The President's Council on Bioethics
Washington, D.C.
March 2008
F. Daniel Davis
Several aims converge in this volume of essays on the significance of human dignity for bioethics, commissioned and published by the President's Council on Bioethics.i One aim is to take up the challenge implicitly issued by American medical ethicist Ruth Macklin, who bluntly asserted four years ago that "dignity is a useless concept in medical ethics and can be eliminated without any loss of content."1 In her critique of human dignity as a bioethical concept, Macklin singled out the work of the President's Council on Bioethics, claiming that the concept functions as "a mere slogan" in such Council reports as Human Cloning and Human Dignity.2
Macklin goes on to compare the Council's allegedly indistinct use of dignity with the more precise meaning that the concept is given in Genetics and Human Behavior: the Ethical Context, a report published in 2002 by the Nuffield Council on Bioethics in the United Kingdom.3 In that report, she notes, dignity refers to the idea that "one is a person whose actions, thoughts and concerns are worthy of intrinsic respect because they have been chosen, organized and guided in a way that makes sense from a distinctly individual point of view."4 Macklin's favorable comparison of this sense of dignity with the Council's "hopelessly vague" usage of the concept is but a Trojan horse for the central contention of her critique: namely, that dignity is a poor, blurred substitute for what she describes as the principle of medical ethics, respect for persons -or, as she later says, respect for autonomy. Even in the Nuffield report, she argues, the truth of the matter emerges: dignity adds nothing to, and in fact casts a confusing haze over, the ideas clearly conveyed by the principle of respect for autonomy.5
Macklin's critique of human dignity is, to say the least, open to question; and many of the respondents who were moved to submit rejoinders to her article did raise pointed questions:6 In what sense is respect for persons the principle of medical ethics? Does respect for persons mean the same as respect for autonomy? Does either principle fully exhaust the meaning of human dignity? Is dignity really reducible to autonomy? In what follows I will merely touch on possible responses to these questions, for what intrigues me here is the provocation implicit in Macklin's critique: her comparison of human dignity and respect for persons (or autonomy) invites historical analysis and reflection on the role that concepts of this sort have played in the work of national forums in public bioethics.
Respect for persons is one of three principles enunciated in the 1979 Belmont Report, the final report issued by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Researchii, the first major national forum in public bioethics in the United States. A quarter of a century later, human dignity has been a pivotal concept in some (albeit not all) of the reports of the President's Council on Bioethics, the country's current national forum in public bioethics. How does the principle of respect for persons (as well as the other two principles, beneficence and justice) function in the deliberations and reports of the National Commission? What is the meaning of the principle, what are its origins, and what has been its fate since 1979? Likewise, how does the present Council appeal to and ground its arguments in the concept of human dignity, and what does the Council mean by human dignity, which, like respect for persons, has a history that begins long before the establishment of the President's Council? What, if anything, comes to light when the differing historical contexts in which the two national forums were created are compared? To address these questions, I turn first to the context in which the National Commission was conceived and established.
On July 12, 1974, then President Richard M. Nixon signed into law Public Law 93-348, the National Research Act, which created the National Commission and charged its members with several tasks. One task was to identify the ethical principles that should govern the conduct of biomedical and behavioral research with human subjects. Another was to develop guidelines to ensure that specific investigations would be designed and conducted in accordance with these principles. The events that led to Congressional passage of the National Research Act of 1974 are well known but merit explicit remembrance here. Two years before, in the midst of the civil rights movement, the now-notorious Tuskegee Syphilis Study was brought to light in a series of newspaper investigations. Funded and conducted by the U.S. Public Health Service, the Study began in 1932 in Macon County, Alabama, and enrolled 399 poor African-American men suffering from syphilis. While its purpose was to track the natural history of the disease, researchers from the Public Health Service told the participants that they were subjects in an investigation of "bad blood," an umbrella term encompassing several conditions including syphilis, anemia, and fatigue.7 In 1947, fifteen years into the study, penicillin was established as an effective cure for syphilis, but the Tuskegee researchers withheld the antibiotic from the subjects, whose participation was enticed and sustained with offers of free meals, physical examinations, and burial insurance. In the course of the 40-year study, 28 of the men died of the disease, 100 died of related complications, and at least 40 wives and 19 children became infected.8
The public outrage sparked by the Tuskegee revelations was unprecedented, though similar abuses in human subjects research had been reported. The preceding decade of the 1960s was marked by repeated disclosures of unethical conduct in clinical research. From 1963 to 1966, for example, the Willowbrook State School for "mentally defective persons" in New York was the site of a study of the natural history of infectious hepatitis and of the effectiveness of gamma globulin in its prevention and treatment. Researchers at Willowbrook deliberately infected children with the hepatitis virus, later arguing in their own defense that infection was inevitable due to the poor hygienic conditions at the school. Willowbrook was closed to new admissions during the study, but space remained available in the institution's hepatitis program-and parents who wished to admit their children to the school had little choice but to agree to their enrollment in the study. The year 1963 also marked the initiation of a study of cancer immunology at New York City's Jewish Chronic Disease Hospital, where clinical investigators injected live cancer cells into patients hospitalized for various chronic diseases- without the patients' knowledge (although the researchers did claim that oral consent had been sought but not documented). And in 1966, in the New England Journal of Medicine, Harvard's Henry K. Beecher (who chaired the Harvard ad hoc committee that proposed a neurological standard for determining death) described his analysis of 22 ongoing clinical studies involving unethical practices in human subjects research.9 Concluding that such practices were far from uncommon, Beecher ended his controversial exposé with a broadside against the utilitarian defense of their legitimacy: "An experiment is ethical or not at its inception; it does not become ethical post hoc-ends do not justify the means."10 Thus, with the uproar over Tuskegee, a steadily mounting concern, fueled by one revelation of abuse after another, reached such a crescendo that in 1973 Congress began a series of hearings, aiming both to prevent further abuses and to grapple with the paradoxical challenge of harvesting the fruits of biomedical science and technology while mitigating their dangers. The National Commission was born of this resolve.
Over the next four years, the Commission issued seven reports.11 Several were in fulfillment of the Commission's legislative mandate: Research Involving the Fetus (1975), Research Involving Prisoners (1976), Research Involving Children (1977), Psychosurgery: Report and Recommendations (1977), Disclosure of Research Information under the Freedom of Information Act (1977), Research Involving Those Institutionalized as Mentally Infirm (1978). Only at the very end-one is tempted to say as the culmination-of its work did the Commission issue its famed Belmont Report.12
In the Belmont Report, the National Commission began by citing the "troubling ethical questions" raised, not by the Tuskegee Syphilis Study, but rather by the 1946 Nuremberg War Crime Trials, and the prosecution, there and then, of Nazi physicians for their conduct of often horrific experiments involving inmates from the concentration camps. The Nuremberg tribunal ended its written judgment of these physicians and their "crimes against humanity" with the declaration of a ten-point code of ethics for the conduct of research with human subjects, the first element of which reads "the voluntary consent of the human subject is absolutely essential."13 In the Belmont Report, the National Commission acknowledges the Nuremberg Code as the progenitor of "many later codes," but it contends that the general as well as specific rules set forth in these codes often prove to be inadequate in the complicated circumstances of human subjects research-for example, when subjects are incapable of providing voluntary consent. With the conviction that "broader ethical principles will provide a basis on which specific rules may be formulated, criticized, and interpreted,"14 the National Commission asserts that three such principles are "relevant" to human subjects research: respect for persons, beneficence, and justice.15
In the Belmont Report, the National Commission describes these principles as "comprehensive": they are "stated at a level of generalization" that should prove helpful to investigators, human subjects, and interested citizens, and together they "provide an analytical framework that will guide the resolution of ethical problems."16 Principles, in the National Commission's view, are "general prescriptive judgments" that offer "a basic justification for the many particular ethical prescriptions and evaluations of human actions."17 In brief, these principles illuminate the focus for ethical evaluation, directing how we are to think about, and how we are to act to resolve, ethical problems in human subjects research. As for the source of these principles, they are neither the products of pure reason nor the dictates of natural law; nor are they the constructs of philosophers or of professional ethicists. Instead, according to the National Commission, the three principles are beliefs "generally accepted in our cultural tradition":18 they are derived, that is, from what principlists call "the common morality." Such, in outline, is the National Commission's understanding of principles, as is evident in its treatment of the first of the three principles, viz., respect for persons.
The principle of respect for persons embraces two "ethical convictions," each of which has a correlative moral requirement. That is, embedded in each of the two convictions are directions for action or practice; these directions are moral requirements spelling out what is required in any action that seeks to be faithful to the conviction. One of the two convictions is that "individuals should be treated as autonomous agents," and its corresponding requirement is to "acknowledge autonomy." The other conviction is that "persons with diminished autonomy are entitled to protection,"19 and its correlative requirement is to "protect those with diminished autonomy." Thus autonomy, the capacity to deliberate about one's personal goals and to act in accord with these deliberations and goals, looms large among those attributes of persons that merit respect-and respect is what leads us to "give weight to autonomous persons' considered opinions and choices while refraining from obstructing their actions unless they are clearly detrimental to others."20 Recognizing that some persons have not yet acquired or never will fully acquire the developmental capacities critical to the exercise of autonomy, the National Commission asserts that such individuals need protection, to a degree or kind dependent upon the risks and benefits of participation in human subjects research. Finally, in concrete application, the principle of respect for persons makes it imperative to secure informed, voluntary consent when enrolling participants in human subjects research.21
How does the principle of respect for persons, along with the principles of beneficence and justice, figure in the work of the National Commission? One way of answering the question is, of course, to consult the Commission's published reports with an eye on the ethical reasoning that undergirds particular findings and recommendations. Although there are differences from report to report, their logic is consistent: they lay out the questions and issues engendered by the focal topic, summarize and describe current practices and thinking about the topic, and then proceed with ethical analysis. Other sources of insight into the National Commission's deliberations and ethical reasoning are the first-person accounts penned by such participants as Albert Jonsen, a commissioner, and by Tom Beauchamp, a staff philosopher during the Commission's waning days and the principal authorial force behind the ultimate form of the Belmont Report.
In his Birth of Bioethics and other writings, Jonsen hones in on the process of ethical reasoning used by the Commission: he says that the commissioners "believed as principlists" but "worked as casuists." They believed that broad norms exist; that these norms apply to human behavior per se and enjoy widespread acceptance as such, but have special relevance for such circumscribed areas of concern as human subjects research; and that such norms hold in general, though any one may admit of exceptions.22 The commissioners did not, however, begin their deliberations on specific topics with an agreement about governing principles from which more directed guidance could be deduced. Their process was a thoroughly inductive one.
In his recollections, Beauchamp offers a more precise picture of how the National Commission's deliberative process joined principlist convictions with casuist methods:
Casuistical reasoning more so than moral theory or universal abstraction often did function to forge agreement during National Commission deliberations. The commissioners appealed to particular cases and families of cases, and consensus was reached through agreement on cases and generalization from cases when agreement on an underlying theoretical rationale would have been impossible. Commissioners would never have been able to agree on a single ethical theory, nor did they even attempt to buttress the Belmont principles with a theory. 23
Widely esteemed as an authoritative statement of ethical precepts, the Belmont Report is a landmark in the evolution of the ethics of clinical research and of principlism, a theory of ethical justification that has spread beyond the sphere of human subjects research and has, for several decades now, been dominant as well in the clinical sphere, i.e., in relations between physicians and patients.24 One principle in particular has come to prominence, the principle of respect for autonomy, a conceptual offspring of the Belmont principle of respect for persons. While Ruth Macklin seems to treat respect for persons and respect for autonomy as identical principles, a careful reading of the intertwined histories of the ethical concepts of "respect," "persons," and "autonomy" suggests otherwise; indeed, none of these concepts has had or even now has a univocal meaning, though a particular meaning may be dominant at one time or another.
Consider the concept of a person: for the National Commission, that concept embraces every human being, regardless of the degree to which he or she is autonomous. In its breadth, the Commission's concept of a person mirrors the inclusive scope that it has, for example, in the work of theologian Paul Ramsey-although for Ramsey the ultimate source of every person's inviolable worth, regardless of his or her capacity for autonomous self-determination, is God; and the respect owed to every person is a duty that has its ultimate source in God's covenantal relationship with humankind.25 At the time of the National Commission's deliberations, a stark alternative to this understanding of a person could be found in the work of Joseph Fletcher, also a theologian but one who radically circumscribed the concept, restricting it to human beings who have threshold levels of intelligence, self-awareness, self-control, and neocortical function, among other prerequisites.26 For some critics and observers of recent and contemporary bioethics, this narrower sense of personhood-of which the Princeton bioethicist Peter Singer is a prominent exponent-has come to overshadow both discourse and practice, although the broader understanding has by no means been extinguished and survives, for example, in mainstream Catholic moral theology.27 And what the narrower sense champions as essential to humanity is autonomy. Thus, it is not that the concept of a person has been attenuated in the intervening years: rather, the subject of respect has shifted from the person to autonomy,28in the restrictive sense this term has in the moral philosophy of Immanuel Kant. For Kant, human autonomy consists in submission to the moral law. The ultimate test of our moral decisions, choices, and actions is whether these expressions of the self can be universalized as law. The meaning of autonomy that finds assertive expression in contemporary bioethics, however, owes less to Kant than to John Stuart Mill, for whom "liberty" consists in "framing the plan of our life to suit our own character;.doing as we like, subject to such consequences as may follow: without impediment from our fellow creatures, so long as what we do does not harm them, even though they should think our conduct foolish, perverse or wrong."29
The concept of respect has undergone a similar process of evolution, with a tapering of its meaning over time. For Ramsey, respect is a duty, the fulfillment of which demands multiple interrelated modes of responsiveness to the unique, irreducible worth of the person, a worth affirmed not only in honoring the individual and deferring to his wishes, but also in tending to his needs and caring for him. Today, however, respect is often understood more narrowly, as a duty strictly correlative to the individual's rights to privacy and self-determination-a duty to refrain from interfering with the free, unfettered choice of the autonomous individual, a duty that can be set aside only in the interest of protecting another from harm. It is this sense of respect that seemingly animates the principle of respect for autonomy that Macklin champions as central to contemporary medical ethics. And as a description of medical ethics today, her assertion is reasonably accurate.
The critical question, which Macklin never fully explores in her essay, is whether this centrality of respect for autonomy as a bioethical principle should be embraced as an unqualified good for theory and practice in human subjects research, clinical medicine, and beyond. Nor does she note that interest in human dignity as a bioethical concept has been prompted, in part, by the growing sense that the prevalence of autonomy in bioethics and beyond, in American culture and society, reflects an incomplete and inadequate-even a distorted -grasp of humanity and thus of what is at stake in many of the controversies provoked by the advance of biomedicine and biotechnology.30
One such controversy was on the mind of President Bush when, on August 9, 2001, he addressed the nation in a televised speech devoted to articulating and justifying his policy on federal funding for embryonic stem cell research. In his speech, the President also announced his intent to establish, by executive order, a "president's council on bioethics" to advise him on this and other contentious issues engendered by the remarkable but sometimes morally troubling progress of biomedicine and biotechnology. As the establishment of the National Commission was spurred by ethical problems of broad, public significance, so too was the President's Council born of a serious bioethical problem-with implications not only for such moral questions as
What should or should not be done in the sphere of biomedical research? but also for such arguably more fundamental questions as What is a human being? and What are the implications of our humanity for how we pursue the growth of our knowledge and its applications in practice?
With the National Commission and the President's Council, these problems-the subject matter of an ever-expanding field of experts, specialized organizations, and journals-have been brought into the public square for analysis, discussion, reflection, and debate by policymakers, legislators, and the citizens to whom they are accountable. This is the rationale for any national forum in public bioethics.
As initiatives in public bioethics, the National Commission and the President's Council have a key feature in common: they are both creatures of the Federal Government, formed to pursue their missions in the full light of public observation and scrutiny and with public participation. The differences between the two bodies, however, are arguably more interesting and revealing; and this is also true of the Belmont Report when compared to this volume, and of the principle of respect for persons compared to the concept of human dignity. Consider, first, the agents of their respective formations. The National Commission was established through the legislative authority of the U.S. Congress, as was its immediate successor, the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. By contrast, like its immediate predecessor, the National Bioethics Advisory Commission,iii the President's Council was launched by executive authority and, strictly speaking, answers to the President and to the President alone.
The mandates of the two bodies reveal an even more striking difference. The U.S. Congress endowed the National Commission with an ambitious but precisely detailed agenda, along with a set of specified outcomes or required "deliverables"; with one exception, the "deliverables" were all inquiries involving human subjects research, anchored to the explicit expectation that their findings and recommendations would inform, or even decisively shape, the formation of federal law and regulation. Since its inception, the President's Council has labored under an altogether different mandate, as is clear in this passage from Executive Order 13237:
The Council shall advise the President on bioethical issues that may emerge as a consequence of advances in biomedical science and technology. In connection with its advisory role, the mission of the Council includes the following functions: (1) to undertake fundamental inquiry into the human and moral significance of developments in biomedical and behavioral science and technology; (2) to explore specific ethical and policy questions related to these developments; (3) to provide a forum for a national discussion of bioethical issues; (4) to facilitate a greater understanding of bioethical issues; and (5) to explore the possibilities for useful international collaboration on bioethical issues.
The "deliverables" that the Council has been expected to produce are not specified reports on a prescribed list of topics: they are, instead, advice to the President; a forum for public discussion and to foster understanding of bioethical issues; and, by implication, the fruits of its "fundamental" inquiries and of its explorations of "specific ethical and policy questions." As I previously noted, particular problems in bioethics were important in the genesis of both the National Commission and the President's Council; and thus, in the creation of both there was, more or less, a degree of external compulsion or need. The agenda that the President's Council has pursued has not, however, been strictly tethered to the morality of embryonic stem cell research, the dilemma that attended its birth. On several different occasions, for varying lengths of time, the President's Council has explored this topic, as well as the related topic of human cloning, and issued reports on both; but it has also undertaken inquiries into biotechnology and human enhancement, assisted reproduction, organ transplantation, newborn screening, neuroethics, psychopharmacology and children, the determination of death, aging and end of life care, and nanotechnology.31 And the President's Council has both formed and pursued this varied, wide-ranging agenda in complete freedom from any external constraint or pressure-including constraint or pressure from any quarter of the executive branch, including the White House.
The direct link between the deliberations of the National Commission, on the one hand, and policymaking at the federal level, on the other, demanded that the Commission seek and develop among its members a consensus: only agreement on the form and content of its findings and recommendations could provide a firm foundation for federal law and regulations in human subjects research. The U.S. Congress needed clear, unequivocal guidance, especially in addressing difficult, emergent questions about clinical research involving specific populations that are, by definition, vulnerable: fetuses, children, the mentally infirm, and prisoners. And as an ethical framework for all federally funded research involving human subjects, the U.S. Congress sought, as well, a set of norms distinguished, in part, by broad acceptance and endorsement, not only by the members of the National Commission but also by the American public. Although several reports by the President's Council do include recommendations for policymaking (or recommendations with clear implications for policymaking), its inquiries have not been structured or conducted with the overriding aim of agreement among its members; instead, in the words of President Bush's executive order, "the Council shall be guided by the need to articulate fully the complex and often competing moral positions on any given issue.and may therefore choose to proceed by offering a variety of views on a particular issue, rather than attempt to reach a single consensus position."
This particular contrast between the National Commission and the President's Council is not simply one of procedures and aims, for it offers a revealing window on striking differences between their respective historical contexts. The U.S. Congress established the National Commission in 1974, at a time of profound social change ignited by the civil rights and women's movements and one year after the U.S. Supreme Court's historic and, in the years since, increasingly divisive decision in Roe v. Wade . The ideological tensions generated by these events and forces were apparent but nascent in American society. The process of developing and exploiting the potential of biomedicine and biotechnology had been well underway for years, but the effort to reckon with the full (and still uncertain) implications of this potential was in its infancy, as was the field of bioethics itself. The issues that, by Congressional mandate, dominated the agenda of the National Commission were ones that could reasonably command public support and concern: what ethical precepts should guide clinical research, permitting it to go forward on a more secure moral footing? And in justifying its response to this question, in advocating the practical application of the Belmont principles, the National Commission could appeal to beliefs and perceptions that derive their normative authority from widespread acceptance in American society and-especially in the case of the principle of respect for persons, with its focus on autonomy-from deep roots in the American political tradition.
Thirty years later, it would be an understatement to say that much has changed, although many features of the present era were discernible in germinal form at the time of the National Commission. The ideological tensions that led to and were further aggravated by Roe v. Wade have evolved into the stark polarities of today's so-called culture wars, thereby frustrating if not precluding any facile appeal to a common, shared morality. Meanwhile, a steady stream of discoveries in biomedicine and novel applications of biotechnology have extended and strengthened our reach over human biology, equipping us with new tools, not only for curing and ameliorating human disease but also for enhancing certain traits and capacities, for conceiving and gestating human life, and for forestalling the fate that awaits us all, death itself. Today, more than ever before, we seem poised for mastery over many aspects of human life, including those that unite us with nonhuman animals and those that separate us from them. For some, these achievements of the ongoing revolution in biomedicine and biotechnology testify to the triumph of human ingenuity and to the efficacy of the human will to fashion our environment-and ourselves-as we wish. For others, the claim that all these impressive achievements make positive contributions to human flourishing is misguided and even dangerous, neglecting the sober lesson of Tuskegee: that the quest for new knowledge, and for new applications of that knowledge, can be perverted so as to inflict egregious harms on our fellow human beings-harms that go far beyond the failure to secure their voluntary informed consent.
In brief, in light of such deep-seated divisions in the American public, the chance for consensus seems slim, and the goal of agreement may even be ill-advised, at least at this time for a national forum in public bioethics. An alternative goal, challenging but achievable, is to bring broader and deeper insights to the public understanding of the issues of bioethics. In the service of this goal, the President's Council is to undertake, in the words of its charter, "fundamental inquiry into the human and moral significance of developments in biomedical and behavioral science and technology"; it is "to strive to develop a deep and comprehensive understanding of the issues that it considers"; and, it is "to articulate fully the complex and often competing moral positions on any given issue."
These passages from the charter of the President's Council implicitly suggest a critical view of contemporary academic bioethics, and of the way bioethical questions are debated in the public square. Today, for the most part, two justifications are advanced when bioethics seeks to shape policy: first, the utilitarian justification, that the good to be achieved for the many by X, Y, or Z (for example, by embryonic stem cell research or by the use of "net benefit" calculations in organ allocation) far outweighs the harm to the few; and second, the principlist argument that respect for autonomy-that tried-and-true American value-legitimates such controversial practices as unconstrained reproductive decision making, assisted suicide, and euthanasia. Now this depiction of contemporary bioethics is admittedly rendered only in broad strokes. In the decades since the National Commission, discourse in academic bioethics has been diversified by theoretical "voices" other than utilitarianism and principlism: by feminist bioethics, the ethics of care, and communitarianism, as well as by the resurgence of such traditions as virtue ethics and Kant-inspired theories of duty. Nonetheless, the tendency to seek ethical justification for our gathering powers over human nature either in the calculated good of the many or in the primacy of individual autonomy is undeniably prevalent and is mirrored, for example, in Macklin's essay. For some observers, including some members of the President's Council, this tendency is the mark of an impoverished bioethics-a bioethics in need of an account of humanity more probing and comprehensive than that which undergirds the now-prevalent theories of ethical justification. The work of the President's Council-and especially its explorations of human dignity, including the present volume-can be understood as a response to that need.
I shall conclude with a few more comparisons and a prediction. Previously, I highlighted the place of the Belmont Report in the work of the National Commission: it was the Commission's last report and was in part a retrospective endeavor, an effort to reflect back on and clarify the ethical reasoning, implicit and explicit, in the Commission's previously published, "problem-specific" reports. But Belmont was also a prospective endeavor, attempting to prescribe a needed ethical framework for future human subjects research. This volume exhibits a similarly bifocal perspective. Some of its essays look back to older sources of wisdom about human dignity or attempt to explicate invocations of human dignity in the published reports of the President's Council; while others have a more prospective trajectory, seeking to stimulate bioethical inquiry, and propelling it forward in relatively unexplored directions.
For an American readership, some of these explorations may seem rather novel. Unlike the principles enunciated in the Belmont Report, the concept of human dignity is not derived from a common morality of American vintage. The story of dignity's origins and evolution is a complex one, with roots in the Biblical account of human creation as well as in ancient Stoicism and the philosophy of Immanuel Kant, among other sources. To appreciate this complexity and the challenges it poses for dignity as a bioethical concept, one could do no better than read the introductory essay by Adam Schulman, the project director and co-editor of this volume. What is at issue here, however, is the significance of these facts about the origins and development of the concept of human dignity, especially about its distinctly un-American beginnings. Certainly, any national forum in public bioethics should be knowledgeable about and responsive to the unique intellectual and political traditions of the nation it serves. But if its inquiries are to be rigorously fundamental, it will necessarily also look beyond these traditions for an understanding of humanity that is as broad as it is deep. After all, the urgent and fundamental questions at the heart of bioethics do not respect geographical and cultural boundaries.
Finally, a prediction-and an acknowledgement of the partial truth of Ruth Macklin's complaint. Many of the essays in this volume do explore in depth the complex and divergent meanings of human dignity and thus fill a void left open by the published work of the President's Council- until now. I predict, however, that after carefully reading and reflecting on these essays, most readers will reject Macklin's conclusion that human dignity is a "useless" concept and will, instead, find their understanding of questions and issues in contemporary bioethics deepened and enriched. That is the hope and aim of the President's Council in publishing this volume of essays on the bioethical significance of human dignity.
_______________________
i. Hereinafter, "the President's Council."
ii. Hereinafter, "the National Commission."
iii. Created by Executive Order 12975, signed by President Clinton in 1995.
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1. Ruth Macklin, "Dignity Is A Useless Concept," BMJ 327 (2003): 1419-1420.
2. Ibid., p. 1420.
3. See chapter 12, "Genetics, freedom and human dignity," of the Nuffield Council
report, available online at www.nuffieldbioethics.org/go/ourwork/behaviouralgenetics/publication_311.html.
4. Macklin, loc. cit.
5. Ibid.
6. Rapid responses to Macklin's editorial are published online at www.bmj.com/
cgi/eletters/327/7429/1419.
7. See James H. Jones's Bad Blood: The Tuskegee Syphilis Experiment (New York: The
Free Press, 1981).
8. Resources on the history and sequelae of the Tuskegee study are numerous. A
portal to internet-based resources is available online at www.gpc.edu/~shale/humanities/composition/assignments/experiment/tuskegee.html.
9
. Henry K. Beecher, "Ethics and Clinical Research," New England Journal of Medicine 274 (1966): 1354-1360.
10. Ibid. p. 1360.
11. Most of the reports of the National Commission are available online from the
website of the President's Council on Bioethics at www.bioethics.gov/reports/past_
commissions/index.html.
12. The Belmont Report was approved by the National Commission at its 42nd meeting on June 10, 1978, and published in the Federal Register on April 18, 1979.
Citations in this essay are to a reprint of the report included as an appendix (pp.
253-265) to Belmont Revisited: Ethical Principles for Research with Human Subjects,
ed. James F. Childress, Eric M. Meslin, and Harold T. Shapiro (Washington, D.C.:
Georgetown University Press, 2005).
13. For discussion, see Evelyne Shuster, "Fifty years later: the significance of the
Nuremberg Code," New England Journal of Medicine 337 (1999): 1436-1440. The
Nuremberg Code is available online at: http://ohsr.od.nih.gov/guidelines/nuremberg.html.
14. Belmont Report , p. 255.
15. Ibid.
16. Ibid.
17. Ibid., p. 256.
18. Ibid.
19. Ibid., p. 257.
20. Ibid.
21. Ibid., p. 260.
22. Albert Jonsen, "On the Origins and Future of the Belmont Report," in Belmont
Revisited, p. 8.
23. Tom L. Beauchamp, "The Origins and Evolution of the Belmont Report," in
Belmont Revisited, p. 19.
24. For an account of the influence of the Belmont principles on clinical practice, see Eric J. Cassell's "The Principles of the Belmont Report: How Have Respect for Persons, Beneficence, and Justice Been Applied in Clinical Medicine," in Belmont Revisited, pp. 77-95.
25. Paul Ramsey, The Patient as Person: Explorations in Medical Ethics , 2nd ed. (New Haven, Connecticut: Yale University Press, 2002).
26. Fletcher developed these views of personhood and humanity in a series of influential books and articles, including his Morals and Medicine (Princeton, New Jersey: Princeton University Press, 1954) and, later, his Humanhood: Essays in Biomedical Ethics (Buffalo, New York: Prometheus Books, 1979).
27. See, for example, Singer's Rethinking Life and Death: The Collapse of Our Traditional Ethics (New York: St. Martin's, 1994). With respect to Catholic moral theology, see Pope John Paul II's encyclical, Evangelium vitae (1995), available online at www.vatican.va/edocs/eng0141/_index.htm.
28. Two of the more compelling expositions of this argument about the relationship between the Belmont principle of respect for persons and the principle of respect for autonomy are made by M. Therese Lysaught (see her "Respect: Or, How Respect for Persons Became Respect for Autonomy," in The Journal of Medicine and Philosophy 29 [2004]: 665-680) and by Karen Lebacqz, a former member of the National Commission (see her "We Sure Are Older But Are We Wiser?" in Belmont Revisited , pp. 99-110).
29. John Stuart Mill, On Liberty , in Collected Works of John Stuart Mill , ed. John M. Robson (Toronto: University of Toronto Press, 1977 [1859]), vol. XVIII.
30. For a thorough, sustained critique of the prevalence of autonomy in American bioethics and society, see Willard Gaylin and Bruce Jennings, The Perversion of Autonomy: Coercion and Constraints in a Liberal Society , revised and expanded edition (Washington, D.C.: Georgetown University Press, 2003).
31. All of the Council's published reports can be found online at www.bioethics.gov/ reports/.
