Bioethics and Human Rights PDF

## Bioethics and Human Rights ### A Historical Perspective **Robert Baker** - The sacred rights of Mankind are not to be rummaged for among old parchments or musty records. - They are written, as with a sunbeam, in the whole volume of human nature by the hand of Divinity itself, and can never be...

## Bioethics and Human Rights ### A Historical Perspective **Robert Baker** - The sacred rights of Mankind are not to be rummaged for among old parchments or musty records. - They are written, as with a sunbeam, in the whole volume of human nature by the hand of Divinity itself, and can never be erased or obscured. - Alexander Hamilton, 1787 - Philosophers like myself... see our task as a matter of making our own culture-the human rights culture-more self-conscious and more powerful. -Richard Rorty, 1993 Bioethics and human rights were conceived in the aftermath of the Holocaust, when moral outrage reenergized the outmoded concepts of "medical ethics" and "natural rights," renaming them "bioethics," and "human rights" to give them new purpose. Originally, principles of bioethics were a means for protecting human rights, but through a historical accident, bioethical principles came to be considered as fundamental. In this paper I reflect on the parallel development and accidental divorce of bioethics and human rights to urge their reconciliation. ### The 1948 UN Declaration: From the Rights of Man to Human Rights The immediate precursor to "human rights" are the droits de l'homme, the "natural, inalienable, and sacred rights of man" to "liberty, security, property, and resistance to oppression" declared by the French Republic in 1789. The rights, in turn, derive from the God-given inalienable rights to life, liberty, and the pursuit of happiness in the 1776 American Declaration of Independence. Yet, despite this heritage, the rights of man were moribund in the first part of the twentieth century. ### The Nuremberg Code and the Principlest Precedent in American Bioethics - The Preamble to the Universal Declaration of Human Rights reminds the world that it originates as a reaction to "barbarous acts which have outraged the conscience of mankind." - The same has been said of the Nuremberg Code; it is "impossible to analyze the origins of the Nuremberg Code apart from the historical setting of atrocities and murders committed in Nazi Germany." - Like the Declaration, the Code is a post-Holocaust document. - Why did the tribunal need to invent a code of ethics to condemn the Nazi researchers? - To quote the defense for the Nazi doctors, at that time there was "an almost complete lack of written legal norms" on human-subjects research. - There were two notable exceptions: 1931 German Health Ministry regulations and 1946 American Medical Association (AMA) research principles. - The Ministry regulations prohibited research on German patients without their informed consent. - The AMA principles prohibited research on persons without their consent-it thus anticipated the bioethical turn by using the language of principles to expand the traditional protections of medical ethics from "patients" to "persons." Read literally, however, neither the regulation nor the principle was applicable to the German researchers. Physicians and scientists working at the camps dealt with inmates, not with patients covered by the German health insurance, and, as Germans, they were not answerable to American ethics principles, legal standards, and applicable regulations. To deal with these problems, the prosecution turned to two American physicians: Colonel Leo Alexander, a psychiatrist who had treated concentration camp survivors, and Professor Andrew Ivy, former scientific director of the Naval Medical Research Institute at Bethesdaand the official observer for the AMA. Both argued that unconsented human experimentation was impermissible, appealing to Hippocratic tradition. Ivy, however, also appealed to the "laws of humanity and the ethical principles of the medical profession."14 The expression "laws of humanity" was the language of the Nuremberg indictment; "ethical principles" was the language of the AMA, which had parsed ethics as "principles" since its 1903 "Principles of Medical Ethics."15 Ivy went further than the AMA, however, by grounding his principles in human rights: "The involved Nazi physicians and scientists ignored ethical principles and rules... which are necessary to insure the human rights of the individual" (emphasis added).16 Ivy's conception of ethical principles as mechanisms for protecting human rights circumvents the defense arguments about the time and place at which specific rules were formulated. Human rights are inviolable irrespective of any principle, rule, or law stating their inviolability. Thus, even if no ethical principle or law accepted in Germany in the 1930s and 1940s was violated, "physicians and scientists whose conduct is contrary to the laws of humanity and human rights should be prosecuted as criminals."17 For, to reiterate, unlike laws and principles, human rights are inviolable regardless of whether a rule, principle, or law was formulated prohibiting a specific act of violation. The Nuremberg judges incorporated aspects of both Alexander's and Ivy's testimonies into their judgment condemning the Nazi doctors. They accepted Ivy's principlist discourse but ignored his elegant suggestion that transcultural ethics could be grounded in human rights. Instead, they fabricated a fiction or, if one prefers, a myth. They claimed that, "All agree, that certain basic principles must be observed in order to satisfy moral, ethical, and legal concepts." Consequently, they argued, because the Nazi experiments were contrary to "the principles of the law of nations as they result from the usages established among civilized peoples, from the laws of humanity, and from the dictates of public conscience,"18 the Nazi doctors were guilty of crimes against humanity. Because the Tribunal grounded its case on the myth of converging civilized opinion, the Nuremberg Code should be regarded conceptually, as well as chronologically, as an artifact of the pre-human rights era. This historical accident is significant because the research ethics decalogue promulgated at Nuremberg was appropriated by the American bioethics movement of the 1970s as a foundational document. Its universally agreed basic principles thus set a precedent for the language and justifications offered in American bioethics and rights discourse was ignored. ### The Rebirth of Human Rights and Bioethics in the 1970s It was an accident of history that human rights and the principles of bioethics were reborn in the 1970s in government documents (The Final Declaration of Helsinki, the Belmont Report) in which they were presumed to serve symbolic functions-which is to say, no real function at all. **The Final Declaration of Helsinki** was intended to legitimate *the Soviet Empire*. Yet, as political theorist Michael Ignatieff notes, the human rights movements legitimated by *the Declaration of Helsinki* would eventually bring "the Soviet system crashing down."19 For, unlike its precursor, "minority rights," "human rights" discourse served to unify. Appeals to "minority rights" tended to imply rights for *my* minority, not for *yours*; by contrast, no one's human rights came at the expense of anyone else's. By 1966, evidence of the abuse of human subjects was apparent enough to prompt the **National Institutes of Health (NIH)** to mandate a system of peer review to protect research subjects.20 In that same year an article published in *the New England Journal of Medicine* by Henry Beecher himself found that 22 research papers published in such leading journals as JAMA and *the New England Journal of Medicine* between 1948 and 1965 were morally questionable. 21 In the absence of substantive guidelines, however, peer review alone did not prevent research abuses. In 1973 **Senator Edward Kennedy** investigated a study by *the U.S. Public Health Service on untreated syphilis in African-American males*, which was conducted without their informed consent. The public was outraged, and federal response was swift. On **July 12, 1974, President Nixon** signed **the National Research Act (NRA)**, forming *the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research* to develop substantive rules for protecting the human subjects of federally funded research. In the next four years *the National Commission* published several reports recommending regulations to protect research subjects. Internationally, there was a parallel move, starting with Helsinki II (Tokyo, 1975). The most influential report issued by *the National Commission* concerned principles. In 1978, it issued *the three-volume Belmont Report*, 22 in which it asserted that three basic ethical principles should regulate research on human subjects the principles of respect for persons, beneficence, and justice. Following *the Nuremberg precedent*, *the Commissioners* justified these principles in terms of convergence: the principles were deemed binding because **"all agreed"** that they ought to be binding. 23 Convergence was a liberating concept. Tom Beauchamp and James Childress were perhaps the first to appreciate this point. In *Principles of Biomedical Ethics* (first published in 1979), 24 they construct bioethics25 in terms of four "basic" principles-autonomy, beneficence, nonmaleficence, and justice-one more than the three used in *the Belmont Report*. These principles, in turn, are justified by a presumed convergence of reflective ethical thought. By placing convergence at the level of principles, Beauchamp and Childress liberated bioethics from the ethical theories that happened to be in vogue, philosophically. By so doing, it not only unified the ethical analysis of researcher and clinician conduct, it also deprofessionalized medical ethical discourse. Thus, just as human rights discourse could become a public discourse only if freed from conceptions of divine and human nature, so too, bioethics discourse could serve as a public discourse only if freed from conceptions of the medical profession, its nature, and mission. The new discourses open the domain of diplomats and doctors to ordinary people, who have no professional pretensions whatsoever. Bioethics and human rights are thus kindred democratizing and deprofessionalizing public discourses that transform the ethics of elites into everyday ethics. ### Bioethics and Human Rights: Some Parallels The parallels between bioethics and human rights as concepts, discourses, movements, and fields are striking. - Both were conceived out of horror of the Holocaust, - both draw strength from the resolve that "never again" would any vulnerable population be treated as the Nazis had treated the Jews, - both support respect for persons, - both stake claims to universality, - both were born in governmental documents that explicitly justify transnational, transtemporal, transcultural moral judgments, - both became unfashionable in the era of Cold War realism, - both are international, and thus (perhaps not surprisingly) both refer to Helsinki declarations, - both were resurrected in the mid-1970s, - both are supported by an unusual alliance of governmental and nongovernmental organizations, - both became widely disseminated by disassociating themselves from earlier metaphysical and philosophical moorings, and - both use a public discourse to democratize the domain of professional elites, although, ironically, both are supported by professional groups who consider themselves expert in the domain of the discourses. Yet, despite these similarities and even though one of the progenitors of the Nuremberg Code, Andrew Ivy, envisioned principles as mechanisms for protecting human rights-American bioethics has been ill at ease with the idea of human rights. It is time to reconsider. Pandemics leap from continent to continent, companies peddle their cures around the world, biomedical experiments sponsored in the developed world are conducted in the developing world, and, in all corners of the globe, the new biology foments culture shock. Bioethical issues do not stop for border crossings. Thus we need global bioethics. But the principlism that has served American bioethics so well is too parochial to play on an international stage, and so to meet the challenges of global bioethics, we need to turn to the more cosmopolitan concept of human rights. Once bioethics enters the international stage, the ideal of converging principles becomes unsustainable. Different cultures embrace different principles and differ in their interpretations of common principles. If principlism is to function internationally, it must be reconceptualized to shed its parochialism. ### Reconciling Bioethics with Human Rights It is time to reconsider Ivy's proposal that we construe the principles of international bioethics as mechanisms for protecting human rights. Rights discourse is already the accepted language of international ethics. As members of the United Nations, virtually all the nations on Earth have pledged themselves to accept as "a common standard," that "all human beings are born free and equal in dignity and rights." As philosopher Richard Rorty has observed, ours is already a human-rights culture. A global bioethics that envisions principles as mechanisms for protecting human rights will thus inherit an internationally accepted ethical discourse.26 Rights discourse is the best means available for achieving the shared goal of both bioethics and human rights theory: the moral demand that never again will anyone be treated in the manner that Nazis treated Jews. An international bioethics based on respect for human rights will also be free from the feckless dispute over whose principles are preferable. Principles are preferable insofar as they effectively protect human rights. Because effectiveness is partially a function of cultural experience, different societies may properly employ different principles--respect for persons, respect for families, solidarity--insofar as they effectively protect human rights in the culture in question. The proposed reconciliation of human rights and bioethics thus recognizes cultural variation in principles and does not challenge American principlism within its home cultural sphere. Grounding international bioethics discourse in human rights will not be a panacea. Human rights discourse may be the lingua franca of the international community, but the scope and limits of human rights should properly be subject to intense debate, as should the principles and rules that we create to protect these rights. The depth of the dilemmas that we must address will not dissipate merely because we use a common mode of moral discourse to address them. The transcultural scope of human rights discourse can, however, dissipate problems of moral parochialism. Each culture has a deeply rooted predilection to treat its own conception of morality, its own moral concepts and principles, as primary. Human rights discourse was designed to be as cosmopolitan and international as the United Nations itself; it permits us to transcend our parochialism and thus to focus on the substance of the profound moral challenges that we face. ### Acknowledgments I should like to thank Joseph d'Oronzio for inviting me to compare the historical development of bioethics and human rights, thereby providing me with an excuse to engage in an exceptionally illuminating exercise. This paper draws on my earlier work on human rights, which has been enriched by discussions at the International Association of Bioethics (Tokyo), the Hastings Center, New York University, the Mount Sinai Medical Center (especially with Rosamond Rhodes and Stephen Baumrin), and by critiques by Tom Beauchamp and Ruth Macklin. ### Notes 1. Cambridge Quarterly of Healthcare Ethics (2001), 10, 241-52. Printed in the USA. Reprinted with permission. 2. A. Hamilton in Nonsense upon Stilts: Bentham, Burke and Marx on the Rights of Man, edited by Jeremy Waldron (London: Methuen, 1987), 18. 3. R. Rorty, "Human Rights, Rationality, and Sentimentality," in On Human Rights: The Oxford Amnesty Lectures, edited by S. Shute and S. Hurley (New York: Basic Books, 1993), 117. 4. French Assembly, "Declaration of the Rights of Man and the Citizen, 1789," in Nonsense upon Stilts: Bentham, Burke and Marx on the Rights of Man, edited by Jeremy Waldron (London: Methuen, 1987), 26. 5. H. Arendt, The Origins of Totalitarianism (New York: Meridian Books, 1958), 292. 6. E. Schwelb, Human Rights and the International Community: The Roots and Growth of the Universal Declaration of Human Rights, 1948-1963 (Chicago: Quadrangle Books, 1964), 24. 7. J. Morsink, The Universal Declaration of Human Rights: Origins, Drafting, and Intent (Philadelphia: University of Pennsylvania Press, 1999). 8. C. Taylor, "Conditions of an Unforced Consensus on Human Rights," in The East Asian Challenge for Human Rights, edited by J. R. Bauer and D. A. Bell (London and New York: Cambridge University Press, 1999), 126. 9. M. Grodin, "The Historical Origins of the Nuremberg Code," in The Nazi Doctors and the Nuremberg Code, edited by G. A. Annas and M. Grodin (London and New York: Oxford University Press, 1992), 135-36. 10. J. Katz, Experimentation with Human Beings (New York: Russell Sage Foundation, 1972), 300. 11. The AMA adopted this principle but only in 1946, that is, only at Ivy's insistence and only after the Nazi researchers were indicted. 12. Although this point was not raised at the trial, Gypsies, Jews, and homosexuals had been stripped of German citizenship and were considered Untermenschen, subhumans, and thus were not protected by regulations covering Menschen, humans. For the 1931 regulations in English and German, see H. M. Sass, "Reichrundschreiben 1931: Pre-Nuremberg German Regulations Concerning New Therapy and Human Experimentation," The Journal of Medicine and Philosophy 8 (1983): 104-9. 13. L. Alexander, "Ethics of Human Experimentation," Psychiatric Journal of the University of Ottawa, 1 (1976): 40-6. See also Grodin, "The Historical Origins of the Nuremberg Code." 14. M. Grodin, ed., The Nazi Doctors and the Nuremberg Code (London and New York: Oxford University Press, 1992), 134-35. 15. American Medical Association, "Principles of Medical Ethics (1903)," in The American Medical Ethics Revolution, edited by R. Baker, A. Caplan, E. Emanuel, and S. Latham (Baltimore: Johns Hopkins Press, 1999). 16. Ivy, "Report on War Crimes of a Medical Nature," 11. 17. Ibid., 13-14. 18. Katz, Experimentation with Human Beings, 305. 19. M. Ignatieff, "Human Rights: The Midlife Crisis," The New York Review of Books 46 (1999): 59. 20. W. J. Curran, "Governmental Regulation of the Use of Human Subjects in Medical Research: The Approach of Two Federal Agencies," Daedalus 92 (1969): 576-78. 21. H. Beecher, "Ethics and Clinical Research, New England Journal of Medicine 274 (1966): 1354-60; National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report (Washington, DC, 1978). 22. For a detailed critique of the convergence justification and replies, see R. Baker, "Multiculturalism, Postmodernism, and the Bankruptcy of Fundamentalism," Kennedy Institute of Ethics Journal 8 (1998): 210-31; R. Baker, "A Theory of International Bioethics," Kennedy Institute of Ethics Journal 8 (1998): 233-74; R. Baker, "Negotiating International Bioethics: A Response to Tom Beauchamp and Ruth Macklin," Kennedy Institute of Ethics Journal 8 (1998): 423-55; T. L. Beauchamp, "The Mettle of Moral Fundamentalism: A Reply to Robert Baker," Kennedy Institute of Ethics Journal 8 (1998): 423-55; R. Macklin, "A Defense of Fundamental Principles and Human Rights: A Reply to Robert Baker," Kennedy Institute of Ethics Journal 8 (1998): 403-22. 23. T. L. Beauchamp and J. F. Childress, Principles of Biomedical Ethics (London and New York: Oxford University Press, 1979, 1983, 1989, 1994). 24. Ironically, Beauchamp and Childress tend to avoid the term bioethics. The term was coined in the early 1970s perhaps by Sargent Shriver, or by André Hellegers, or by Van Rensselaer Potter. It achieved canonical status when the Library of Congress entered it as a subject heading, citing as its authority an article, "Bioethics as a Discipline," published by Daniel Callahan in the first volume of the Hastings Center Report. Callahan can thus also be credited with coining the term. See A. R. Jonsen, The Birth of Bioethics (London and New York: Oxford University Press, 1998), 26-27; and W. T. Reich, "The Word 'Bioethics': The Struggle for Its Earliest Meanings," Kennedy Institute of Ethics Journal 4 (1994): 319-36; 5 (1995): 19-34. 25. Transnational medical ethics has already done this: thus, the Preamble to the Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, adopted by Council of Europe in 1997, the term "rights" or "human rights" appears eight times--no mention is made of "principles." "Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Convention on Human Rights and Biomedicine," Kennedy Institute of Ethics Journal 7 (1996): 277-90.