American Bioethics and Human Rights: The End of All Our Exploring

Annas G.J. and Grodin M.A. , The Nazi Doctors and the Nuremberg Code: Human Rights in Human Experimentation (New York: Oxford University Press, 1992); Shuster E. , “Fifty Years Later: The Significance of the Nuremberg Code,” N. Engl. J. Med 337 (1997): 1436–40; Ambroselli C. , L'Ethique Medicale (Paris: University Presses of France, 1988): 91–116.

Descartes R. , The Philosophical Works of Descartes, trans. Haldane E.S. and Ross G.R.T. (Cambridge: Cambridge University Press, 1967): at 211.

Mann Jonathan has also suggested the human rights tree model, with the UDHR as a trunk, although without including either bioethics or health law: “The Universal Declaration can be thought of as the trunk of the human rights tree, with the UN Charter as its roots. The two major branches, the two major International Covenants on Civil and Political Rights, and on Economic, Social and Cultural Rights, emerge from and expand upon the trunk with further elaboration through many important treaties and declarations.” Mann J. , “Human Rights and AIDS: The Future of the Pandemic,” reprinted in Mann J. , eds., Health and Human Rights: A Reader (New York: Routledge, 1999): At 223.

e.g., Jonsen A.R. , The Birth of Bioethics (New York: Oxford University Press, 1993); Rothman D. , Strangers at the Bedside (New York: Basic Books, 1991). Jonsen noted that although his 1992 conference in Seattle on which his book was based had the same title, “my colleagues and I knew that disciplines are not born; they grown slowly, gradually taking a shape distinct enough to merit a name. In truth, bioethics emerged in the years after World War II…This book [The Birth of Bioethics] designates the forty years between 1947 and 1987 as the era during which bioethics emerged as a distinct discipline and discourse. In 1947, the Nuremberg Tribunal…promulgated the Nuremberg Code.” (viii-xii). See also Jonsen A.R. , “The Birth of Bioethics,” Hastings Center Report 23, no.6 (1993): Supp. 1–4.

See, e.g., Grodin M.A. Annas G.J. Glantz L.H. , “Medicine and Human Rights: A Proposal for International Action,” Hastings Center Report 23, no. 4 (1993): 8–12.

Beecher H.K. , “Ethics and Clinical Research,” N Engl. J. Med. 274 (1966): 1354–60. A more persuasive argument is that Beecher's actions were not the beginning of something new, but a “largely opportunistic and measured response” to retain professional dominance in the face of a growing “political, social and cultural climate that challenged the status quo and the power of medical science” [including Joseph Fletcher's 1954 classic book, Morals and Medicine]…Looking at it retrospectively, [“whistleblowing”] was not just a master stroke in image management, but in the calculated preservation of professional power.” Schmidt U. , Justice at Nuremberg: Leo Alexander and the Nazi Doctors' Trial (New York: Pal-grave MacMillan, 2004): 283.

As Beecher put it in 1970: “The Nuremberg Code presents a rigid act of legalistic demands…The Declaration of Helsinki, on the other hand, presents a set of guides. It is an ethical as opposed to a legalistic document, and is thus a more broadly useful instrument than the one formulated at Nuremberg.” Refshauge W. , “The Place for International Standards in Conducting Research for Humans,” Bulletin of World Health Organization 55 (1977): 133–35 (quoting Beecher). See also Advisory Committee on Human Radiation Experiments, Human Radiation Experiments: Final Report (New York, Oxford University Press, 1996): 85–92.

Caplan A.L. , “How did Medicine go so Wrong?” in Caplan A.L. , ed., When Medicine Went Mad: Bioethics and the Holocaust (Totowa, NJ: Humana Press, 1992): 53–92. An edited transcript of the Hastings Center conference, Biomedical Ethics and the Shadow of Nazism, was publishedasa supplement to the Hastings Center Report in August 1976. On the long relationship of national security and bioethics see also Moreno J. D. , “Bioethics and the National Security State” Journal of Law, Medicine & Ethics 32 (2004): 1980–208.

A rewriting of the intellectual history of American bioethics is beyond the scope of this essay, but my guess is that virtually anywhere one begins to dig in American bioethics, one will end with World War II. The best known examples are from two of the fields intellectual founders: Jay Katz and Hans Jonas. Both were born in Germany and had family members killed in the Holocaust, and the bioethics-related writings of both grew out of their reflections on the war and the concentration camps. Jay Katz, for example, published what is still the leading text on human experimentation in 1972 (Experimentation with Human Beings [New York: Russell Sage, 1972]), and the Nuremberg Doctors' Trial was central to this collection of primary sources. His star student, and assistant in this project, Alex Capron, went on to be a leader in American bioethics himself, and I don't think it's an accident (although he may) that he is currently the ethicist for one of the major “health and human rights” organizations in the world, the World Health Organization. Jay Katz himself was a member of two major U.S. bioethics panels that examined scandals: the Tuskegee Study Panel in 1972, and the President's Advisory Council of Human Radiation Experiments (1994–95). The Nuremberg Code was the centerpiece of the latter report – although attempts to distance bioethics from it continued. See supra note 7. Hans Jonas was, of course, extremely prolific. His bioethics was also much broader than just medicine, but included the entire biosphere. Nonetheless, it was grounded in the Holocaust and the dehumanization of Auschwitz, where his mother was murdered. It is no accident that his own star pupil is now the head of America's bioethics council, Leon Kass.

The most comprehensive text on international human rights, and the one I rely on heavily in this conclusion is Steiner H. and Alston P. , International Human Rights in Context: Law, Politics, Morals, 2d ed. (New York: Oxford University Press, 2000). On applying a human rights analysis to a major health concern see Cook R. J. Dickens B.M. Fathalla M.F. , Reproductive Health and Human Rights: Integrating Medicine, Ethics, and Law (Oxford: Clarendon Press, 2003).

Fox R. , “Medical Humanitarianism and Human Rights: Reflections on Doctors without Borders and Doctors of the World,” reprinted in Mann Jonathan , eds., Health and Human Rights: A Reader (New York: Routledge, 1999): 417–35. With her colleague Judith Swazey, she has accused American bioethics of being based on “Anglo-American analytic philosophical thought [and thus projecting] an impoverished and skewed expression of our society's cultural tradition.” Tom Beauchamp (co-author with James Childress of the leading theoretical text on American bioethics, Principles of Biomedical Ethics, 5th ed., (New York: Oxford University Press, 2001) recently described the Fox/Swazey thesis as “surprisingly influential,” although given the isolation of American bioethics from the rest of the world, no surprise is warranted. Beauchamp T.L. , “Does Ethical Theory Have a Future in Bioethics?” Journal of Law, Medicine & Ethics 32 (2004): 209–217. Fox and Swazey have had more uncomplimentary things to say about American bioethics. For example, “if bioethics is…more than medical – if it is an indicator of the general state of American ideas, values, and beliefs…then there is every reason to be worried about who we are, what we have become, what we know, and where we are going in a greatly changed and changing society and world.” Fox R.C. and Swazey J. P. , “Medical Morality is not Bioethics: Medical Ethics in China and the United States,” Perspectives in Biology and Medicine 27 (1984): 336–60. And on the narrow focus of American bioethics, “One of the most urgent value questions…[unexplored in bioethics] is whether as poverty, homelessness, and lack of access to health care increase in our affluent country, it is justifiable for American society to be devoting so much of its intellectual energy and human and financial resources to the replacement of human organs.” Fox R.C. and Swazey J.P. , “Leaving the Field,” Hastings Center Report 22, no. 5 (1992): 9–15.

My colleague Michael Grodin and I followed up our conference on the 50th anniversary of the Nuremberg Code at the Holocaust Memorial Museum by founding our own physician NGO – but combining it with lawyers as well: Global Lawyers and Physicians. See <www.glphr.org> for details.

International Bioethics Committee, Report of the IBC on the Possibility of Elaborating a Universal Instrument on Bioethics, UNESCO, Paris, June 13, 2003: at 1. My own view on the question of whether to draft a universal bioethics declaration is that the Universal Declaration of Human Rights already serves this purpose, and that we cannot do better. It is more constructive to put international efforts into instruments aimed at specific bioethics problems areas, such as genetics. I agree, for example, with the spirit of the statement of former IBC chair, Ryuichi Ida of Japan, who noted of UNESCO's Universal Declaration on the Human Genome and Human Rights that it “has its place in the series of international instruments for the protection of human rights in the same way as the 1948 Universal Declaration of Human Rights, whose force is today universally recognized. The UNESCO declaration represents an extension of human rights protection to the field of biological sciences.” Edmund Pellegrino has also strongly endorsed the centrality of the UDHR to medical ethics in the context of revelations about how physicians were used to torture under the Iraq dictatorship:

National and international medical associations must examine more closely the implications of becoming instruments of anything other than the healing purposes for which the profession is ordained…This issue will be as critical for democratic as for despotic regimes, and it must become a global issue if the United Nations' Universal Declaration of Human Rights is to maintain significance. With such powerful tools [advances in biotechnology that could be used for torture] in hand, will the medical profession remain a moral enterprise even in the face of threatening emergencies?.

Pellegrino E.D. , “Medical Ethics Suborned by Tyranny and War,” JAMA 291 (2004): 1505–6. See also, British Medical Association, The Medical Profession and Human Rights: Handbook for a Changing Agenda (London: Zed Books, 2001), 14–40, and Smith G.P. II , Human Rights and Biomedicine (The Hague: Kluwer Law International, 2000), 8–17.

For an excellent account of the origins of the UDHR see Glendon M.A. , A World Made New: Eleanor Roosevelt and the Universal Declaration of Human Rights (New York: Random House, 2001).

President's Bioethics Council, Beyond Therapy: Biotechnology and the Pursuit of Happiness (Washington DC: President's Bioethics Council, 2004); See also Pollack R. , The Missing Moment (New York: Houghton Mifflin Co., 1999): at 155–60.

See, e.g., Koh H.H. , Introduction of U.S. Department of State, 1999 Country Reports on Human Rights Practices (Washington, D.C.: US Department of State, 2000): (“in the new millennium, there are at least three universal ‘languages’: money, the Internet, and democracy and human rights”) See also Knowles L.P. , “The Lingua Franca of Human Rights and the Rise of a Global Bioethic,” Cambridge Quarterly of Healthcare Ethics 10 (2001): 253–63; and Thomasma D.C. , “Proposing a New Agenda: Bioethics and International Human Rights,” Cambridge Quarterly of Healthcare Ethics 10 (2001): 299–310; Andorno R. , “Biomedicine and International Human Rights Law: In Search of a Global Consensus,” Bulletin of World Health Organization 80, no. 12 (2002): 959–63; and Annas G.J. & Elias S. , “Politics, Morals and Embryos,” Nature 431 (2004): 19–20. An international human rights approach is also consistent with Kant's views on enlightenment in the context of the entire human species, all of whose members “have an interest in the preservation of the whole” giving rise to the hope that “after many revolutions of reform, nature's supreme objective – a universal cosmopolitan state, the womb in which all of the human species' original capacities will be developed – will at last come to be realized.” (emphasis in original) Kant I. , Perpetual Peace and Other Essays, trans. Ted Humphrey (Indianapolis: Hackett Publishing Co., 1983): At 38 (originally published in 1784). Kant's philosophy supports the concept of universal human rights, and of giving all human beings the status of “world citizens.” Borradori G. , Philosophy in a Time of Terror: Dialogues with Jurgen Habermas and Jacques Derrida (Chicago: University of Chicago Press, 2003): At 55.

The father of American pragmatism, philosopher John Dewey (the favorite philosopher of the first chair of a national bioethics commission in the U.S., physician Kenneth Ryan, among others) espoused a frontier pragmatism that is also perfectly at home with the concept of equal humans freely moving toward a better world by virtue of their intelligence and experience. “It is [American pragmatism's] faith in the power of free intelligence to work its way, item by item and day by day, to that union…which the United Nations purports and the Universal Declaration of Human Rights affirms.” Kallen H.M. , “John Dewey and the Spirit of Pragmatism,” in Hook S. , ed., John Dewey: Philosopher of Science and Freedom: A Symposium (New York: Dial Press, 1950): At 45.

Rushdie S. , Step Across This Line: Collected Nonfiction 1992–2002 (New York: Random House, 2002): at 381.

Saramago J. , “From Justice to Democracy by Way of the Bells,” closing speech of the World Social Forum, Porto Alegre, Brazil, Jan. 22, 2002, at <www.terraincognita.50megs.com/saramagoalt.html> (last visited September 21, 2004). See also Farmer P. and Campos N.G. , “New Malaise: Bioethics and Human Rights in the Global Era,” Journal of Law, Medicine, & Ethics 32 (2004): 243–51, and Farmer P. , Pathologies of Power: Health, Human Rights, and the New War on the Poor (Berkeley: U. of California Press, 2003) 213–46.