Perspectives

Bioethics on the Couch

JAN HELGE SOLBAKK

Introduction In December 2010 I had the pleasure of visiting the Sigmund Freud Museum in Bergasse 19 in Vienna. Relaxing on a modern reproduction of Freuds famous couch, I sent a message to my companion telling her where, in that particular moment, I was horizontally situated. A couple of minutes into my psychoanalytic meditation a message came back: Write a paper on bioethics and Sigmund Freud! As I sat later in a brown cafe with strudel and chocolate, the text message from my companion in Latin America had started to work in my mind. I began considering ways to make creative sense of it. What kind of relation could there be between bioethics and Freuds project? My rst thought brought me back to his couch in Bergasse 19. Perhaps the Freudian couch was the link! Bioethics and analysis? Bioethics and liberation? Bioethics and therapy? There was the title for my Freudian paper: Bioethics on the Couch! BioethicsA Pioneer of Liberation For the past few months, this title had been oating around in my mind as I looked for a way to make bioethical sense of it. My working hypothesis was this: Freuds project represented a project of individual liberation and a search for an autonomous self-identity; a project whose fertility is still active in our
Cambridge Quarterly of Healthcare Ethics (2013), Page 1 of 9. Cambridge University Press 2013. doi:10.1017/S0963180113000133

culture. Whether we like it or not, whether we consider Freud a fake or a foe, it is a fact that our concept of what is entailed in being a selfto be oneself and, morally speaking, to become an autonomous selfcannot be formulated in words that do not in one way or the other bear the ngerprints of Freud. If academic bioethics has a father, or at least father gure, it must be medicine. If we are to believe Stephen Toulmin, medicine actually saved the life of (bio)ethics!1 This statement has been hailed for the last 30 years as one of the truest things ever said about contemporary bioethics. From my former teacher in medical ethics and science ethics, professor emeritus Knut Erik Trany, I learned to appreciate the dictum, You should not only say, This is true; you should also ask, what else is true? This question brings me back not only to Toulmins article but also to the couch in Bergasse 19. From the point of view of academic work possibilities and income, Toulmin was evidently right. The medical research scandals revealed in the 1970s and the early 1980s made it evident to everybodywith the possible exception of the medical communities that the boundary between correct and incorrect medical behavior could no longer be left to be determined by the ethical conscience of individual researchers and medical practitioners.2 For this reason, and because of the emergence of kidney and heart transplantations, ethics

Perspectives competency started to be demanded in medical research and practice, which in turn opened up the medical eld for ethicists searching for an academic living. Viewed from the horizontal vantage point of the couch in Bergasse 19, the following title would be equally true: How (Bio)ethics Saved the Decency of Medicine. In its rst fteen years, academic bioethics may very well be said to have pursued the same goal as the cigar-smoking man behind that couch: liberation of the self. Without the noble activities of the pioneers of academic bioethics in the 1970s and the 1980s, patients rights to self-determination would probably continue to have been neglected by physicians and other healthcare professionals. For this reason, I believe, the alternative title is as true as the one chosen by Toulmin. Instrumentalizing Bioethics What Toulmin, however, could not have anticipated at the time he wrote his paper was the long-term side effects of becoming an integral part of the medicoscientic establishment. By embracing medicine in the way (bio)ethics did, its project of liberation slowly but inevitably was transformed into a project of intellectual and moral self-deception. Mainstream bioethics can no longer be said to be acting as a liberator; instead it has become a handmaiden within the medicoindustrial complex. Whereas academic bioethics in its infancy lent its ear to the silenced voices in our societies, todays bioethics is using its intellectual and moral skills to serve the interests of the most powerful voices in our societies. As Alan Petersen, in a recent book on bioethics and politics, states,3
bioethics concepts and principles, . . . have served as a tool of governance in helping to engender consent and legitimacy for the development of technologies that involve many uncertainties, including the nature and timing of specic applications, the benets and biophysical risks and other dangers (e.g. new pernicious forms of surveillance, the reinforcement of inequalities) and the social responses.

Examples from national and international clinical research can be used to substantiate these allegations. Since the mid 1990s, the world community of bioethicists, clinical researchers, and science policymakers has been aware of the so-called 10-90 gap in medical and health-related research.4 This term was introduced to depict the monstrous inequity in the world with respect to whose diseases are favored in ongoing or planned research programs. In concrete terms this means that at least 90 percent of the economic resources spent annually on medical and healthrelated research target the health needs of the richest 10 percent of the worlds population, which implies that the needs of 90 percent of the worlds population have to be met from the remaining 10 percent of research funding. Unfortunately, gures from recent empirical studies give reason to believe that this gap has not diminished, although during the last 15 years the number of people from poor and low-income countries enrolled in clinical trials has substantially increased.5 On the contrary, evidence from these studies suggests that during this period the relative availability of new drugs to populations in poor and low-income countries has not increased, while the gap between wealthy nations and poor and low-income countries with regard to who benets from the advances of clinical research and development continues to widen.6 This situation, I believe, makes it fair to claim not only that international research today is carried out in a global background climate of gross injustice but that, by the concerted

Perspectives action of powerful stakeholders in the afuent parts of the world, international research in itself actively contributes to maintaining this injustice instead of reducing it.7,8 So, what has occupied the community of bioethics in this period? Why didnt theywhy didnt all of usspeak out against this situation?9 Why didnt the community of bioethicists have a clearer voice in international clinical research and in the ght for safeguarding the medical needs of the poorest of the poor? Such an engagementspeaking truth to powercould have represented a noble continuation and further development of the project of liberation undertaken by the pioneers of bioethics. It is not the case that bioethicists have not involved themselves in international clinical research. On the contrary, some of the most prominent U.S.-based representatives of the bioethics community have been heavily involved. The tragedy is, however, that this involvement has had little if any impact on the 10-90 gap or on the development of clearer international guidelines in clinical research ethics. What has taken place instead is that some of the most prominent of these representatives have been actively involved in weakening the restrictions embedded in international ethics guidelines, making it possible for researchers and research institutions from the afuent parts of the world to conduct research in poor and low-income countries in ways that would not be permitted in their own countries. This has been achieved through the facilitation of the use of placebo when studies are conducted in impoverished communities, through diluting the requirements of care in such situations and through weakening the sponsors responsibility towards subjects once the study has been undertaken.10,11,12 To further substantiate the allegation that mainstream bioethics is eager to serve the interests of the most powerful voices in our societies, consider one of the founding fathers of genomic research, James Watson. He should not be remembered only for his coproduction with Francis Crick of the model structure of the DNA molecule, for his pioneering work in mapping the human genome, or for being the rst individual ever to undergo whole-genome sequencing. Watson deserves also to be remembered for being the main architect of the ELSI programs for human and social science research. He suggested that 25 percent of the funding allocated to the Human Genome Project should be set apart to address the ethical, legal, and social implications of this project. Thus was born the ELSI way of doing normative research on big science projects, i.e., the idea that instead of providing independent funding for bioethics research, such funding should be made an integral part of big medicine and big bio-sciences and technology projects. During the last 20 years this idea has become the paradigmatic model of funding bioethics research. This has provided bioethics with a lot of new funding possibilities and has given many scholars in the eld the sense of really having an impact on what is going on in bioscience and technology, medicine included. Making bioethics research an integral part of the medicoindustrial complex and of big science and technology, however, has come at a cost that also needs to be reckoned. For one thing, by focusing its main attention on pursuing the implications of the research questions put on the plate by medicine, bioscience, and technology, bioethics runs the risk of losing its professional autonomy. As observed by S. Sherwin,13
much of the work of bioethicists involves responding and reacting to problems or positions that others pose through personal, institutional or

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media requests. The difculty with this pattern, of course, is that when we take up challenges initiated by others, we use time and energy that might be used to pursue other important ethical questions. The opportunity costs associated with allowing our schedules to be lled by questions set by others are signicant as we can see when we consider the stakes of the global problems that we are neglecting.

pertaining to its own foundation and tre. Or, to formulate this probraison de lem in a Freudian way, bioethics is no longer digging into the depths of its own identity. In fact, I doubt that it is still conscious of any need for returning to its true self. For these reasons I believe mainstream (bio)ethics is in urgent need of therapy. Liberating Bioethics This auto-diagnosis of bioethics brings to the fore three questions: What kind of therapy is bioethics in need of? How can bioethics once again become a project of liberation? And nally, what kind of liberation should bioethics take on as its core responsibility? As for the rst question, What kind of therapy is bioethics in need of? the answer is simple: liberation. Bioethics needs to liberate itself from the medicoindustrial complex and from bioscience and technology, both intellectually and nancially. This does not mean that we should stop responding and reacting to questions and problems posed by such stakeholders. However, we should take care not to limit our intellectual and normative project to pursuing such questions. Furthermore, we should avoid being trapped within the framework in which the original questions and problems are posed. Rather than merely answering questions posed by others, we need to try to change the agenda by formulating questions neglected by these stakeholders. Thus, for a genuine liberatory project, it may not be sufcient, for instance, just to declare ones conict of interest when doing work funded by powerful stakeholders. Perhaps one should, in addition, and in a transparent way, reveal the economic magnitude of the support being provided, so the critical reader, the public, and the policymakers will be able to assess to what extent the normative answers and advice being

So because mainstream bioethics dedicates most of its time to tracing ELSA/ ELSI funding and investigating the implications of questions formulated by the most powerful stakeholders in the eld, its scope of intellectual action has been dramatically reduced. Mainstream bioethics is no longer speaking truth to power; its voice is barely audible as a critical voice. Instead it has become the ancillathe handmaidenof the medicoindustrial complex and of bioscience and technology. An editorial in the prestigious journal Nature some years ago described it this way:14
The professional eld of bioethics has a great deal to say about many fascinating things, but people in this profession rarely say no, political scientist Langdon Winner of Rensselaer Polytechnic Institute in New York state told the House science committee in April 2003. Indeed, there is a tendency for career-conscious social scientists and humanists to become a little too cosy with researchers in science and engineering, telling them exactly what they want to hear.

Furthermore, because mainstream bioethics agrees to work under such funding and research conditions, it neglects the obligation to pursue its own originative intellectual and normative goals. Bioethics seems to no longer acknowledge the importance of undertaking basic research

Perspectives provided might be inuenced by conicts of interests. Second, the community of bioethics should start ghting for independent funding of bioethics research, so as to reduce the enormous dominance of the ELSI and ELSA models of funding. Bioethics is one of the few academic disciplines today without any basic research program of itself. Last, but not least, the community of bioethicists should on its own start the process of identifying what are the most burning research questions in bioethics today and should give intellectual priority to pursuing these questions. For this to become a tangible reality, bioethics needs to start digging again into the depths of its own self and values so as to be able to establish its own eld of basic research. It can no longer rely on what stakeholders from the medico- and technoindustrial complex or from business and government dene as the most burning issues. As Petersen suggests,15
Given the rapid pace of technological development, theres an urgent need to develop new critical perspectives on the biosciences and biotechnologies. Priority should be given to questions of global justice and human rights. It should be given to redressing the democratic decit that excludes the majority of citizens from decisions shaping the direction of science and technology. The key question shouldnt be how we manage the dilemmas posed by biotechnologies but rather what kind of future do people want and to what extent and how may technologies be used to help its realisation.

Bioethics as a Liberator Petersons suggestions, however, need further elaboration. What might it entail in terms of concrete research programs to give priority in bioethics to develop-

ing new critical perspectives on the biosciences and biotechnologies or to prioritize questions of global justice and human rights? Here are some tentative suggestions. First, line drawing in relation to new emerging technologies is, I believe, not what should be considered the primary intellectual task of bioethics.16 Such line drawing limits the critical scope of bioethics to providing normative arguments about where, within a new eld of technology, the line of demarcation and thereby the boundaries for its expansion and application should be drawn. What is urgently needed is a critical assessment of the justication for developing and implementing a particular new technology, and, in addition, an examination of who wins and who loses from [the implementation of] new technologies, and who ultimately owns innovations.17 By taking on such responsibilities, bioethics may come to play a crucial role in enlarging the space of normative reection pertaining to new and emerging technologieswhich in its turn may, as observed by Peterson, lead to a genuine democratization of science and technology development. In addition, as observed by Scully, by deemphasizing the importance of our own role as bioethicists in the drawing of lines, we are freed to explore the surrounding terrain, and to accompany groups to which we do not ourselves belong in their explorations.18 This, she continues, would be the start of developing a global bioethics that is not simply feminist, but for all the marginalised.19 My second tentative suggestion relates to questions of global justice and human rights. What does it entail in terms of concrete research programs to give priority in bioethics to such questions? In my view, bioethics needs to reassess its own conceptual and normative foundations, so as to make it possible for it to become a global bioethicsa

Perspectives bioethics that in its normative scope is not conned to the moral imagination of Anglo-American mindsets and Western life and worldviews but embraces respect for cultural diversity as a core value. Saying this does not imply surrendering to moral relativism, of course. As stated in Article 12 of the Universal Declaration on Bioethics and Human Rights,20 respect for cultural diversity has a limit. In the moment such a respect infringe[s] upon human dignity, human rights and fundamental freedoms or is at odds with the principles set out in that declaration, respect for cultural diversity and pluralism can no longer be justied. Transforming the vision of the Universal Declaration on Bioethics and Human Rights into a theoretically sustainable framework for a global bioethics requires a lot of intellectual groundwork that bioethicists should take on in order to counter the moral imperialism of Anglo-American life and worldviews. According to Peterson,21
imperialism may seem too strong a word to describe the international diffusion and growing application of bioethics concepts, principles and related practices. However, if one conceives of imperialism as a system in which a country rules other countries, sometimes having used force to get power over them (Cambridge Advanced Learners Dictionary, 2010), then this description may not seem too farfetched. Although direct force may not be used, the assumption that a predominantly US view of the world reected in bioethics should provide the basis for deliberating on fundamental issues of life has come to operate as a form of hegemony or cultural dominion.

How should we then proceed to counter the moral hegemony of Anglo-American voices in contemporary bioethics? I believe attention should be directed at

those areas of bioethics sailing under the ag of international or global bioethics. Two prominent examples here are international research ethics, as reected in the latest revisions of the Declaration of Helsinki, and the existing regime of intellectual property rights pertaining to medical innovations and their tradable productsthe so-called TRIPS regime. I dont think it is controversial that these two normative regimes are dominated by insights and interpretations provided by Anglo-American bioethicists and by the language of power, and I dont think it is controversial to say that these two regimes have given rise to a normative language situation in international clinical research that excludes large numbers of the poorest communities and peoples in the world from the possibility of accessing the fruits of medical innovations. These two normative regimes lend ethical legitimacy to the research interests of powerful public and private stakeholders in the afuent parts of the world while research participants and populations in poor and low-income countries are exposed to alterable forms of vulnerabilitythat is, vulnerabilities that could have been prevented or avoided through afrmative and context-sensitive forms of social and remedial actions.22,23 In a previous paper I made use of the metaphor of language to describe this situation: As is the case with the development of the TRIPS regime, the result of the last revisions of the Declaration of Helsinki is therefore not a language of unication but a language that paves the way for new forms of exploitation of impoverished peoples and communities and notably in the name of international research.24 What needs to be done to change this situation and turn the normative frameworks governing international clinical research and medical innovations

Perspectives into languages that unite, rather than divide, inhabitants of the global village? First, we must develop conceptions of benet sharing and exploitation that offer alternatives to those dominating the eld todaythat is, alternatives to the fairbenet approach of Emanuel and his coworkers, and an alternative to the immensely inuential notion of mutually advantageous exploitation that lurks behind that interpretation of benet sharing.25 To my knowledge, with the possible exception of the human development approach to international research proposed by Alex John London,26 there are no alternative conceptions of benet sharing and exploitation with a sensitivity to existing forms of background injustice that can match those of Emanuel and colleagues in theoretical rigor. And it ve to believe that sustainable alteris na native interpretations will become a fulledged reality before we who are critical of the current situation join intellectual forces and take on the intellectual work necessary to make this happen. Joining Forces While Dividing Labor This brings me to my last point: the importance of joining forces to be able to win the battle. As Thomas Pogge observed in relation to the implementation of the TRIPS regime,27
the unjust rules we are seeking to reform exist because others have managed to coordinate in their support. The agribusiness, software, entertainment, and pharmaceutical industries have overcome their differences to throw their political clout behind a joint (TRIPS/TRIPSplus) strategy that togetherthey got their governments to impose on the world. Those seeking to protect the poor have undeniably made great and often successful efforts of many kinds. But we have not managed to coordinate on a joint political strategy, and our dispersed efforts are therefore greatly hampered by the powerful and continuous impoverishing impact of unjust institutional arrangements.

To join forces, however, we need to share a common vision of how a global bioethics should look. The third and nal question about liberation set out in this article was the question about what kind of liberation bioethics should take on as its core responsibility. In trying to answer this question, I have made use of the nal section of the Appendix in Enrique Dussels book Philosophy of Liberation28; this section is entitled, Towards an International Division of Philosophical Labor. The text is his, with the exception of the word bioethics, which I have replaced with the word philosophy wherever it occurs. The vision he here proposes for the development of a philosophy of liberation and for a division of philosophical labor with respect to this endeavor represents for me what global bioethics should strive to become to fulll its earlier promise as a liberator:
[Bioethics] of liberation, as [an ethics] of the oppressed and for the oppressed, is not a task only for thinkers of the countries of the Third World. [Bioethics] of liberation can be exercised in all places and situations where there is oppression of person by person, class by class, racial minority by racial majority. Depending on the space where the discourse arises, diverse topics will be relevant. The themes can be different, but not the type of discourse, or its method, or its essential categories. . . . In conclusion, an international division of the [bioethical] labor, assigning to diverse groups and countries distinct tasks, would permit us to begin a fruitful dialogue where uniformity of themes would not be demanded, nor would certain thematic objects be

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spurned because they are not relevant to one or another group. Respect for the others situation begins with respect for the others [bioethical] discourse.29
cision. Guidelines to design ethical norms in biomedical research in Latin America. In: Keyeux G., Penchaszadeh V., Saada A., eds. n en seres Humanos. Bogota : UNESCOInvestigacio Redbioetica UNESCO- UNIBIBLOS; 2006: 191232; available at http://www.unesco.org. uy/shs/es/areas-de-trabajo/ciencias-sociales/ bioetica/documentos-publicaciones-en-bioetica. html (last accessed 7 March 2013); Garrafa V., Lorenzo C. Moral imperialism and multicentric clinical trials in peripheral countries. ude Pu blica 2008;24(10):221926; Cadernos de Sa and London A.L., Zollman K.J.S. Research at the auction block: Problems for the fair benets approach to international research. Hastings Center Report 2010;40(4):345. Garrafa V., Solbakk J.H., Vidal S.M., Lorenzo C. Between the needy and the greedy: The quest for a just and fair ethics of clinical research. Journal of Medical Ethics 2010;36: 5004. See note 8, Solbakk 2011. See note 2, Solbakk, Vidal Forthcoming. Sherwin S. Whither bioethics? How feminism can help reorient bioethics. International Journal of Feminist Approaches to Bioethics 2008;1(1):127, at 19. Bioethics at the bench. Nature 2006;440: 108990, at 1890. Petersen A. Whose prot? Why bioethics needs a global perspective. The Conversation 2011 Aug 22; available at http://theconversation. edu.au/whose-prot-why-bioethics-needs-aglobal-perspective-1485 (last accessed 7 March 2013). For a fascinating discussion of the metaphor of line drawing in bioethics, see Scully JL. Drawing a line: Situating moral boundaries in genetic medicine. Bioethics 2001;15(3): 189204. See note 3, Petersen 2011. See note 16, Scully 2001, at 204. See note 16, Scully 2001, at 204. Article 12, Respect for Cultural Diversity and Pluralism, reads, The importance of cultural diversity and pluralism should be given due regard. However, such considerations are not to be invoked to infringe upon human dignity, human rights and fundamental freedoms, nor upon the principles set out in this Declaration, nor to limit their scope. United Nations Educational, Scientic and Cultural Organization (UNESCO), Universal Declaration on Bioethics and Human Rights 2005. Available at: http://portal.unesco.org/shs/en/ev.phpURL_ID1883&URL_DODO_TOPIC&URL_ SECTION201.html See note 3, Petersen 2011, at 67.

Notes
1. Toulmin S. How medicine saved the life of ethics. Perspectives in Biology and Medicine 1982 Summer;25(4):73650. 2. Solbakk JH, Vidal SM. Research ethics, clinical. In: Chadwick R, ed. Encyclopedia of Applied Ethics. Second Edition, volume 3. San Diego: Academic Press; 2012. pp. 775785. 3. Petersen A. The Politics of Bioethics. New York: Routledge; 2011, at 2. 4. Ad Hoc Committee on Health Research Relating to Future Intervention Options. Investing in Health Research and Development. Geneva: World Health Organization; 1996. 5. Matsoso P, Auton M, Banoo S, Fomundam H., Leng H., Noazin S. How Does the Regulatory Framework Affect Incentives for Research and Development. Study Commissioned for the Commission on Intellectual Property Rights, Innovation and Public Health (CIPIH): World Health Organization; 2005; available at http:// www.who.int/intellectualproperty/studies/ Study5.pdf (last accessed 7 March 2013). 6. See note 2, Solbakk, Vidal 2012. 7. Ballantyne A. How to do research fairly in an unjust world. American Journal of Bioethics 2010;10:2635. 8. Solbakk J.H. In the ruins of Babel: Pitfalls on the way towards a universal language for research ethics and benet sharing. Cambridge Quarterly of Healthcare Ethics 2011;20:34155. 9. Notable examples of bioethicists who have engaged themselves heavily in this endeavor klenk U., Ashcroft R.E. Affordable include Schu access to essential medication in developing countries: Conicts between ethical and economic imperatives. Journal of Medicine and Philosophy 2002;27(2):17995; Garrafa V., Porto tica, poder e injustic tica de D. Bioe xa: por uma e intervenc xao. In: Garrafa V., Pessini L., eds. rio Poder e Injustic xa. CITY: Centro Universita o Camilo, Edic es Loyola and Sociedade Sa xo tica; 2003:3544; Berlinguer Brasileira de bioe G. Bioethics, power and injustice. In: Garrafa V., Pessini L., eds. Poder e Injustic xa. Brasilia: rio Sa o Camilo, Edic es Centro Universita xo tica; Loyola and Sociedade Brasileira de bioe 2003:4558; London A.J. Justice and the human development approach to international research. Hastings Center Report 2005;35(1):2437; Vidal S.M. Ethics or market, an urgent de-

10.

11. 12. 13.

14. 15.

16.

17. 18. 19. 20.

21.

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22. Kottow M.H. Vulnerability: What kind of principle is it? Medicine, Health Care and Philosophy 2004;7:2817. 23. Solbakk J.H. Vulnerability: A futile or utile principle in health care ethics? In: Chadwick R., ten Have H., Meslin E., eds. The Sage Handbook of Health Care Ethics: Core and Emerging Issues. Los Angeles: Sage; 2011:22838. 24. See note 8, Solbakk 2011, at 345. 25. This notion, on which the fair benet approach is based, originates from Alan Wertheimer, who makes a distinction between harmful exploitation and mutually advantageous exploitation: By mutually advantageous exploitation, I refer to those cases in which both parties (the alleged exploiter and the alleged exploitee) reasonably expect to gain from the transaction as contrasted with the pretransaction status quo. . . . I shall generally presume that mutually advantageous transactions are also consensual. Wertheimer A. Exploitation on clinical research. In: Hawkins S., Emanuel E.J., eds. Exploitation and Developing Countries: The Ethics of Clinical Research. Princeton, NJ: Princeton University Press; 2008:63104, at 6768. For this approach, see note 9, London 2005, and London, Zollman 2010. Pogge T. Intellectual property rights and access to essential medicines. Policy Innovations 2007; available at http://www. policyinnovations.org/ideas/policy_library/ data/FP4 (last accessed 17 Nov 2010). Dussel E. Philosophy of Liberation. New York: Orbis Books; 1985. See note 28, Dussel 1985, pp. 195196 (emphasis mine).

26. 27.

28. 29.