Oxford Centre for
Neuroethics, directed by bioethicist Julian Savulescu, was established in
310 ERIN C. CONRAD AND RAYMOND DE VRIES

2009 and is the first international center of neuroethics in the United

Kingdom (Oxford Centre for Neuroethics, accessed 10/2010).
The logic of the sociology of the professions suggests that next and
inevitable step for neuroethicists was the creation of a professional
organization. In May 2006, a prominent group of neuroethicists formally
organized themselves into a society. The Stanford Report, an online
newspaper for the community of Stanford University offers a brief
description of the meeting at which the decision was taken to found the NS:
On a recent foggy day at the Asilomar conference center in Pacific Grove [CA, USA], 13
experts in ethics, neurology, law and clinical medicine tipped their champagne glasses to
celebrate the birth of a new society. The newly minted Neuroethics Society gives some
heft to a field that Stanford researchers helped found in 2002 [y] Topics addressed by
neuroethics include the use of imaging techniques to predict brain diseases or personality
traits, how researchers respond to anomalies found in the scans of healthy patients and
the long-term use of brain altering drugs. The group got funding from the Dana
Foundation to form the society. (Stanford Report, 2006)

The choice of Asilomar was a calculated one: the founding of the NS at

this location lends credibility to the new academic enterprise by creating a
connection to a well-known meeting – the ‘Asilomar Conference on
Recombinant DNA’ which, in 1975, brought together scientists, lawyers,
and doctors to examine the need for the regulation of biotechnology. It is
seen as one of the first and most important occasions of large-scale
discussion between science and the public (Berg & Singer, 1995). As one of
its participants later observed: ‘‘testimony to the conference’s success are the
frequent calls to resurrect the ‘Asilomar Process’ to resolve the ethical
dilemmas posed by newly emerging ideas and technologies’’ (Berg, 2004).
No respectable academic field (or subfield) lacks a scholarly journal.
Neuroethics has two: American Journal of Bioethics – Neuroscience and
Neuroethics. AJOB-Neuroscience began as a section of The American
Journal of Bioethics in 2007 and became an independent journal in 2010,
edited by Paul Wolpe. Neuroethics was created in 2008, edited by Neil Levy.

Stories We Tell Ourselves, Stories We Tell Others

These are the details of the founding of neuroethics. But how do members of
the new field describe their history? Given that the field is less than ten years
old, it is notable that the history of neuroethics is already contested.
Neuroethicists have different notions about when focused attention on the
ethics of brain science began. Consider the term itself. In his introduction to
Field of Dreams: A Social History of Neuroethics 311

Neuroethics: Mapping The Field, Zach Hall (2002) recounts the epiphany
that lead to the name of the new (sub)discipline. Hall was showing
New York Times columnist William Safire around the campus of the
University of California, San Francisco, who was visiting in his role as Chair
of the Dana Foundation:
[W]e were talking about all the brain research that would be going on there. I said that
we also hoped to have a bioethics center. As we were talking about the need for
discussion of these issues with respect to the brain, Bill suddenly turned to me and said,
neuroethics. It was like that magic moment – ‘plastics’, in the movie The Graduate. Bill
said, ‘neuroethics’, and I thought, ‘that’s it’. It was a recognition that these problems are
so serious and have such broad implications that they deserve a special designation.
(Hall, 2002, pp. 1–2)

But perhaps Safire does not deserve credit for this neologism. In 1973,
Anneliese Pontius published an article in Perceptual and Motor Skills
entitled, ‘Neuro-Ethics of ‘‘Walking’’ In The Newborn’; in it, Pontius
described her concern with the long term neurological effects of ‘walking
exercises’ for newborn infants and the use of ‘baby walkers’ (devices to aid
newborns in walking). More than 25 years before Safire’s ‘‘magic moment,’’
she concludes: ‘‘By raising such questions, attention is focused on a new and
neglected area of ethical concern – neuro-ethics’’ (Pontius, 1973, p. 244)
Much later, in 1989, neurologist Ronald Cranford described the role of the
neuroethicists on institutional ethics committees and philosopher Paul
Churchland offered his reflections on neuroethical questions in 1991.
Contemporary neuroethicists Judy Illes and Thomas Raffin acknowledge
earlier uses of the term – though, curiously, they omit Pontius’ 1973 article,
using a 1993 citation instead (Illes & Raffin, 2002, p. 344):
The first specific references to ‘‘neuroethics’’ and neuroethical issues in the literature
were made a little over a decade ago, describing the role of the neurologist as a
neuroethicist faced with patient care and end-of-life decisions (Cranford, 1989),
philosophical perspectives on the brain and the self (Churchland, 1991), and
neurophysiological and neuropsychological influences on child-rearing and education
(Pontius, 1993).

They go on, however, to identify the ‘‘new’’ neuroethics as something

different, a ‘‘new discipline’’ necessitated by new technologies:
Our responsibility to the pursuit of new knowledge is a historical mandate; beyond the
neuro science, however, with unprecedented capabilities for delving deeper into human
thought in health and disease, our ethical responsibilities have reached a broad new level.
With the proactive work represented by the authors [in volume 50 of Brain and
Cognition], we believe this beginning bodes well for the future of a new discipline devoted
to ‘‘neuroethics.’’ (Illes & Raffin, 2002)
312 ERIN C. CONRAD AND RAYMOND DE VRIES

In telling a story about the birth of the ‘‘new neuroethics’’ that emphasizes
how ‘‘new technologies require new expertise in ethics’’, champions of the field
are appropriating the ‘origin myth’ of bioethics. In their history, Illes and Bird
(2006) make a direct connection with the classic accounts of the rise of
bioethics, linking their field to the concern with ethics that began with the
Nuremberg Code in 1947 and continued to the 1964 Declaration of Helsinki, to
the Tuskegee Syphilis Study in the mid-20th century, to the Belmont Report in
1979 (see also Farah, 2005). These histories allow neuroethicists to define their
field as ‘‘something old and something new’’ (Farah, 2005, p. 39), benefiting
from established work in bioethics while claiming a new area of inquiry.
Use of what can be termed the ‘‘techno-origin myth’’ of their profession
(De Vries, 2007) has the advantage of providing an easy and widely accepted
justification for the work of neuroethics, but it obscures aspects of the larger
context that influence the way that ethics work gets done. In particular,
subscribers to this version of history are less inclined to appreciate the roles
funding and academic organization play in shaping bioethics and neuroethics.
The techno-origin myth also ignores insights from the sociology of the
professions that demonstrate the tendency of professions to become self-
serving, in search of and defending areas of professional jurisdiction (Davies,
2009; Abbott, 1988).

STAKING THE CLAIM: THE STRUGGLE TO FIND A

PLACE FOR A NEW ETHICAL SPECIALTY
As a new field that is poaching from the work of another relatively new
field – bioethics – neuroethics must continually justify its existence. Indeed,
many of the articles written about neuroethics focus on the question of
whether the field should exist at all. Discussion of this question has taken the
form of a sometimes fractious back and forth argument, with advocates
asserting that the field is novel and necessary, whilst detractors argue it is
instead redundant and speculative. Neuroethicists have also been criticized
by other ethicists and some social scientists for focusing on neurotechnol-
ogies that are yet to be developed and have been challenged on their strategy
of allying themselves closely with the object of their oversight, neuroscience.

Is Neuroethics Necessary?

The ethics of the brain seems to fit nicely under the umbrella of bioethics.
This raises the question: does neuroethics bring anything new to the table?
Field of Dreams: A Social History of Neuroethics 313

Pioneers in the field anticipated this question at an early stage, and answers
in the positive are still proffered with a regularity that is indicative of tenor
of these debates. In the inaugural issue of the journal Neuroethics, Neil Levy
asserts that the work terrain of the new field is one not already occupied by
bioethics: ‘‘neuroethics questions, going to the very heart of what it means
to be a human being, have no real analogue in bioethics’’ (Levy, 2008, p. 2).
Levy’s claim about the special nature of the brain and the need for a
separate area of ethical inquiry mirrors arguments made by geneticists and
genethicists a decade before. In 1998, Nobel laureate James Watson, who
helped established the Human Genome Project, boldly stated, ‘‘We used to
think out fate was in the stars. Now we know, in large measure, our fate is in
our genes’’ (quoted in Jaroff, 1989, p. 67). Neuroethicists are cognizant of
those claims and they are also aware that disappointing returns on the
investment made in genetic therapies dampened this early enthusiasm about
the value of the HGP (Wade, 2010). Most notably, the failure of the HGP to
deliver practical therapies rendered much of the speculative work of
genethicists useless. In an effort to ward off unfavorable comparisons to
genetics and genethics, neuroethicist Martha Farah (2005, p. 34) asserts the
greater importance of neuroscience: ‘‘like the field of genetics, neuroscience
concerns the biological foundations of who we are, of our essence. The
relation of self to brain is, if anything, more direct than that of self to
genome.’’ Judy Illes and Eric Racine (2005) also distance themselves from
genetics by asserting the closer connection between brain and self than genes
and self. Investments in genetics and genethics may have proved unwise,
these neuroethicists argue, but studies of the brain will prove worthy.
Neuroethicists highlight the superior promise of neuroscience because,
when it comes to finding funding for their work, neuroethicists want to
borrow a page from genethics. Hank Greely, for instance, has made a case
for a large scale neuroethics ELSI of the kind that so handsomely rewarded
genethicists: ‘‘The U.S. Human Genome Project had a program for studying
the ethical, legal, and social implications (ELSI) of genetics, but no similar
program exists for neuroscience, although we are our brains far more truly
than we are our genomes’’ (Greely, 2007, p. 533). In his chapter ‘From
Genome to Brainnome: Charting the Lessons Learned’, Ronald Green also
points out that ‘‘those working in the field of neuroethics can learn from the
Genome Project’s ELSI program’’ (Green, 2006, p. 105). Although seldom
made explicit, we can be reasonably confident that by ‘learn,’ Green, Greely
and others do not mean to take scholarly lessons from the philosophical
discourse of genethics, but adopt lessons from its practitioners about how to
fund an ever-expanding (sub)discipline.
314 ERIN C. CONRAD AND RAYMOND DE VRIES

Nonetheless, many mainstream bioethicists do not buy the neuroethics

story. Indeed, bioethicists are among the most vocal of the critics of this
endeavor. Bioethicists Wilfond and Ravitsky, for instance, take on the
argument about genetics and neuroethics offered by Illes and Racine’s
(2005): ‘‘By overstating this claim of ‘neuroethics exceptionalism’ the
authors distract attention from the important philosophical and ethical
concerns’’ (Wilfond & Ravitsky, 2005, p. 20). Jonathan Moreno takes the
same line of argument, concluding, ‘‘neuroethics is in some ways old wine in
a new bottle’’ (Moreno, 2003, p.153) Like many bioethicists, these critics
believe that all the ethical questions that arise in the context of neuroethics
could and should be handled in the framework of the older, more
established field of bioethics.

Is Neuroethics Speculative?

Neuroethics has also been criticized for concentrating its worries on

technologies that do not (and perhaps will never) exist. Focus on
technologies in development, be they almost ready for the market or wildly
speculative, is perhaps a good public relations strategy, but it fails to impress
colleagues in the field of ethics.
When we began our search of the literature for this chapter, we attempted
to classify articles into two groups: those analyzing speculative technologies
and those analyzing existing technologies. We quickly found this to be an
impossible task. According to many of the authors of neuroethics articles,
the technologies they discussed were either in use, or just about to be
deployed. Anjan Chatterjee considers a future filled with cosmetic
neurology: ‘‘While the hypothetical case described may seem extreme now,
it might not in the future’’ (Chatterjee, 2006, p. 110). Adam Shriver
describes the technology surrounding genetically engineering livestock to
feel less or no pain: ‘‘we may be very close to, if not already at, the point
[y]’’ (Shriver, 2009, p. 115). William Cheshire talks about giving ‘‘smart
pills’’ to physicians: ‘‘the anticipated availability within the next few years’’
(Cheshire, 2008, p. 594), and Paul Wolpe and colleagues discuss the
potential of using neuroimaging for lie detection: ‘‘Recently, newer methods
[y] show promise’’ (Wolpe, Foster, & Langleben, 2005, p. 39). Technol-
ogies with a radical potential to transform ourselves and our societies seem
always to be ‘just around the corner’.
Bioethicist Joseph Fins noticed this fascination with the speculative
and compared today’s neuroethicists to Sir William Osler and Wilder
Field of Dreams: A Social History of Neuroethics 315

Penfield, pioneers in early 20th century neuroscience. According to Fins,

contemporary neuroethics, unlike the ethics practiced by Osler and Penfield,
‘‘has developed as a speculative philosophy, rather than one grounded in
clinical reality’’ (Fins, 2008, pp. 38–39). He celebrates Osler’s debunking of a
popular theory of the time – that brain differences existed between controls
and convicted criminals – and refers to Osler’s stance ‘‘an example of the
avoidance of hyperbole that should not be lost on today’s neuroethicists’’
(ibid., p. 39). Physicians Peter Whitehouse and Daniel George agree with
Fins’ assessment. In their review of James Bernat’s Ethical Issues in
Neurology (2008, p. 2738) they observe:
Neuroethicists are excessively enamored of the moral dilemmas they believe to be
associated with the use of unproven functional imaging technologies to read minds and
the use of yet-to-be-developed cognitive enhancement drugs to improve them.

Bioethicists Parens and Johnston have a similar concern. They worry that
‘‘keying ethics research to hot areas of scientific research puts bioethicists–
and others–at increased risk of exaggerating how much scientific research
can tell us about who we are’’ (Parens & Johnston, 2007, p. S62).
Wanting to protect their newborn specialty, neuroethicists have taken
these criticisms seriously, replying with examples that illustrate that
neuroethics is not speculative. Responding to Fins in an article bluntly
titled ‘Neuroethics is Not Hyperbole’, Anthony Vernillo reminds his readers
that technological advances in the management of depression and
schizophrenia allow for the coercion of members of this vulnerable
population. Using this decidedly non-speculative example, he points out:
‘‘If neuroethics failed to raise its concerns about the potential harm from
unlimited technological hubris, then it would indeed be an egregious
omission’’ (Vernillo, 2008, p. 58).

Is Neuroethics too Close to Neuroscience?

A feature neuroethics shares with other hyphenated ethics is the close

connection between the fate of the ethics specialty and that of the field
monitored by that specialty. Absent genetics, there is no genethics; absent
neuroscience, there is no neuroethics. This symbiotic relationship is
worrisome to critics of neuroethics. Hubert Doucet, a bioethicist and
theologian, writes ‘‘the type of work bioethicists do calls them to work
closely with scientists; they have to dialogue together. But how to acquire
legitimacy and remain an outsider? This is a concern neuroethicists should
316 ERIN C. CONRAD AND RAYMOND DE VRIES

keep in mind at a point in time where funding will become more and more
accessible’’ (Doucet, 2005).
Evidence of the close relationship between the guarded and the guardians is
not hard to find. Consider the leadership in the field of neuroethics. The board
of the newly minted NS has 14 members, eight of whom work in the fields of
psychology or neuroscience. By comparison, only 11 of the 35 members of the
‘Nanoethics Group’ advisory board are scientists (Nanoethics Group,
accessed 12/2010). The remaining six board members, drawn from the fields
of philosophy, ethics, and law, are generally techno-enthusiasts. Board
member and ethicist Julian Savulescu is, for example, an enthusiastic
supporter of cognitive enhancement. The terms of four board members
expired in February 2011; of the seven candidates picked to serve on the
nominating committee, five work in neuroscience or psychology (Neuroethics
Society Nominating Committee Election Survey, accessed 12/2010, copy
available upon request to authors). It is also noteworthy that the NS holds its
annual meetings in conjunction with the Society for Neuroscience, not with
the largest professional organization of bioethicists (the ASBH). Recall as well
that the Dana Foundation is both a self-proclaimed supporter of neuroscience
and maintains close ties – both financially and through its website – to
neuroethics.
The connection between the material interests of neuroethics and
neuroscience is made clear in a recent article ‘Neurotalk: Improving the
Communication of Neuroscience Research’. Written by a collection of
neuroethicists and science communicators, this article cautions neuroscien-
tists about the way their research is represented to the public:

[S]pecialized communicators are needed to ensure that communication and outreach

activities are of high quality and are well integrated with scientific research programmes.
The public is being exposed to new ways of thinking about neuroscience and society, and
skill is needed to negotiate the promise and hype, the ties between academia and
industry, the occasional disputes among neuroscientists themselves about the legitimacy
of results [y] Research approaches that are used in the social sciences can be used to
shape public engagement. (Illes et al., 2009, p. 68)

Why should neuroscientists take care in their communication with the

public? Illes et al. continue:

With an even stronger commitment to communication, the neuroscience community and

its partners will mitigate or avoid the public backlash and funding freezes that have
taken other areas of science by surprise – including stem cell research, genetic testing and
population screening. (ibid., p. 68)
Field of Dreams: A Social History of Neuroethics 317

In her outline of ‘Neuroethics for the New Millenium’, Roskies echoes

this view: ‘‘For it is only with a nuanced understanding of the science, and a
renewed trust in the goals of neuroscientists, that real progress will be made
on these difficult issues’’ (Roskies, 2002, p. 23, emphasis added). Clearly the
critics’ concerns about the close relationship between neuroscience and its
guardians are well-founded. Here we see neuroethicists making a public plea
to protect the work of neuroscience: in these articles neuroethicists seem
more concerned with calming public fears about neurotechnologies than
with policing ethical excess.

Assessing the Debate

As we have shown (and not surprisingly) the most adamant supporters of

neuroethics have something to gain professionally from the growth of the
field. Judy Illes and Martha Farah, prominent promoters of neuroethics, are
the heads of programs in neuroethics at the University of British Columbia
and University of Pennsylvania. Neuroethics Society board member Hank
Greely – who argued for creating an NIH-supported ELSI program for
neuroscience (Greely, 2007) – is Director of the Stanford Center for Law
and the Biosciences, Chair of the Steering Committee of the Stanford Center
for Biomedical Ethics, Director of the Stanford Interdisciplinary Group on
Neuroscience and Society, and Director of its Program in Neuroethics.
Of course, critics of neuroethics also have their own – though rather
different – ‘professional interests’ at stake. The most prominent critics are
members of departments and societies of bioethics proper. Joseph Fins, who
characterized neuroethics as a speculative field, is on the board of the
Hastings Center, one of the oldest institutes of bioethics. Erik Parens,
another vocal critic, is a senior research scholar at the Hastings Center.
Benjamin Wilfond and Jonathan Moreno are professors of bioethics and
medical ethics.
Why do ‘‘traditional’’ bioethicists find neuroethics objectionable? The
move of neuroethics onto the turf of bioethics fractures the field and
cordons off an area that was once the proper concern of bioethics. This
circumscribes the work of bioethics and draws away funding and employ-
ment that ‘belongs’ to bioethicists. Neuroethics also generates a new round
of criticism that extends from the new ethical specialty to its parent field,
bioethics. In their critical review of Bernat’s book, mentioned above,
Whitehouse and George conclude by denouncing bioethics as a whole: ‘‘In
fact, problems in the field of neuroethics are emblematic of the problems in
318 ERIN C. CONRAD AND RAYMOND DE VRIES

the entire field of bioethics’’ (Whitehouse & George, 2008, p. 2738). Alfred
Nordmann makes a similar move in his 2007 article criticizing nanoethics.
He expands his critique to neuro- and bio-ethics, lumping them all into the
category ‘‘speculative ethics’’ (Nordmann, 2007).

NEUROETHICS TODAY

Despite the family squabbles among ethicists, neuroethics is thriving. The

NS has close to 500 members (Wolpe, 2010, p. 2). There have been over
2,000 articles written about neuroethics, and the number of articles
published per year has been increasing (289 in 2008, 374 in 2009) (Google
Scholar, accessed 8/2010).
There is, however, one measure that suggests future problems for the field:
the media hype surrounding neuroscience has started to decrease. There was
a meteoric rise in news articles published on the brain, peaking at 146,000
results internationally in 2008, but it began to drop in 2009, in which there
were only about 133,000 articles (for comparison, the total number of news
articles published on ‘science’ increased) (Google News Archive, accessed 8/
2010, search terms ‘brain’ and ‘science’). One of the contributing factors to
the birth of neuroethics was the tremendous media attention given to the
brain: will the field persist if the attention goes away?
This drop in media attention may be especially concerning for
neuroethicists given the speculative technologies that have been, and appear
to still be, their mainstay. Continued interest in the speculative is evidenced
in the articles published in the last two issues of AJOB-Neuroscience: a
review of the film Avatar, ‘Human Enhancement for the Common Good-
Using Neurotechnologies to Improve Eyewitness Memory’ (Vedder &
Klaming, 2010), ‘A Neuroskeptic’s Guide to Neuroethics and National
Security’ (a warning about possible abuses of neuroimaging and psychoac-
tive drugs in the name of national security) (Marks, 2010), and ‘State
Neutrality and the Ethics of Human Enhancement Technologies’ (Basl,
2010). Another striking case is one of the most talked about technologies in
neuroethics: the use of fMRI for lie detection. 240 of the 2,400 articles on
neuroethics include discussion of this topic (Google Scholar, 12/2010). As
exciting a scientific possibility this may be, it has not yet been shown to
be valid in a courtroom setting (Kanwisher, 2009). Neuroethics appears
to thrive in response to trendy, futuristic topics in neuroscience. A decline
in media hype surrounding neuroscience could diminish support for
neuroethics.
Field of Dreams: A Social History of Neuroethics 319

The fate of its sister field genethics also bodes ill for the future of
neuroethics. Articles about genethics peaked in 2006, after which the
number declined (Google Scholar, accessed 8/2010)1. Of course the
comparison with genethics may not be predictive. Neuroethics differs from
genethics in its origins. Genethics was born out of direct public support in
the form of large amounts of funding; neuroethics was generated by the
initiative of interested scholars. One might conclude that these sudden and
externally–motivated origins did not prepare genethics to survive on its own
once the initial enthusiasm subsided. Neuroethics, having learned how to get
funding and create attention, has the tools to persist.

CONCLUSION

Neuroethics is gradually carving out its own occupational space. As its

practitioners proceed they can take heart from the fact that it was not so
long ago that bioethics was facing its own share of criticism from both
doctors and philosophers. A 1976 article titled ‘Against Bioethicists’,
published in The Hastings Center Report, expresses concern about the
professionalization of ethics. Writing more than 30 years ago, the author
draws attention to the fact that there are no clearly defined qualifications to
become a ‘bioethicist,’ and noting ‘‘a discipline, or sub-discipline, called
ethics already exists’’ (Steinfels, 1976, p. 19), implying that bioethics – a sub-
sub-discipline – is unnecessary. The author concludes by mockingly
suggesting that perhaps we should open the field to everyone, and he even
includes a card that the reader can print out and sign, certifying that he or
she is a bioethicist.
The story of neuroethics offers insight into the way new occupations find
their way into an established job marketplace. The promoters of neuroethics
have used several strategies to secure a niche among the existing occupations
in ethics and the life sciences. In particular, they have allied themselves with
bioethics by taking the history of bioethics as their own while at the same
time staking out ‘new territory’, asserting that the ethical questions raised by
neuroscience are distinct and not amenable to standard bioethics. This claim
to a portion of the turf once owned by bioethics generated resistance from
members of the more established field, creating the need for neuroethicists to
defend their position. Neuroethicists have also allied themselves closely with
the well-supported field of neuroscience, allowing them to find ways to
sustain their specialty. This strategy provides an indication of how the work
of neuroethicists has influenced the practice of science and medical research.
320 ERIN C. CONRAD AND RAYMOND DE VRIES

As we have seen (Illes et al., 2009, Roskies, 2002) neuroethicists have

become supporters and promoters of neuroscience. As much as neuroethi-
cists claim to guard society from neuroscience’s abuses, they also guard
neuroscience from society’s criticisms. This enables neuroscientists to more
freely push the boundaries on new technologies, piquing public curiosity
and expanding the boundaries of neuroethics.

NOTE
1. Whether the number of news articles for genethics’ associated science field –
genetics – has been increasing or decreasing over the last few years is unclear. A
search performed in August showed a decrease in articles beginning in 2006, but a
more recent search showed an increase (Google News Archive, accessed 8/2010, 10/
2010).

ACKNOWLEDGMENTS

This work was supported in part by a grant (G13 LM008781) to Raymond

De Vries from the National Library of Medicine (of the National Institutes
of Health, USA).

REFERENCES
Abbott, A. (1988). The system of professions: An essay on the division of expert labour. Chicago,
IL: The University of Chicago Press.
Abi-Rached, J., & Rose, N. (2010). The birth of the neuromolecular gaze. History of the Human
Sciences, 23, 11–36.
AAAS. (2011). About AAAS. AAAS. Retrieved from http://www.aaas.org/aboutaaas/.
Accessed on October 1, 2010.
About Us. Greenwall foundation. Retrieved from http://www.greenwall.org/about.htm.
Accessed on October 1, 2010.
Advisory board (2003–2008). Nanoethics Group. Available at http://www.nanoethics.org/
advisoryboard.html. Accessed on December 23, 2010.
Allhoff, F. (2007). On the autonomy and justification of nanoethics. Nanoethics, 1, 185–210.
Andre, J. (2002). Bioethics as practice. Chapel Hill: The University of North Carolina Press.
Angier, N. (2000). Study finds region of brain may be key problem solver. The New York Times.
New York.
Basl, J. (2010). State neutrality and the ethics of human enhancement technologies. AJOB-
Neuroscience, 1, 41–48.
Beecher, H. (1966). Consent in clinical experimentation: Myth and reality. Jama, 195, 34–35.
Field of Dreams: A Social History of Neuroethics 321

Ben-David, J., & Collins, R. (1966). Social factors in the origins of a new science: The case of
psychology. American Sociological Review, 31, 451–465.
Berg, P. (2004). Asilomar and recombinant DNA. The Nobel Foundation, 26. Retrieved from
http://nobelprize.org/nobel_prizes/chemistry/laureates/1980/berg-article.html
Berg, P., & Singer, M. (1995). The recombinant DNA controversy: Twenty years later.
Proceedings of the National Academy of Sciences USA, 92, 9011–9013.
Blakeslee, S. (2000). Brain signals shown to move a Robot’s arm. The New York Times.
New York.
Brandt, A. (1978). Racism and research: The case of the Tuskegee Syphilis Study. Hastings
Center Report, 8, 21–33.
Bucher, R., & Strauss, A. (1961). Professions in process. The American Journal of Sociology, 66,
325–334.
Bush, G. (1990) Presidential Proclamation 6158. In: J. T. Woolley & G. Peters (Eds.), The
American Presidency Project [online]. Santa Barbara, CA. Retrieved from http://
www.presidency.ucsb.edu/ws/?pid=1869. Accessed on August 4, 2011.
Caplan, A. (2002). The brain revolution and ethics. Scientist-Philadelphia, 16, 12–13.
Chatterjee, A. (2006). The promise and predicament of cosmetic neurology. Journal of medical
ethics, 32, 110–113.
Cheshire, W., Jr. (2008). The pharmacologically enhanced physician. Virtual Mentor, 10,
594–598.
Dana, C. (1915). Suffrage a cult of self and sex: The average zealot has the mental age of eleven
and through a cranny sees the dazzling illusion of a New Heaven. The New York Times.
New York.
Dana, N. T. (2011). Donor spotlight: A conversation. The Lyford Cay Foundation. Retrieved
from http://www.lyfordcayfoundation.org/whatsnew.php?cmd¼view&id¼31&pre ¼ y.
Accessed on October 23, 2010.
Dana Foundation. (2011). Retrieved from http://www.dana.org/Default.aspx. Accessed on
October 2, 2010.
Davies, J. (2009). Psychotherapy and the third wave of professionalization. European Journal of
Psychotherapy and Counseling, 11, 192–202.
De Vries, R. (2007). Who will guard the guardians of neuroscience? European Molecular Biology
Organization Reports, 8, S65–S69.
De Vries, R., Dingwall, R., & Orfali, K. (2009). The moral organization of the professions:
Bioethics in the United States and France. Current Sociology, 57, 555–579.
De Vries, R., & Lemmens, T. (2006). The social and cultural shaping of medical evidence: Case
studies from pharmaceutical research and obstetric science. Social science & medicine, 62,
2694–2706.
Doucet, H. (2005). Imagining a neuroethics which would go further than genethics. The
American Journal of Bioethics, 5, 29–31.
Dr. Judy Illes. UBC neurology. Retrieved from http://www.ubcneurology.com/Staff%20-
Web%20Pages/Staff_Web_Pages_JIlles.html. Accessed on August 30, 2010.
Dupuy, J. (2007). Some pitfalls in the philosophical foundations of nanoethics. Journal of
Medicine and Philosophy, 32, 237–261.
Eakin, E. (2000). Looking for that brain wave called love; humanities experts use M.R.I.’s to
scan the mind for the locus of the finer feelings. The New York Times. New York.
Farah, M. (2005). Neuroethics: The practical and the philosophical. Trends in cognitive sciences,
9, 34–40.
322 ERIN C. CONRAD AND RAYMOND DE VRIES

Fins, J. (2008). A leg to stand on: Sir William Osler and Wilder Penfield’s Neuroethics. The
American Journal of Bioethics, 8, 37–46.
Freund, P. (1965). Ethical problems in human experimentation. New England Journal of
Medicine, 273, 687–692.
Garland, B. (2003). Neuroscience and the law. Washington, DC: Dana Press.
Goldim, J. (2009). Revisiting the beginning of bioethics: The contribution of Fritz Jahr (1927).
Perspectives in Biology and Medicine, 52, 377–380.
Google News Archive Search. (2009). Google. Available at http://news.google.com/
archivesearch. Accessed on August 30, 2010.
Google Scholar. (2010). Google. Available at http://scholar.google.com/. Accessed on August
30, 2010
Gordijn, B. (2005). Nanoethics: From utopian dreams and apocalyptic nightmares towards a
more balanced view. Science and Engineering Ethics, 11, 521–533.
Greely, H. (2006). Neuroethics and ELSI: Similarities and differences. Minnesota Journal of
Law, Science & Technology, 7, 599–637.
Greely, H. (2007). On neuroethics. Science, 318, 533.
Green, R. (2006). From genome to brainome: Charting the lessons learned. In: J. Illes (Ed.),
Neuroethics: Defining the issues in theory, practice, and policy. New York, NY: Oxford
University Press.
Hall, Z. (2002). Welcome. In: S. Marcus (Ed.), Neuroethics: Mapping the field. New York, NY:
Dana Press.
Harris, G. (2010). Diabetes drug maker hid test data, files indicate. The New York Times.
New York.
History. (2011). Center for Neuroscience & Society. Philadelphia: University of Pennsylvania.
Retrieved from http://www.neuroethics.upenn.edu/index.php/about-penn-cns/history.
Accessed on August 30, 2010.
Home. The Oxford Centre for Neuroethics. Retrieved from http://www.neuroethics.ox.ac.uk/
home. Accessed on October 1, 2010.
Hotz, R. L. (2000). Women use more of brain when listening, study says; science: They employ
both sides, men just one. But who listens better? That remains a gray area. Los Angeles
Times. Los Angeles.
Human Genome Project Budget. (2004). Human Genome Project Information. Retrieved from
http://www.ornl.gov/sci/techresources/Human_Genome/project/budget.shtml. Accessed
on August 30, 2010.
Illes, J., & Bird, S. (2006). Neuroethics: A modern context for ethics in neuroscience. Trends in
neurosciences, 29, 511–517.
Illes, J., Moser, M., Mccormick, J., Racine, E., Blakeslee, S., Caplan, A., y Mcknight, P.
(2009). Neurotalk: Improving the communication of neuroscience research. Nature
Reviews Neuroscience, 61–69.
Illes, J., & Racine, E. (2005). Imaging or imagining? A neuroethics challenge informed by
genetics. The American Journal of Bioethics, 5, 5–18.
Illes, J., & Raffin, T. (2002). Neuroethics: An emerging new discipline in the study of brain and
cognition. Brain and Cognition, 50, 341–344.
Illes Helps Launch Neuroethics Society. (2006). Stanford report. Stanford University. Retrieved
from http://news-service.stanford.edu. Accessed on August 30, 2010.
Ingelfinger, F. (1973). Ethics of experiments on children. New England Journal of Medicine, 288,
791–792.
Field of Dreams: A Social History of Neuroethics 323

Jahr, F. (1927). Bio-ethik: eine umschau uber die ethischen beziehungen des menschen zu tier
und pflanze. Kosmos. Handweiser fur Naturfreunde, 24, 2–4.
Jaroff, L. (1989) The gene hunt. Time. pp. 62–67.
Jonsen, A. (1998). The birth of bioethics. New York, NY: Oxford University Press.
Kanwisher, N. (2009). The use of fMRI in lie detection: What has been shown and what has
not. In: Using imaging to identify deceit: Scientific and ethical questions. Cambridge:
American Academy of Arts and Sciences.
Keirns, C., Fetters, M., & De Vries, R. (2009). Bioethics and medical education. In: C. Brosnan &
B. Turner (Eds.), Handbook of the sociology of medical education. London: Routledge.
Knoppers, B. (2005). Neuroethics, new ethics? The American Journal of Bioethics, 5, 33.
Leshner, A. (2005). It’s time to go public with neuroethics. The American Journal of Bioethics,
5, 1–2.
Levy, N. (2008). Introducing neuroethics. Neuroethics, 1, 1–8.
Marks, J. H. (2010). A neuroskeptic’s guide to neuroethics and national security. AJOB-
Neuroscience, 1, 4–12.
Martin, J. (2002). The integration of neurology, psychiatry, and neuroscience in the 21st
century. American Journal of Psychiatry, 159, 695–704.
Moran, J. (2002). Interdisciplinarity. London: Routledge.
Moreno, J. (2003). Neuroethics: An agenda for neuroscience and society. Nature Reviews
Neuroscience, 4, 149–153.
Neuroethics: Neuroscience for kids (1996–2011). Retrieved from http://faculty.washington.edu/
chudler/neuroe.html. Accessed on October 2, 2010.
Neuroethics Society Nominating Committee Election Survey. Retrieved from http://www.
surveymonkey.com/s/5VFLCBN. Accessed on December 23, 2010.
Neuroethics: Mapping the Field Conference Reader. (2002) Stanford University. Available at
http://bioethics.stanford.edu/conference/conference_reader.html. Accessed on August
30, 2010.
Nordmann, A. (2007). If and then: A critique of speculative nanoethics. NanoEthics, 1,
31–46.
Pappworth, M. (1967). Human guinea pigs: Experimentation on man. Boston: Beacon Press.
Parens, E., & Johnston, J. (2007). Does it make sense to speak of neuroethics? Three problems
with keying ethics to hot new science and technology. EMBO reports, 8, S61–S64.
Pontius, A. (1973). Neuro-ethics of ‘walking’ in the newborn. Perceptual and motor skills, 37,
235–245.
Potter, V. R. (1971). Bioethics: Bridge to the future. Englewood Cliffs, NJ: Prentice-Hall.
Robison, W. (2004). Nano-ethics. In: D. N. A. Baird & J. Schummer (Eds.), Discovering the
nanoscale. Amsterdam.
Roskies, A. (2002). Neuroethics for the new millenium. Neuron, 35, 21–24.
Rothman, D. (1991). Strangers at the bedside: A history of how law and bioethics transformed
medical decision making. New York, NY: Basic Books.
Shapin, S. (1982). History of science and its sociological reconstructions. History of Science, 20,
157–211.
Shriver, A. (2009). Knocking out pain in livestock: Can technology succeed where morality has
stalled? Neuroethics, 2, 115–124.
Singh, J., Hallmayer, J., & Illes, J. (2007). Interacting and paradoxical forces in neuroscience
and society. Nature Reviews Neuroscience, 8, 153–160.
Steinfels, P. (1976). Against bioethicists. Hastings Center Report, 6, 18–19.
324 ERIN C. CONRAD AND RAYMOND DE VRIES

Stevens, M. L. T. (2000). Bioethics in America: Origins and cultural politics. Baltimore, MD:
Johns Hopkins University Press.
Turner, L. (2003). The tyranny of ‘genethics’. Nature biotechnology, 21, 1282.
Van Den Berg, J. (1969). Medische macht en medische ethiek. Nijkerk: Callenbach.
Vedder, A., & Klaming, L. (2010). Human enhancement for the common good-using
neurotechnologies to improve eyewitness memory. AJOB-Neuroscience, 1, 22–33.
Vergano, D. (2000). Brain chip offers blind another chance at ‘sight’: Computer-driven
prototype creates ‘tunnel vision’ in single test subject. USA Today. McLean, VA.
Vernillo, A. (2008). Neuroethics is not hyperbole. The American journal of bioethics: AJOB, 8,
57–59.
Wade, N. (2010). A decade later, genetic map yields few new cures. The New York Times.
New York.
Whitehouse, P. & George, D. (2008). Ethical issues in neurology. The New England Journal of
Medicine, 359, 2737–2738.
Wilfond, B., & V. Ravitsky, V. (2005). On the proliferation of bioethics sub-disciplines: Do
we really need ‘‘Genethics’’ and ‘‘Neuroethics’’? The American Journal of Bioethics, 5,
20–21.
Wolpe, P. (2002). Conference summary: Bioethics and the cognitive neuroscience revolution.
Penn Bioethics. Philadelphia.
Wolpe, P. (2010). Welcome to the new, independent, AJOB Neuroscience. AJOB Neuroscience,
1, 1–20.
Wolpe, P., Foster, K., & Langleben, D. (2005). Emerging neurotechnologies for lie-detection:
Promises and perils. The American Journal of Bioethics, 5, 39–49.