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Reflections on the National Bioethics Advisory Commission and Models of Public Bioethics by j a me s F. c hil d re ss

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he National Bioethics Advisory Commission, of which I was a member, was established by a 1995 executive order that identified its “first priority” as “the protection of the rights and welfare of human research subjects.”1 Not surprisingly, then, most of NBAC’s work focused on research involving human subjects or participants. A second priority concerned “issues in the management and use of genetics information, including but not limited to, human gene patenting.”2 NBAC’s charter (in contrast to the executive order) listed this charge as “part B” of the “first priority.” Nonetheless, NBAC never fully developed it.3 In addition to responding to requests and recommendations from the National Science and Technology Council, NBAC could accept suggestions from Congress and the public for bioethical issues it should consider, and it could also identify other issues to consider, and set priorities among them, based on four criteria: the public health or public policy urgency of the bioethical issue, the relation of the bioethical issue to the goals for federal investment in science and technology, the absence of another entity able to deliberate appropriately on the bioethical issue, and the extent of interest in the issue within the federal government. From its first meeting on October 4, 1996, until its charter expired on October 3, 2001, NBAC produced six reports, with 120 recommendations: Cloning Human Beings (1997), Research Involving Persons with Mental Disorders That May Affect Decisionmaking Capacity (1998), Research Involving Human Biological Materials: Ethical Issues and James F. Childress, “Reflections on the National Bioethics Advisory Commission and Models of Public Bioethics,” Goals and Practice of Public Bioethics: Reflections on National Bioethics Commissions, special report, Hastings Center Report 47, no. 3 (2017): S20-S23. DOI: 10.1002/hast.714

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Policy Guidance (1999), Ethical Issues in Human Stem Cell Research (1999), Ethical and Policy Issues in International Research: Clinical Trials in Developing Countries (2001), and Ethical and Policy Issues in Research Involving Human Participants (2001). In what follows, I will make a few observations about principles and moral reasoning in NBAC’s deliberations and about NBAC’s attention to religious beliefs in the context of two bioethical controversies, provide a rough evaluation of NBAC’s impact, and consider three possible models for future public bioethics directed at federal public policy. Principles and Moral Reasoning

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BAC’s charter called for the commission to “identify broad, overarching principles to govern the ethical conduct of research, citing individual projects only as illustrations for such principles.” (Similar though not identical language appears in the executive order.) Most of our recommendations regarding research involving human subjects or participants specified, extended, and deepened commonly accepted principles, including those of the Belmont Report of the National Commission for the Protection of Human Subjects. We also considered whether to add other principles, such as a principle of community, or to interpret the current principles through the lens of the community as well as the individual in order to avoid an excessively individualistic approach. Most often, we specified various accepted principles for the topic at hand. Sometimes, commission members agreed about the public policies that should be adopted but only partially agreed about the reasons. Our work on Cloning Human Beings was one of these occasions. In determining whether to recommend a ban on cloning, we considered which reaMay-June 2017/HASTINGS CENTER REPORT

NBAC faced a distinctive, hotly debated question in preparing its reports on cloning humans and on human embryonic stem-cell research: what is the appropriate role, if any, of religious convictions in formulating public policy in a liberal, pluralistic society? sons, if any, would justify such a policy. The report eventually called for a temporary ban on reproductive cloning, but some critics charged that, as a bioethics commission, NBAC copped out because its recommended ban rested largely on a scientific argument about safety rather than on an ethical argument. That charge is plausible, though, only if harming children-to-be is not ethically relevant. In light of the available scientific evidence at the time, NBAC reached a moral conclusion based on the obligation not to harm potential children or to impose serious risks of harm on them. Safety is a fundamental ethical consideration, and any procedure that creates a substantial risk of harm to children is morally problematic. Subsequent discussions among individual commissioners indicated some disagreement about whether the commission’s recommendation for a ban rested equally on safety and other ethical and social concerns or rested primarily on safety, with the ban allowing further opportunity to address other ethical and social concerns. There is some textual evidence for both interpretations, and individual commissioners may have had different reasons for supporting the ban. In any event, the commission recommended a sunset clause in federal legislation banning human reproductive cloning and calling for review by “an appropriate oversight body” prior to the expiration of the legislation and “widespread and continuing [public] deliberation”4—in short, a national dialogue—on the whole range of ethical and social issues so that society over time could formulate appropriate long-term policies toward human cloning. Furthermore, NBAC’s report attempted to identify, at least in a preliminary way, a range of issues and began to construct a framework for addressing them. However, with a deadline of only ninety days, NBAC did not attempt to resolve—and probably could not have resolved—the ethical and social issues beyond the safety concerns.

mulating public policy in a liberal, pluralistic society? Of course, citizens can make proposals to bioethics commissions from any standpoint, including religious ones. But NBAC specifically solicited religious viewpoints, along with philosophical and other perspectives, as it examined ethical issues surrounding human reproductive cloning and human embryonic stem-cell research. It gave several reasons for attending to religious perspectives alongside philosophical perspectives on these topics:

Religious Convictions and Public Policies

Some commissioners wanted to understand and appreciate religious positions on their own terms—in part because doing so might help them see issues related to human cloning or embryonic stem-cell research in a new light—and yet at the same time several commissioners wanted to learn whether there might be secular equivalents for those posi-

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BAC faced a distinctive, difficult, and hotly debated question in preparing its reports on cloning humans and on human embryonic stem-cell research: what is the appropriate role, if any, of religious convictions in for-

•“all voices should be welcome to the conversation”; •religious traditions “influence and shape the moral views of many U.S. citizens, and religious teachings over the centuries have provided an important source of ideas and inspirations”; •“policy makers should understand and show respect for diverse moral ideas regarding the acceptability of cloning of human beings in this new manner”; •often, religious ideas “can be stated forcefully in terms understandable and persuasive to all persons, irrespective of specific religious beliefs”; •NBAC wanted to determine whether “various religious traditions, despite their distinctive sources of authority and argumentation, reach similar conclusions about this type of human cloning,” since agreement among them, as well as among secular traditions, would be instructive for public policy; and •a range of moral views need to be considered in determining the feasibility and costs of different policies, which might be affected, for example, by vigorous moral opposition. (pp. 7-8, 39-40)

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tions. Some critics charged that we were placing an unfair burden on spokespersons for particular religious traditions by asking them about secular equivalents to their positions.5 In my judgment, it is possible both to consider religious positions in their own integrity and at the same time to consider whether those positions can be translated into a different language (or, at least, whether they overlap with other positions). Just as a position should not be excluded from consideration merely because it is religious, so it should not gain any special advantage just because it is religious. Hence, all views—secular and religious—must be subjected to close public scrutiny. Some views may be internally inconsistent; several together may be mutually incompatible; some may stand in opposition to fundamental tenets of our political morality, such as a commitment to liberty or equality; some may be mistaken about the relevant science; and so forth.6 In the final analysis, in my view, a commission’s processes of gathering information and of deliberating about bioethical policies should attend to the widest possible range of positions, whether philosophical or religious. At the same time, commissions should limit the role of religious convictions in the content and in the justification of public policies. Substantive recommendations of and justifications for public policies should involve (in Robert Audi’s language) sufficient or adequate secular reasons.7 In practice, questions about the role of religious convictions arise for public bioethics bodies only in the context of certain issues, such as the moral status of the embryo or fetus, human reproduction, human genetic modification, and the like. Otherwise—in research involving human subjects or participants, for instance—religious convictions rarely enter directly into the bioethical discourse. Evaluation of NBAC’s Impact

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hat was NBAC’s impact as a public bioethics commission? Questions about the value and effectiveness of commissions focus to a great extent on their goals and how well they realized those goals. NBAC emphasized two goals: •Contributing to public policy—According to the executive order that established it and its charter, NBAC’s primary function was to offer advice to the federal government, particularly the National Science and Technology Council, chaired by the President, and to other “appropriate government entities.” •Contributing to public bioethics education—This goal was also central to our work even though it was not featured in our mandate. (Perhaps it was assumed, or perhaps it was an implication of our authorization to consider sugS22

gestions from the public.) In our processes and reports, we often emphasized the importance of functioning as a public forum, a public deliberative body, and of promoting continuing public bioethical discourse. We imagined our reports contributing to such discourse.

How well did NBAC achieve these goals? Two years after its charter expired, Elisa Eiseman of the RAND Science and Technology Institute prepared an evaluative report, titled The National Bioethics Advisory Commission: Contributing to Public Policy,8 which found evidence that NBAC’s work stimulated and informed public and policy discourse in the United States and abroad on several of the topics it addressed. This impact is difficult to measure, and it could not be gauged merely by determining the extent to which the commission’s recommendations were adopted. At the time of Eiseman’s report, “no federal or state legislation [had] been passed based on any of NBAC’s recommendations” (p. 158). NBAC’s influence was greater on the government agencies responsible for much of the federally funded research involving human participants—the National Institutes of Health, the Food and Drug Administration, and the Centers for Disease Control—which “adopted several of NBAC’s recommendations and . . . issued guidelines for researchers to follow based on those recommendations” (p. 130). Eiseman also reported that professional societies drew on NBAC’s reports and recommendations for policy statements, guidance, and educational materials for their members. Finally, she noted that other countries and international organizations cited the commission’s work and “endorsed some of its recommendations” (p. 130). NBAC’s reports Cloning Human Beings and Human Stem Cell Research received significant media attention, as could have been expected in light of the broad public controversy surrounding these topics. Here, perhaps, NBAC had its greatest success in promoting meaningful public discourse. The Future of Public Bioethics: Different Models

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here are three main types of institutional structures for public bioethics directed at federal public policy, each with distinct advantages and disadvantages.9 First is a standing national commission like NBAC and several other public bioethics bodies, deliberating over a period of time under a broad mandate and with the authority to select some of its own topics. A second possibility is a series of commissions with more focused, targeted, limited mandates, such as organ transplantation or human fetal tissue transplantation research or human embryo research. A major advantage of a standing commission with a broad mandate is that it can mature as a deliberative body, develop practices of collective analysis and reasoning, and May-June 2017/HASTINGS CENTER REPORT

examine a range of bioethical topics in public, yet also be ready to address urgent new topics such as scientific and technological breakthroughs and emergent health care and public health crises. A significant advantage of a targeted, focused commission is that its members can be selected on the basis of their potential contributions to the specific task at hand, which the commission can pursue with concentrated attention and effort. Of course, these first two types can coexist: it would be possible (though perhaps awkward) for the federal government to set up a single-task commission to address some urgent topic not well suited for a broad commission already in existence. We should not overlook a third possibility—nongovernmental committees that produce reports and recommendations at the request and under the sponsorship of governmental bodies. I think, in particular, of consensus studies undertaken by committees appointed by the National Academies of Science, Engineering, and Medicine. Often established in response to requests and with support from a federal entity, these independent committees prepare single-issue consensus reports, such as recent reports from the National Academies on novel techniques for prevention of maternal transmission of mitochondrial DNA diseases and on human gene editing. Such committees may appear to be less “political” than a presidential or a congressional commission, but they usually have a problematic limitation: even though they often include public members and often solicit public input as they gather information, their process of analysis and deliberation is not as publicly transparent as that of governmental bioethics commissions. Having served on all three types of institutional mechanisms at one time or the other, I believe that each can

contribute significantly to governmental bioethical policymaking as well as to public bioethical education and public culture. The nature of the topic that needs attention may help determine whether it can best be addressed by a standing national commission, a temporary single-issue national commission, or an independent nongovernmental committee. Which is best for a particular topic also depends in part on process values such as transparency and efficiency. 1. Exec. Order 12975, Fed. Reg., 60, no. 193 (October 5, 1995). 2. Ibid. 3. National Bioethics Advisory Commission Charter, https://bioethicsarchive.georgetown.edu/nbac/general.html. 4. National Bioethics Advisory Commission, Cloning Human Beings: Report and Recommendations of the National Bioethics Advisory Commission, Rockville, MD, June 1997, iv. 5. See the discussion in C. Campbell, “Prophecy and Policy,” Hastings Center Report 27, no. 5 (1997): 15-17. 6. Some ideas and formulations in this section draw from J. F. Childress, “Religion, Morality, and Public Policy: The Controversy about Human Cloning,” in Notes from a Narrow Ridge: Religion and Bioethics, ed. D. S. Davis and L. Zoloth (Hagerstown, MD: University Publishing Group, 1999), 65-85. 7. See R. Audi, “Liberal Democracy and the Place of Religion in Politics,” in R. Audi and Nicholas Wolterstorff, Religion in the Public Square: The Place of Religious Convictions in Political Debate (Lanham, MD: Rowman & Littlefield, 1997), 24-33. The principles of (adequate) secular rationale and (adequate) secular motivation are part of Audi’s conception of civic virtue. 8. E. Eiseman, The National Bioethics Advisory Commission: Contributing to Public Policy (Santa Monica, CA: RAND, 2003). 9. Some of the ideas and language in the following five paragraphs are drawn from my essay “The Bioethical Approach,” in the Miller Center’s project First Year 2017, presenting a series of essays directed at the U.S. president’s first year. It appears at http://www.firstyear2017.org/essay/the-bioethical-approach.

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