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Road-maps and Revelations: on the somatic ethics of genetic susceptibility Dr Christopher Groves

ESRC Centre for the Economic and Social Aspects of Genomics (Cesagen), Cardiff University, Cardiff, UK The ESRC Centre for Economic and Social Aspects of Genomics (Cesagen) Cardiff University 10 Museum Place Cardiff CF10 3BG Tel.: +44 (0) 2920 870544 Email: grovesc1@cf.ac.uk

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Road-maps and Revelations: on the somatic ethics of genetic susceptibility

Understanding genomic susceptibility risk has been represented as key to a new era of personalized medicine, in which empowered individuals shape their lives according to a somatic ethics of genetic risk management. Based on a comprehensive analysis of websites and other documents produced by key companies within the personal genomics industry, I argue that the rhetoric of empowerment these companies employ constructs an ideal subject of personal genomics while also expressing tensions implicit within the idea of a somatic ethics based on genetic susceptibility. Using Kaushik Sunder Rajans concept of genomic fetishism, I show how these tensions arise from the relationship the rhetoric of personal genomics constructs between risk and uncertainty, and relate them to broader tensions within risk thinking as a mode of governmentality that extends beyond genomics. Keywords: personal genomics; uncertainty; genomic fetishism

Introduction In analyzing the increasing centrality of the body to contemporary ethics and politics, Nikolas Rose has identified the emergence of a somatic ethics, where the object of concern is the body interpreted as the materialization of the self, and is mediated by new modes of knowledge genetics and genomics, neurology and psychology (Rose, 2007, pp. 26-27). This somaticisation of the subject links up with other forms of subjectification in advanced liberal societies which ensure that biology will not be accepted as fate (p. 26). For example, others have noted how the individual is increasingly enjoined to take the responsibility for being an entrepreneurial self (Petersen & Lupton, 1996) positioned within
a political and ethical field in which individuals are increasingly obligated to formulate life strategies, to seek to maximize their life chances, to take actions or refrain from actions in order to increase the quality of their lives [...] (p. 487)

In addition, action within this political and ethical field is increasingly defined by risk thinking (Rose, 1999), in which the future is rendered legible to institutions and individuals through the lens of actuarial, probabilistic calculation. The individual, at the intersection of somaticisation and these modes of governmentality, is summoned to take care of the future of her body its risks and its potential. The uncertain future is constructed in a particular way as knowable through the tools employed by risk thinking, as malleable to the life-plans of rational individuals, and as demanding from them a commitment to the care of an orderly body. In this way, the confluence of somatic ethics, risk thinking and the entrepreneurial self represents a specific way of producing the future by combining ethics, knowledge and modes of action (Adam & Groves, 2007) Promissory discourses around genomics contribute to this by colouring the uncertain future in shades of anxiety and hope. Hope is supported, in particular, by discourses of genetic susceptibility accompanying the Human Genome Project. Genome-wide association studies (GWAS) and individual whole-genome sequencing (WGS) allow the complex, probabilistic associations between particular phenotypical traits and multiple genes to be explored and tested. These technologies of knowledge
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3 production construct the susceptible individuals future as a non-determined, contingent combination of genetics and environmental influences. Kaushik Sunder Rajan (2006) has suggested, however, that genetic susceptibility, as a way of understanding the future, forms part of circuits of commodification that fetishize the genome. Genomic fetishism is not genetic determinism: it is an understanding of determinacy created when probability reifies into prophecy (p. 163). In this paper, I illustrate how genomic fetishism can be a useful concept for analysing key tensions within a somatic ethics articulated around genomics. I do this by examining how companies selling personal genomic susceptibility testing (PGST) construct such an ethics, alongside an idealised subjectivity, that of the PGST consumer. I explore the ethical injunctions that are implicit or explicit within these representations, lay out how genomic fetishism haunts the futures these companies construct therein, and how this calls into being a particular kind of genomic subject that is somewhat at odds with the idea of an activist, entrepreneurial self guided by a somatic telos. Background and analytical themes Since 2007, a number of companies (particularly in the USA) have been offering susceptibility testing for a variety of complex, common health conditions. These tests represent a new wave of mass-market genetic testing, distinct in terms of their technological infrastructure, theoretical basis and regulatory status from previous generations of susceptibility testing based on a limited number of genes (such as BRCA1 and 2) and from testing for monogenic conditions. These tests build on sociotechnical developments constitutive of genomics as distinct from genetics, and particularly on the genome-wide association study (GWAS), which explores correlations between the incidence of particular variations at single points on an individuals genome (single nucleotide polymorphisms, or SNPs) and the presence of particular phenotypical traits (including pathological ones) ght. After subjecting customers biosamples (typically, spittle or cheekswab) to a genomic assay (a scan of areas where significant variation is known to occur, rather than full genome sequencing), PGST companies compare the results with data from a library of GWAS studies assembled by the company according to its own scientific criteria. Proprietary algorithms are then used to produce risk profiles from this data for a variety of health conditions. Unlike earlier generations of susceptibility tests, PGST is subject to a significant degree of regulatory ambiguity, which has stimulated concern over when and how these tests might be used, how reliable they might be, and what clinical value (if any) they might possess (SACGHS, 2010). The evolution of emerging technologies is often influenced by the expectations which surround them, which may take the form of a regime of hope, often employing highly speculative rhetoric about possible futures (Brown, 2005). In the case of PGST, a regime of hope has been articulated around personalized medicine. Personal genomics has been presented as speeding up the emergence of a universalized preventative medicine, on the basis that, whether in relation to rare, single gene conditions (such as Huntingdons), common, multigenic ones (like diabetes and heart disease) or adverse reactions to particular medicines, we are all at risk for something (Francis Collins, quoted in Beardsley, 1996, p. 102). Individual genotyping for genetic disease risk has been presented by PGST companies as promising major reductions in public healthcare costs (Navigenics, press release, 8/04/08), with pharmacogenomic (effect of genotype on drug response) testing being consistently promoted as the most promising source of

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4 progress (Scott, 2011). Built into personalized medicine is an ethical vision of an openended concern for wellness, for the prolonging of healthy life (Roses phrase, denoting the telos of a somatic ethic), which is reflected here and now in the business models of PGST companies that provide a subscription model of genomic risk testing, in which customers pay to access updates on new GWAS research on SNP associations. However, the plausibility of such future visions is highly contested. The clinical validity (how reliably a given genetic variant is associated with the risk of a specific disease) and clinical utility (whether the test provides information that can be useful in clinical decisions) of GWAS-based analyses has been subjected to significant scrutiny. The promised predictive power of tests has been doubted (e.g. Hall, Mathews, & Morley, 2010; Liu & Song, 2010; Makowsky et al., 2011), and it has been suggested that, compared with phenotypical data, genomic data is a statistically insignificant predictor of disease (Paynter et al., 2010). Still others criticise expectations by focusing on the methodological assumptions of GWAS. Some genomics researchers question whether the common variants approach to mapping susceptibility under GWAS is superior to methods which examine rare variants; whether the complexity of gene-gene is an obstacle to predictive power (McCarthy et al., 2008), or whether the phenomenon of missing heredity surrounds GWAS-based risk scores with a significant and unquantifiable amount of uncertainty (Tomasson, 2009; Zuk et al., 2012). Finally, as the scientific corpus on which testing draws has new studies added to it, risk scores for a given SNP or SNPs may be revised or even reversed, along with any corresponding classification of an individual as being, for example, high or low risk (Bunnik et al., 2011, p. 7). The potency of the hopes surrounding PGST in the face of such scepticism is perhaps sustained by assumptions rooted within other social practices. The rhetorical force of expectations surrounding personal genomics derives in part from the increasing legitimacy ascribed to risk thinking (Rose, 1999) within and across a variety of social domains. Interpreted as a form of governmentality, risk thinking can be seen as an extension of rationalisation (Turner, 1993) that retains its typical commitments, such as a reliance on instrumental reason as a criterion of public rationality, strict consequentialism in ethics, and promotion of scientific methods of investigation based on experimental tests of naturalistic hypotheses. Risk thinking exemplifies one of the main goals of rationalisation to render the world legible, quantifiable and governable by mapping and gridding the future. Using concepts from probability theory and welfare economics, it constructs concepts of the expectation value of possible events, domesticating an uncertain future by quantifying uncertainties and rendering them commensurable (Espeland & Stevens, 1998). Risks, fixed in the form of expectation values, can be treated denotatively as objective entities which, once identified, can be subjected to further scientific investigation. At the same time, the field of uncertainties in which they are located tends to become reified alongside them (Wynne, 1992). Once identified, quantifiable risks form a bridgehead from which background uncertainties can be represented as fixed and remediable in relation to those risks already identified, becoming known unknowns in the process. The implicit hope within risk thinking is that to view the future through the lens of risk is not simply a useful means of managing uncertainty, but is also a way of objectively reducing uncertainty: a legible future is a tameable one. Yet this is a questionable assumption: uncertainty can also be dynamic and shifting: research does not necessarily lead to a reduction in uncertainty, but may instead displace and/or even deepen it (Schummer, 2001). Beyond the rationalised, denotative meaning of risk, its connotative significance lies in the project of establishing a stable distinction between

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5 knowable risk and a residual territory of unknown possibilities, thus keeping at bay the suspicion that risk knowledge is a temporary island in a shifting sea of irremediable uncertainty (Groves, 2009). As an extension of this symbolic meaning, the distinction between reified categories of risk and uncertainty can become transformed into one between moral categories, as has been documented in public health discourse. Examples of such moralized distinctions based on risk versus uncertainty are those between controlled/unruly and rational/emotional patients (Petersen & Lupton, 1996, p. xii), or between anxious, endangered individuals subject to uncontrollable biological processes, and rational, distanced, risk-aware subjects who reduce their exposure to danger by managing their health risks (Crawford, 2004). Similar categories which support ascribing individual responsibility for risk have been mapped within womens representations of themselves as risk managers of their own propensities for breast cancer (Robertson, 2000), and in how blame is applied to women who do not practice supposedly preventive measures (Parker, 1995, pp. 320-321; Press et al., 2000, p. 241). These examples demonstrate that, for risk thinking, what counts as acting responsibly in the face of an uncertain future is generally read off the reified, scientific definition of risk, but also that the reified understanding of risk then also becomes morally sanctified. To be responsible is to strive to eliminate, reduce or otherwise control contingencies, guided by a calculus of risk. Consequently, the scientific definition of risk is retrospectively baptised as the foundation of a specific moral order, identified by Rose and others with neoliberalism. However, if uncertainty is treated analytically as having a range of potentially dynamic meanings rather than just a single one (risk), this ethical framing is inadequate (Groves, 2009). Where uncertainty is experienced as reflexive, for example, efforts at risk management may intensify uncertainty as easily as reduce it. The calculable future defined by assessments of risk is shown to rest on a perspective illusion, in which the future appears as a stationary field of possibilities. What this ignores is how risk management itself reflexively transforms the future in unpredictable ways (Orlan, 2010). One might expect, then, different treatments of uncertainty to underlie distinct ethical positions regarding how to deal with hazards to health, or more widely. In the remainder of this section, I explore this idea by considering some ways in which social science research has shown how the incorporation of genetic and genomic knowledge within healthcare creates tensions within public health discourse, centring on how risk and uncertainty should be dealt with. Knowledge Testing for susceptibility to conditions like breast cancer, based on the presence of certain mutations in BRCA1 and BRCA2 genes, has been the subject of a broad body of social science scholarship that has emerged since the late 1980s. This research has drawn on scholarship that has shown how risk thinking in healthcare has transformed individuals into loci for series of risk data that represent the environment in which health risks are determined. Elements of this environment include psychological, physical and social data, together with lifestyle (Petersen & Lupton, 1996, pp. 4-5, 15). The risk conferred by particular genetic mutations or (in post-genomic discourses) polymorphisms forms part of this environment. Genetic/genomic risk enables a diverse range of institutions and agencies to re-constitute and govern the

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6 population as a set of risky individuals and to encourage them to participate in their own governance (Raman & Tutton, 2009, p. 5). However, using genetic susceptibility information to support such efforts is problematic. Commenting on models of breast cancer risk, Press et al. (2000, p. 242) note that risk information may create new uncertainties because, as it is based on epidemiological studies, it is ostensibly meaningful only on a population level and not for an individual woman attempting to understand her own risk; nonetheless, this information tends to be conveyed as exact, certain and tailored to the individual. The idea that risk information is tailored to the individual has been contested by Gould (1985, p. 521), who discusses the difference between epidemiological data and individual prognosis. The key point of uncertainty here is to what extent the individual should be considered a representative member of the population(s) from which risk data is sourced, and whether, therefore, positing a direct link between population data and individual risk may commit the ecological fallacy (Clancy, Berger, & Magliozzi, 2003). Changing circumstances, including individual actions to manage risk, may move the individual into an entirely different population with a different risk profile (Crawford, 2004), in effect changing the supposedly stationary future mapped by risk data. Although the promise of genomics has been identified as molecular precision (Rose 2007 p. 19), i.e. to enable the exact contribution of an individuals genotype to his or her risk of a developing a condition to be determined, to establish associations between multiple SNPs and a given disease still relies on genetic epidemiology, in which different and conflicting research programmes (e.g. focusing on rare vs. common variants) have emerged. Action Commentators on programmes of genetic screening for BRCA mutations have noted that a common assumption behind them was that a better understanding of risk will inevitably drives individuals to de-risk their lifestyles, (Lock, 1998, p. 13). However, it has also been noted that such expectations have proven problematic, as individuals are generally not motivated by the provision of genetic information alone (Collins, Wright et al. 2011). Indeed, more information may create additional uncertainties that translate into unwanted forms of action, as has been observed in the case of risk spirals, where the generic quality of data stimulates a desire for more data, together with monitoring, extra visits to physicians and so on, all of which may, together, produce more anxiety (Press, et al., 2000). If quantification alone does not domesticate uncertainty, the symbolic function of risk as a moral category may do so, however. It has been suggested that, when faced with reflexive or spiralling risk uncertainty, risk thinking can provide ritualized, symbolic practices that serve to restore plausible coherence to the individuals relationship with her health, and to public health practices more generally by ensuring that contingency is at least symbolically tamed. Crawford (2004) analyses three oppositions which emerge around the distinction between tamed and untamed uncertainty as ways of re-ordering the social world around the symbolic coordinates of risk thinking: possible events construed as unpredictable dangers versus predictable risks; anxious endangered individuals, versus rational, risk-aware subjects; and lay prejudice versus scientific expertise. These symbolic categories allow the boundary between order and disorder to be policed, with the aim of establishing and maintaining behavioural norms of individual responsibility.

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7 Nonetheless, this symbolic dimension of risk thinking in healthcare may also prove problematic. Genetic susceptibility creates asymptomatic individuals, called to become self-monitoring risk managers, a necessarily open-ended vocation. It has been suggested that this kind of open-endedness may be psychologically problematic, given the typical symbolic patterning of health practices in Western cultures. Culturally prevalent health narratives (Frank, 1998) tend to be structured around a passage from illness to health that can best be described as restitutive (Wong & King, 2008). But the narrative of individual responsibility for risk does not fit with these cultural categories. Predictions of risk represent temporally abstract futures, without specifiable location in time, which may undermine individuals identification with particular modes of acting and models of behaviour that are constitutive of their understanding of and attitudes towards their own health (Jain, 2007, p. 79), and which express attachment to lived futures (Adam and Groves 2007, p. 128). Ethics The tensions between the forms of knowledge genetic/genomic forms of risk thinking constructs and the modes of action it promotes also give rise to further tensions that affect its deepest values, and in particular its characteristic ways of representing individual responsibility. Somatic ethics, with its telos of avoiding risk and optimizing health, links with pre-existing practices and concepts constitutive of the entrepreneurial self (Petersen & Lupton, 1996), at the same time as it links up with risk thinking. Disclosures regarding genetic susceptibility pass to the individual a responsibility, not just to the self, but more specifically to its always to-be-anticipated future (Adams, Murphy, & Clarke, 2009). As a result, the subject of genetic risk, it has been suggested, may be transformed into a perpetual patient (Finkler, 2000), for whom personal vigilance and submission to external regimes of monitoring are associated, in symbolic terms, with order and rational, utility-maximizing behaviour. The ethical universe of risk thinking in which the difference between good/orderly and bad/disorderly bodies is produced remains, therefore, one where final confirmation of where the individual belongs is always pending. If an epistemological gap persists between epidemiological data and the individual case (even in genomics, where the fulfilment of its promise of molecular precision remains deferred), then a properly ethical gap opens up too within the concept of individual responsibility for genetic risk. The reason for this is that responsibility for ones heath is ceaselessly projected into the future perfect tense. I may have been responsible yesterday and today (e.g. by following expert recommendations on diet and exercise appropriate to the segment of the at-risk population to which to date I have been assigned, thanks to my genotype) but whether I will have been responsible or not is a question that is always to be settled. Lowered risk, or optimal health, remains always to be achieved. They thus represent intrinsically unreachable regulative ideals, distinct from traditional deontological moral categories, where membership of symbolic categories (good or bad) is settled on the basis of whether one acts in conformity with a fixed law. Where ethics enjoins us to live up to a regulative ideal, there is always uncertainty as to whether one has pursued the ideal correctly (iek, 1996, p. 119), reproducing uncertainty and with it a potential for anxiety.

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8 PGST and genomic subjects: genomic essentialism, anti-essentialism and fetishism I have shown how risk thinking in healthcare can be interpreted as an attempt to construct a somatic ethics, which includes within it a risk subject enjoined to live by such an ethics. Drawing on research on the dilemmas characteristic of a previous generation of genetic testing, I have explored why such a goal may be problematic, thanks to the static characterisation of uncertainty central to risk thinking, and which is inherited by its genetic and genomic expressions. In this section, I explore in detail how the tensions I have described are reflected in the discursive efforts of the new wave of susceptibility testing companies to construct a coherent telos for PGST, along with an ideal consumer who will pursue it. The need for them to deal with these tensions within the ways they represent the value and promise of their services is reinforced by the political economy of PGST, which positions individuals as passive consumers at the same time as companies extol the future of personalized medicine as one in which individuals will take control of their health. I trace below how four PGST companies are negotiating the ethical territory opened up by susceptibility risk thinking, and how they do this via particular rhetorical strategies, including elision and distinction (Roberts & Throsby, 2008). The structure of our empirical analysis mirrors that of our analysis in the previous section: beginning by examining the how representations of genomic knowledge contribute to making up PGST subjects, I then look at the modes of action required of the ideal genomic subject, and finally, explore the ethical frameworks which PGST companies construct around post-genomic life. The complete picture resulting from this analysis is one of a idealized subject and a somatic ethics for which hope is central, yet one which constantly tries to head off anxiety and the prospect of passivity inherent in the political economy of healthcare genomics. Approach The empirical analysis is based on a corpus of 245 public documents, covering four companies (23andMe, deCODEme, Navigenics, and Pathway Genomics), with 23andMe being the most represented (80 items). These included an extensive sample of company webpages, onlne staff interviews, articles by staff, and other public documents such as testimony to US Congress committees. To provide a more comprehensive historical view, I used the Internet Archive (internetarchive.org) to index versions of the companies websites at quarterly intervals (where available). References to webpages are given below in the text in the form [site, page title, date range], where the date range indicates the dates of the earliest and the most recent instances of the quoted text found. Documents were coded using NVivo 8 in order to map how companies representations of the consumers of their tests have evolved. Some limitations of our approach should be noted. The Internet Archive does not preserve webpages from Navigenics.com, as the company website is configured to prevent bots (automated software applications) from indexing its content. Nonetheless, the company archives its press releases online, and a number of past interviews with senior staff were also available.

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9 Essentialism and anti-essentialism I begin with the ways in which PGST companies have constructed a relationship between genomic knowledge and identity. The companies studied have generally taken care, from the outset (23andMe, deCODEme and Navigenics all launched in November 2007, Pathway in June 2009) to avoid outright genetic determinism in their online and other published content. There are exceptions, such as citations of discoveries of a gene for multigenic diseases (e.g. Pathway, Front Page, 12/06/09). Nonetheless, the link between genomics and identity made by PGST companies tends to exhibit genetic essentialism, by representing the genetic component of our being as the core of what makes us human (Einsiedel & Geransar, 2009, p. 355). For example, a close connection is often posited between personal genetic information (PGI) and fundamental, hitherto hidden aspects of identity. PGST provides the means to to truly know thyself (Navigenics, Press Release, 08/04/08). Genetics is responsible both for our common identity as human beings, our fundamental similarities (23andMe, 13/03/09, About Us: Core Values), and for our identities as individuals, what makes you unique, (23andMe, How it works, 13/03/09). Although the relationship between genetics and phenotype may not be represented as strongly deterministic (Resnik & Vorhaus, 2006), it is still direct, one-directional and unmediated: [o]ur phenotype is the physical or visible representation of our genes (deCODEme, About Genetics Prediction, 20/05/10); Your Genes Hold the Untold Story of Your Health (Pathway, Genes and Health Conditions, 08/06/11). Metaphors which represent DNA as an organic blueprint or book of recipes (deCODEme, About Genetics What are Genes, 20/05/10-07/06/11) are occasionally used. At the same time, an anti-essentialist tendency is often apparent. 23andMe suggests that other, non-genetic factors are equally or more important in shaping phenotypical traits, pointing out on their Core Values page, for example, that genes operate
in conjunction with diet, environment and other factors to influence aspects of our appearance, behaviour, and physiology.

Other companies also employ the equally or more important trope. For example, Navigenics notes on its Next Steps pages (07/06/11) that [i]n some cases, the environmental risks carry much more weight than the genetic risks. There appears, therefore, to be a tension between essentialist and antiessentialist representations, perhaps most marked in the case of deCODEme. However, this tension eases when companies construct links between their susceptibility risk products and action that can be taken by the customer, or by customers together with their physicians, to reduce risk. Here, anti-essentialist tropes become much more dominant, with genomic risk information represented as being both of personal utility (in motivating behaviour change) and clinical usefulness (in potentially improving diagnoses and treatment recommendations). For example, on one of its Customer Stories pages, deCODEme describes a patients test results, requested by his physician, as another tool, or as Jack repeats, another arrow in Dr. Bales quiver (Genetic test is sensible self-investment, 3/10/08-15/06/2011). The function of the tool is described here as to exert direct causal influence on behaviour. The space for action is still represented as created by ones genotype, however, which is often represented as, in the last instance, the anchor of ones identity: my genetic makeup isnt going to change (deCODEme, Anna Peterson, 20/05/10

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10 07/06/11); [y]our genetic risk can't be changed (Navigenics, Next Steps, 07/06/2011). On the other hand, if the influence of genotype is, in the last instance, what other causal influences only modify, companies insist there remains plenty of room in which to act. Indeed, the importance of environmental factors is central to claims about the empowerment provided by genomic self-knowledge. Changing lifestyle factors such as diet, smoking etc. are often represented as the key to reducing risk. Genomic fetishism As we have seen, anti-essentialist themes often emerge when companies focus on how PGST consumers act upon disclosures of genomic risk. Although these dilute genetic essentialist tropes, and mark a distance from genetic determinism, they also mark points where genomic fetishism can appear. A typical example is how imagery of maps and mapping is deployed: your genes are a road-map to better health (deCODEme.com, Front Page, 20/05/1015/06/11), a map that can help guide your future (Navigenics.com, Next Steps, 07/06/2011). Mapping metaphors in genetics and genomics have a long history and are typically complex, as Rosner and Johnson (1995, pp. 117-20) point out, having implications for knowledge and action in the shape of how they colonise both the genome and the future. The idea of genomic risk interpretation as road-mapping extrapolates from population-level risk data anchored in the past to a present future of determinate risk (Adam & Groves, 2007, p. 5). By extending the planning and acting perspective of whoever surveys the mapped territory, the map extends the reach of their power to control and civilise territory. The use of road-map imagery (implying a definitive guide for the individual making a journey into the unknown, as contrasted with earlier invocations of genomic maps in connection with the Human Genome Project, for example) represents a direct extension of the relationship posited by companies between knowledge and action. The in the last instance trope connects knowledge to a fixed unchanging reality which it uncovers. A goal of better or optimal health requires a potentially risky future to be civilised, unknown dangers to be transformed into known risks, and the tested individual to be symbolically transformed from a dangerous subject ignorant of her genotypic past into a risk-aware subject attuned to the contours of her risky future The transition between knowledge and action is generally represented (particularly by deCODEme and Navigenics) as seamless: rational and health-conscious individuals, presented with accurate maps of their potential futures, are able to translate these easily into planning and action:
[o]nce you are aware of those conditions, taking preventative measures is the next logical step (deCODEme, About Genetics Prediction, 20/05/10 08/06/11) empowering individuals with genetic information catalyzes new behaviours (Navigenics, Press Release, 23/11/10).

Sometimes, however, the transition from knowledge to action is represented as involving a disruptive vision of the future caused by the unique experience (Pathway.com, Terms of Service, 12/06/09) of finding out ones genetic risk, in which a life-changing revelation is involved. Commenting on the impact of being presented with a risk profile, one deCODEme customer is reported as saying my genetic makeup isnt going to change but, through this experience, I have changed (deCODEme, Anna

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11 Peterson, 20/05/10 07/06/11). Here, a temporal relation between the past, present and future distinct from that inscribed in the road map metaphor is constructed. In these instances, present knowledge of the future is not just depicted as predictive but also as representing a distinct category of knowledge, i.e. that of prophecy or divination. In the revelation of ones genomic past, a future present simultaneously breaks into the here and now (Adam & Groves, 2007, p. 5). The symbolic importance of such divinatory disclosures is that they convey the urgency with which individuals in the post-genomic age are summoned to take responsibility for searching out and avoiding the fixed future presents that their genome has laid up for them: If we dont know what our future problems might be how can we avoid them? Its like saying, Im just going to wait until a car runs me over (deCODEme, Prevent and Avoid Health Problems, 21/11/08-15/06/2011). Both sets of imagery road-maps and revelations exhibit genomic fetishism, at the same time as marking out a territory distinct from determinism. The pastness of genomic knowledge lies in its reference to in the last instance a fixed, inner reality. At the same time, the future is represented as fixed, in the specific sense that, by employing imagery of maps and revelations, companies represent the results of the complex processes by which PGI is interpreted as fixed points on which de-risking strategies can be based. At this point, PGST companies manifest the kind of reification of risk that, as I noted earlier, is characteristic of risk thinking as such. According to Marx, the effect of commodity fetishism is to present the commodity and its relations with other commodities as naturalised (Marx, 1990, p. 165), creating a perspective illusion which obscures the social relations through which commodities are produced as such in the first place. Kaushik Sunder Rajan suggests that the relations of scientific production suffer the same fate in genomic fetishism as the social relations of material production within commodity fetishism. On the one hand, GWAS studies tend to be funded by charities and state research agencies on a not-forprofit basis, and are then available for PGST firms to exploit commercially. On the other, instead of recognizing that genomic knowledge is the result of contingent, fragmentary, contested and constantly revised processes (Rajan, 2006, p. 145), the results of susceptibility testing tend to be represented as definitive and authoritative. For example, the risk profiles PGST companies provide are based on interpretations of GWAS studies, the significance of which are often by no means settled among geneticists. GWAS research has, historically, been carried out in particular ethnic and geographic populations. As the scientific corpus on which testing draws has new studies added to it, the meaning of particular genetic associations may change as evidence grows for some associations, and diminishes for others. In practical terms, this means that risk profiles may change, even sometimes resulting in reversal of risk classifications from high to low, or vice versa (Bunnik, et al., 2011, p. 7). Further, the divergences between risk scores provided by different companies for the same condition have been widely noted (Fleming, 2008; Ng, Murray, Levy, & Venter, 2009). Finally, the sufficiency for risk profiling of GWAS studies, which only examine a pre-selected set of sites on the genome, is placed in question by the prospect of cheapening wholegenome sequencing. Yet the language of maps and revelatory disclosures depicts the future knowledge with which the individual testee is provided as anchored to a fixed point. While maps and revelations imply distinct temporal logics, as we have seen, they share this fetishistic perspective on risk. As we saw previously, this kind of view characterizes risk thinking more widely: it tends to reify risks as real objects of scientific investigation, forming part of a stationary future. Genomic fetishism extends this

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12 perspective to encompass the genome, via the discourse of susceptibility risk. The rhetoric employed by companies often elides (Roberts & Throsby, 2008) the difference between, on the one hand, the fixity of ones genetic inheritance, and on the other, the ongoing project of determining its significance, in which shifting uncertainties are implicated. If ones genome is in the last instance the sole fixed determinant of risk, then the production and consumption of genomic knowledge tends to be represented as mapping or revealing its contours (discovering your genome), rather than the production and interpretation of a provisional and contingent quantification of uncertainty. At the same time, low-key conflicts between fetishistic and anti-fetishistic imagery also play out on company websites, just as essentialism uncomfortably alongside anti-essentialism. As we have seen, the event of discovering ones genome is generally represented in a declarative and categorical mode. While sometimes going hand in hand with denials of determinism, this may imply that the genes themselves are speaking truth through risk profiles:
Her genes suggest she wont have too much to worry about (deCODEme.com, Dorrit Mousaieff, 20/05/10 0/06/11)

Nonetheless, recognition of the contingent and partial nature of knowledge of susceptibility risks is built into companies subscription-based business models (and ways of rating reliability of information, such as 23andMes star system for research study results). At the same time, the justification for subscribing to research updates is generally framed positively not as necessitated by the scientific uncertainties surrounding current research, but required in order to access growing scientific understanding of genetic associations. Each additional piece of research tends to be framed as a new discovery to add to previous ones, rather than a contingent modification to earlier interpretations that may add to or subtract from their significance, render them ambiguous, or even reverse them.
Your deCODEme results will not reside in a single static report, but in an ever evolving information-rich and secure web account (deCODEme.com, FAQs, 12/07/09-20/05/10)

The fixity of the future addressed by PGI reports is affirmed in such representations: genomic knowledge is presented as provisional only in the sense that there are still inaccuracies or gaps which will inevitably be remedied or removed. Representations which foreground more emphatically the contingent nature of genomic research are also evident, however. These are typically linked to caveats regarding the limitations of what genomic risk profiling can tell customers, and which occur in less prominent parts of websites. These still tend to be phrased neutrally (the science may change) rather than negatively (e.g. uncertainty may grow rather than diminish).
some of the information you learn from 23andMe may change over time (23andMe.com, Considerations, 13/11/08-17/05/2011) Over time, new studies are likely to be published that may change your risk estimates. (Navigenics.com, Policies, 08/07/11)

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13
[...]future research may change our understanding of the relationship between individual SNPs and risk for disease. (Pathway.com, Terms of Service, 12/06/09)

Some exceptions can be found, relatively prominently, within 23andMes website, suggesting that change may be more ambiguous. On the relatively prominent Core Values page, it is stated that but science is constantly moving: two steps forward, one step back, and often one step sideways (23andMe.com, Core Values, 13/11/0817/05/2011). Nonetheless, despite systematically distinguishing between established and provisional research results (A. Gould, 2010), 23andMe tends to promote its database of research studies as definitive, once a study is established (23andMe.com, For Scientists, 13/11/08 17/05/11). Overall, however, though companies avoid, for the most part, deterministic language, risk profiles tend to be represented as providing a fixed reference point in the future (whether present future or future present), an island of determinacy amid indeterminacy generated by a black box of scientific apparatus and knowledge practices. Though the details of the map may change, the territory of risk it maps will not. Susceptibility risk is thus constructed as a naturalised fact which demands a strategic response, much as, in other contexts where risk thinking is applied, forecasts of profits, road congestion, or energy demand do (cf. Wynne, 1982, p. 52). This affirms a central assumption behind risk thinking, that the contingent can only temporarily elude conquest (Crawford, 2004, p. 516). Genomic Fetishism and Somatic Ethics Despite the emphasis by companies on PGI as empowering, acknowledgements of the limitations of PGSTs knowledge base also if more implicitly position the ideal consumer addressed by company publicity as a more passive subject in waiting. There is a general recognition that PGST testing is, as yet, generally of little clinical value, and that the personal utility of testing is largely unexamined (Foster, Mulvihill, & Sharp, 2009). Still, the value of PGST is represented by companies as more than a pragmatically useful tool for avoiding health risk indeed, seeking access to ones PGI is seen as a symbolic marker of responsible behaviour.
You can make sure that whoever is going to be in charge of you when youre older can be prepared, both financially and knowing what signs to look out for. You can help ease their burden. Lets be responsible adults.(deCODEme.com, Prevent and Avoid Health Problems 20/05/10-07/06/11)

This normative ideal of individual responsibility is also articulated together with the goal of maximizing or optimizing healthiness:
[...] those who initially choose to take the Navigenics Health Compass test will be those who are looking to maximize their health and wellness and focus their healthcare needs. (Lei, 2008) We help you partner with your physician for earlier detection and better treatments, and ultimately, optimum wellness. (Navigenics.com, Next Steps, 07/06/11)

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14 Simply de-risking ones lifestyle in a piecemeal fashion is not enough: ones responsibility to avoid burdening others with unexpected and unprepared-for costs is best fulfilled by taking wellness as the telos of ones actions. The value of ones genetic inheritance is therefore takes two forms, one ethical and one pragmatic. On the one hand, it is a fixed object, constitutive of who one is, that cannot be transformed, only cared for (Murray, 2007) by seeking wellness. On the other, it is a tool with hidden but exploitable instrumental value: Like a bank filled with money, your genome is full of value (Cline, 2009). I noted earlier that, for the subject of susceptibility discourses, being responsible is a condition that remains always to be achieved. The consequentialist logic of moral choice set out by companies presents the justification of choices made now as connected to metaphors of optimising ones entrepreneurial investments in the present and of using profits to offset future costs. Yet the possibility of such payoffs in the shape of the attainment and maintenance of an equilibrium state of healthiness remains contingent on the resolution of the uncertainties which surround the advance of PGSTs regime of truth, and for which the individual waits. Whether the choice to buy this test rather than that one will have been a genuinely responsible one always remains to be seen. Conclusions Despite generally avoiding strong genetic determinism in how they constructs the ideal subject of personal genomics, PGST companies, I have argued, do not avoid genomic fetishism. On websites, in press releases, and in other documents they represent the unknowns surrounding the clinical validity and utility of PGST as residual pools of uncertainty that will gradually and inevitably be cleared up. The ways companies represent the value of their services obscures differences between the genome in itself and the genome for us, that is, the genome as expressed through genomic assays and risk profiles. As a result, the fixity and stability attributed to the former also becomes associated with the contingent and revisable results of complex processes of scientific knowledge-production, resulting in a fetishism of genomic risk that mirrors broader tendencies in risk thinking. The uncertainties which are obscured by genomic fetishism, are considerable. They relate, first, to how the contribution of particular SNPs to risk is assessed; second, to hopes for the personalization of healthcare which PGST is assumed to support; and third, to the need for a full accounting of risk which goes beyond an emphasis on genetic susceptibility if personalization are to be realized. These uncertainties, taken together, problematize the attempts by PGST companies to articulate a somatic ethics around genetic susceptibility. The relative prominence given by PGST companies to the contribution of environmental risk factors to disease risk stands in sharp contrast to the almost total absence of comment regarding persistent uncertainties rooted in genomic research itself (e.g. common or rare variants as the appropriate focus for research, the effect of interactions between SNPs other than those currently studied on disease risk, and so on). As Ng and colleagues (2009) point out, such uncertainties are deprecated by companies, in favour of discussions of the plasticity of environmental risk contrasted with the fixity of genetic risk. With respect to personalization, personal genomics is represented by all companies in our sample as the key to realizing the massive social benefits of a personalized medicine future in which molecular precision in assessing the risk

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15 conferred by a particular genotype is achieved. The provision of a risk report is sometimes itself equated to personalized medicine, with deCODEmes website providing particularly emphatic examples. PGI is presented as more personal and precise a measure of risk than phenotypical information, such as cholesterol scores, blood pressure, and family history:
So when you chase [phenotype-related risk] numbers, youre forced to treat a patient as the average of a huge study population. (deCODEme.com, Prevent Heart Attack, Stroke, Diabetes, 20/05/10-07/06/11) [...]you cant get any more personal than knowing a patients genetic makeup (deCODEme.com, Prevent Heart Attack, Stroke, Diabetes, 20/05/10-07/06/11)

As we saw previously, commentators on a previous generation of susceptibility tests for high-penetrance disease genes noted that risk numbers based on population-level data were often misrepresented as exact, certain and tailored to the individual (Press et al. 2000). The ecological fallacy may apply to PGST too. The meaning of the information provided by GWAS-based susceptibility testing constitutes more information about risk for the particular individual is equally hard to establish. Occasionally, companies acknowledge this, by noting the difference between a risk profile and a comprehensive individual diagnosis of risk. A good example is provided by 23andMe, which (unusually, on its prominent FAQs page) answers the question why is a risk report not a diagnosis by pointing out that in order to make a diagnosis, your doctor considers not only your genetic information, but also your particular personal and family history and your physical condition, as well as any symptoms you are experiencing (13/11/08 17/05/11). Personalization here (in the form of making a diagnosis as opposed to a general statement of risk probabilities) is acknowledged to require more than personal genomics. What is still left out here, however which companies generally do not discuss at all is the idea that, to realize hopes regarding personalized medicine would require a full accounting of risk, including environmental, epigenetic and phenotypical factors, in order to provide a genuinely personalised assessment of health risks (SACGHS, p. 24). This will require a huge, coordinated and lengthy multisided research effort to build bridges between different disciplines (Feero W, 2008) to build and make sense of the huge and multiple datasets required. In addition, this would take the scope of somatic ethics beyond a focus on the individual and his or her personal responsibility for their genomic inheritance. The fetishism of genomic risk in PGST discourse, and the forgetting of the conditions of scientific production, reflects a wider political economy of genomic risk (Sunder Rajan 2006), in which risk as a saleable commodity requires quantitative precision, even if this turns out in the face of more complex uncertainties to be largely specious precision. It also reflects tensions within risk thinking as a mode of governance, which mean that the precision promised by risk is constantly on the point of being undermined by uncertainties that have been deprecated as part of a wider politics of uncertainty, of which risk thinking is only part. The ideal subject constructed by companies is part of this wider political economy, posited through genomic fetishism as empowered but at the same time as a passive consumer. How individuals who have taken PGS tests experience and understand their own subjectivity is an open-ended question. However, empirical quantitative and qualitative research to date suggests that susceptibility risk information does not obviously translate into an increased sense of agency and responsibility.
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16 Studies appear to have found that, at most, samples are split down the middle on whether the information has been beneficial in motivating changes in health behaviours (Bloss, Darst, Topol, & Schork, 2011, p. R135; McGowan, Fishman, & Lambrixa, 2010). In this paper, I have suggested that PGST companies attempts to articulate what a somatic ethics for personal genomics might look like reflect wider ethical and political tensions within contemporary societies arising from the relationship between their present and future. To what extent users of PGST services find these tensions relevant, and to what extent they experiment with novel practices as a way of building PGST risk profiles into a somatic ethics of their own (cf. English-Lueck, 2010) in the face of wider and deeper uncertainties are topics for additional research suggested by our conclusions. References ADAM, B. and GROVES, C., 2007. Future Matters: Action, Knowledge, Ethics. Leiden: Brill. ADAMS, V., MURPHY, M. and CLARKE, A. E. 2009. Anticipation: Technoscience, life, affect, temporality. Subjectivity, 28(1), 246-265. BEARDSLEY, T. 1996. Vital data. Scientific American, 274, 100-105. BLOSS, C. S., DARST, B. F. TOPOL, E. J. and SCHORK, N. J. 2011a. Direct-toconsumer personalized genomic testing. Human Molecular Genetics, 20(R2), R132-R141. BROWN, N. 2005. Shifting Tenses: Reconnecting Regimes of Truth and Hope. Configurations, 13(3), 331. BUNNIK, E. M., SCHERMER, M. H. N. and JANSSENS, A. C. J. W. 2011. Personal genome testing: Test characteristics to clarify the discourse on ethical, legal and societal issues. BMC Medical Ethics, 12(11), doi:10.1186/1472-6939-11121111. CLANCY, K. J., BERGER, P. D. and MAGLIOZZI, T. L. 2003. The Ecological Fallacy: Some Fundamental Research Misconceptions Corrected. Journal of Advertising Research, 43(04), 370-380. CLINE, E., 2009. 23andMe.and me: Interview with Esther Dyson. The Spittoon [online]. Available from: http://spittoon.23andme.com/2009/12/07/23andme%e2%80%a6-and-meinterview-with-esther-dyson/ [Last Updated: 7/12/09; Accessed: 24/06/11]. COLLINS, R. E., A. J. WRIGHT, and MARTEAU, T.M. (2011). Impact of communicating personalized genetic risk information on perceived control over the risk: a systematic review. Genetics in Medicine 13(4): 273-277. CRAWFORD, R. 2004. Risk Ritual and the Management of Control and Anxiety in Medical Culture. Health:, 8(4), 505-528. EINSIEDEL, E. and GERANSAR, R. 2009. Framing genetic risk: trust and credibility markers in online direct-to-consumer advertising for genetic testing. New Genetics and Society, 28(4), 339-362. ENGLISH-LUECK, J. A., 2010. Being and Well-Being: Health and the Working Bodies of Silicon Valley. Stanford University Press. ESPELAND, W. N. and STEVENS, M. L. 1998. Commensuration as a Social Process. Annual Review of Sociology, 24(1), 313-343. FEERO, W, G. A. E. C. F. S. 2008. THe genome gets personalalmost. JAMA: The Journal of the American Medical Association, 299(11), 1351-1352. FINKLER, K., 2000. Experiencing the new genetics: family and kinship on the medical frontier. University of Pennsylvania Press.

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