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Biomedical Politics (1991)

Chapter: Deliberations of the Human Fetal Tissue Transplantation Research Panel

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Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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Deliberations of the Human Fetal Tissue Transplantation Research Panel

James F. Childress

This case study focuses on the deliberations of the Human Fetal Tissue Transplantation Research Panel during the period September-December 1988. It analyzes the major debates that occurred about conflicting principles and values as a majority of the panel reached the conclusion that the use of human fetal tissue in transplantation research, following deliberate abortions, is “acceptable public policy” if certain “guidelines” are in place. The panel's deliberations occurred in an evolving context that comprised medical-scientific, social-political, legal, and cultural factors. To interpret the panel's deliberations and recommendations, it is necessary to discuss aspects of this context and the background to the panel's efforts.

In addition to drawing on the references and other bibliographic materials listed below, the author held telephone conversations in June 1990 with several people who had been involved at the National Institutes of Health (NIH) and the Department of Health and Human Services (DHHS) in decision making, question formation, panelist selection, and other activities involved with human fetal tissue trans-

James F. Childress is the Edwin B. Kyle Professor of Religious Studies and Professor of Medical Education at the University of Virginia. He served on the Human Fetal Tissue Transplantation Research Panel.

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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plantation research. The author is most appreciative for helpful comments from the following: Jay Moskovitz, Charles McCarthy, Miriam Davis, Barbara Harrison, Judy Lewis, and LeRoy Walters. Of course, they are not responsible for errors of fact or interpretation in the case study.

BACKGROUND AND CONTEXT

By the mid-1980s, promising animal research on fetal tissue transplantation that had been under way for some time both in the United States and abroad had led several researchers in other countries to experimentally transplant human fetal tissue, following elective or spontaneous abortions, into human patients with Parkinson's disease. In addition, in the United States, NIH had awarded an extramural grant to Hans Sollinger of the University of Wisconsin to study transplantation of human fetal pancreatic cells into patients with diabetes. In late 1987 NIH received a request from intramural investigators at the National Institute of Neurological and Communicative Disorders and Stroke for permission to undertake research transplanting human fetal neural tissue, following elective abortions, into patients with Parkinson 's disease. Even though he had the legal authority to approve this research—and some members of his staff urged him to do so—James B. Wyngaarden, the director of NIH, sought approval from the Office of the secretary of DHHS to “permit maximum review of this sensitive area of research” (Office of Science Policy and Legislation, 1988). Wyngaarden's memorandum of October 23, 1987, to Robert Windom, then assistant secretary for health, noted that the proposed research had “the potential for publicity and controversy ” and “may be characterized in the press as an indication that the Department is encouraging abortions,” even though the “research will in no way be a factor in a woman's decision to have an abortion and no Federal funds will directly or indirectly support abortion.” The memorandum also stressed NIH's conviction that “on balance the importance of this research outweighs any potential for adverse publicity.”

In a March 22, 1988, memorandum to the director of NIH, the assistant secretary for health declared a moratorium on the use of federal funds to support human fetal tissue transplantation research (hereafter, HFTTR) that used tissue from induced abortions until NIH could convene “special outside advisory committees” to hear testimony, deliberate, and offer their recommendations. His memorandum identified 10 questions that such committees should address (see Appendix A), which focused mainly on the connection or linkage between abortion and the use of human fetal tissue in research. The assistant secretary 's staff

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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developed the questions on the basis of an analysis of the existing literature and after consultation with three academic bioethicists. Whereas the NIH director's memorandum focused on the public controversy that might result from the federal government's sponsorship of such research, the assistant secretary's staff perceived the problem as largely ethical.

There are several relevant features of the context of the deliberations of NIH, DHHS, and the HFTTR panel. First, there had been earlier research that used human fetal tissue, and many of these projects had support from NIH. In fiscal year 1987, NIH awarded 116 grants and contracts (estimated at $11.2 million) for research that involved the use of human fetal tissue (Office of Science Policy and Legislation, 1988). Most of this research, however, had no direct therapeutic intent and did not involve transplantation. One widely reported earlier example of the use of human fetal tissue in research was in the development of the polio vaccine. Some commentators (e.g., Nolan, 1988) distinguish using cadaveric fetal tissue to develop a treatment from using it as a treatment.

Second, animal research had shown that transplantation of human fetal neural tissue might provide therapeutic benefits for patients with Parkinson's disease. Fetal tissue has special features that make it potentially useful in this case—for example, it is immunologically more naive than developed tissue, and it grows and differentiates rapidly. Furthermore, fetal tissue is widely available from the 1.5 million abortions performed in the United States each year.

Third, the U.S. Supreme Court decision in Roe v. Wade in 1973 overturned restrictive abortion laws but failed to resolve the serious moral and political debate and conflict about abortion in the United States. Opponents of abortion have been quite active since then and have regularly challenged practices, policies, or laws that appear to encourage abortions.

Fourth, beyond the legal framework for abortion, the transfer of human cadaveric tissue is governed by the Uniform Anatomical Gift Act (UAGA), which was adopted by all 50 states and the District of Columbia in the late 1960s and early 1970s. In general, the UAGA permits either parent, subject to the known objection of the other, to donate fetal tissue, following spontaneous or deliberate abortions, for research, education, or transplantation. However, some states restrict the use of fetal materials following induced abortions in some research (DHHS/NIH, 1988; see vol. 1, p. 11, and vol. 2, app. F). Federal regulations permit research “involving the dead fetus, macerated fetal material, or cells, tissue, or organs excised from a dead fetus in accordance with any applicable State or local laws regarding such activities” (45 CFR 46.210). Many of the existing federal regulations focus on research involving the living

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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fetus rather than on the use of tissue derived from fetal remains. Also of relevance is the National Organ Transplant Act of 1984 with subsequent amendments, which will be discussed later.

PROCESS

During early summer 1988, NIH appointed the HFTTR panel to meet in the fall to respond to Assistant Secretary Windom's questions and then to submit its finished report to the NIH Director's Advisory Committee, a diverse outside group that advises NIH on policy matters. NIH had reason to expect that a favorable recommendation from the panel and the advisory committee would lead to DHHS authorization to NIH to approve the research. On the recommendation of an internal, informal ad hoc committee, NIH appointed Arlin Adams, a retired federal judge from Philadelphia, to chair the fetal tissue panel; as a Republican opposed to abortion, he was considered an ideal choice. In addition, NIH appointed special panel chairpersons for scientific issues (Kenneth J. Ryan, a physician and scientist) and ethical and legal issues (LeRoy Walters, an ethicist).

Members of Congress, members of the executive branch, and organizations with an interest in the research, among others, submitted nominations for the 21-person panel; the various categories of nominations were ethicists, lawyers, biomedical researchers, clinical physicians, public policy experts, and religious leaders. The ad hoc committee (which included the panel's chair and co-chairs and a member of the NIH Director's Advisory Committee) considered the nominations in early July, emphasizing in their selections the qualifications of proposed panelists and the need for more women and minority panel members. There was vigorous outside support for particular nominees, much of which centered on opponents of abortion; three—James Bopp, James Burtchaell, and Daniel Robinson—were selected. In a departure from the nominations model being used, one senator asked to review the proposed list and personally discussed the proposed panelists with NIH officials prior to their invitation to serve. One of the conditions for serving on the panel was that the prospective panelist had to agree to be available for the first meeting, which was already planned for September 16-18, 1988. After the members of the panel were announced, defenders of HFTTR worried about the presence of strong opponents of abortion on the panel; critics of HFTTR, on the other hand, thought they discerned an overall bias among the panel in favor of such research. (For a list of panelists, see Appendix B.)

Just prior to the panel's first meeting, the White House leaked a draft executive order that proposed a ban on transplantation research

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
×

using human fetal tissue following elective abortions. Otis Bowen, then secretary of health and human services, responded that he would not impose new curbs on HFTTR until the advisory committees could make their final recommendations or until he received a direct order from the President. Over the next several weeks, 50 members of Congress wrote to the President urging him to promulgate the executive order that would signify his commitment to protecting unborn lives; several hundred physicians and others also wrote, offering their strong support for the proposed order. However, no action was taken.

In September 1988, the HFTTR panel convened to hear scientific, legal, and ethical views from more than 50 invited speakers as well as testimony from representatives of public interest groups. All meetings of the panel were opened to the public after an initial announcement of several closed, executive sessions drew a vigorous negative reaction. When it became clear that the three-day meeting would not be sufficient for the panel to complete its deliberations and offer its response, a second meeting was set for October 20-21. In a draft report considered at the second meeting, the panel offered relatively brief responses to the assistant secretary's questions but little justification for them. During the meeting there was discussion about whether such justifications could be developed without a third meeting; the panel decided to submit only what had been developed and accepted by the time of adjournment. But at the end of the second meeting, James Bopp and James Burtchaell brought in a long dissent to the report. Several other panelists were concerned that this long dissent would overwhelm the brief responses in the report, especially considering that the recommendations were left without sufficient justification. A third meeting was scheduled for December 5, with members of the panel preparing and circulating in advance drafts of “considerations ” for each response to the assistant secretary's 10 questions. At that meeting the report was put into final form: it contains the responses and considerations, along with the panel vote, for each question; a brief summary of the current scientific literature relevant to HFTTR; three concurring statements (Judge Arlin Adams; Aron Moscona, joined by two other panelists; and John Robertson, joined in whole or in part by ten other panelists); two dissenting statements (by David Bleich and by James Bopp and James Burtchaell); and a final dissenting letter (Daniel Robinson). Volume 2 of the report contains the written testimony submitted to the panel.

After observing the meetings, science writer Jeffrey Fox described the panel's process: “Despite the diversity of views held by members of the ad hoc panel, the group steadfastly tried to follow a consensual approach during its deliberations. Although consensus was difficult to achieve, the panel members consistently tried to accommodate one

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
×

another's respective positions. Thus, in most cases, very disparate philosophical positions were melded into a coherent stance that was deemed acceptable by a substantial majority of the panel. However, neither of these observations should be taken to suggest that the debate within the panel was somehow constrained by the majority viewpoint, as indeed it was not” (Fox, 1988). The panelists spent a great deal of time debating and modifying the wording of particular responses to gain as much consensus as possible. The majority frequently compromised on the exact wording, but the minority often voted against the response that had been carefully worked out through compromise.

The panel experienced other constraints, including the pressure to complete a report as quickly as possible and the lack of staff and resources; originally the panel had been expected to offer a report on the basis of one meeting. The tight schedule, the pressure for a prompt report, and the limited resources all contrasted sharply with the arrangements for other bodies dealing with ethical issues in science and health care, such as the National Commission for the Study of Ethical Problems in Biomedical and Behavioral Research, the President's Commission for the Study of Ethical Problems in Medicine, and the Task Force on Organ Transplantation. Another major constraint was the 10 questions raised by the assistant secretary. As noted earlier, these questions focused on issues related to abortion rather than on issues parallel to transplantation of other cadaveric tissue. Thus, it is not surprising that the panel's deliberations concentrated to a great extent on ethical and societal concerns about abortion without directly addressing the morality of abortion.

THE MORAL STATUS OF THE FETUS AND THE MORALITY OF ABORTION

With this sketch of the background, context, and process of the panel 's deliberations and recommendations, we can now turn to an examination of the major explicit and implicit issues it faced. One of the major issues involved the status of fetal life—for example, whether the fetus should be viewed as tissue, as a potential human life, or as a living human being. Certainly the members of the panel differed greatly in their individual views on this question, which required some of them to oppose the use of fetal tissue following abortions. Others contended that it was possible to separate, morally and practically, abortions and the use of fetal tissue, despite the fact that elective abortions provide the bulk of tissue for HFTTR.

Some panel members contended that their acceptance of various guidelines or safeguards to separate abortion decisions from decisions about the use of fetal tissue did not imply that they viewed abortion as immoral. The recommended guidelines were intended to reduce the

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
×

likelihood that the possibility of donation would influence the pregnant woman's decision to abort. Even if abortion were not viewed as immoral, these guidelines could be accepted for various reasons, including (1) the desire to allay the moral controversy in our society about abortion, or (2) the desire to reduce the vulnerability of some pregnant women to exploitation and coercion because of the need for fetal tissue. These reasons are sufficient to justify the guidelines, without the presupposition that abortion is immoral.

Thus, while accepting the proposition that “it is of moral relevance that human fetal tissue for research has been obtained from induced abortions,” the majority of the panel nevertheless held that, in view of the significant medical goals of HFTTR and the legality of abortion, “the use of such tissue is acceptable public policy.” In the consideration it noted for this response, the panel observed that “a decisive majority of the panel found that it was acceptable public policy to support transplant research with fetal tissue either because the source of the tissue posed no moral problem or because the immorality of its source could be ethically isolated from the morality of its use in research” (DHHS/NIH, 1988:2). Thus, the panelists who voted for using fetal tissue for research subscribed to one of two views: (1) that abortion is morally acceptable and the use of aborted fetal tissue for HFTTR is morally acceptable; or (2) that abortion is “immoral or undesirable,” although legal, and HFTTR can be morally separated from abortion and can proceed with appropriate safeguards. The majority rejected the position that HFTTR should be prohibited from receiving federal funds because it is, morally speaking, inextricably linked to or would lead to immoral abortions.

COMPLICITY, COLLABORATION, AND COOPERATION IN MORAL EVIL

During the panel's deliberations, James Burtchaell, a theologian at Notre Dame University, invoked the language of complicity, collaboration, and cooperation in the moral wrongdoing of others to stress what he considered the impossibility of separating, at least in practice, the use of fetal tissue from the (immoral) abortions that produced it (Bopp and Burtchaell, 1988:63-70). Particularly important for Burtchaell was a form of indirect association that implied moral approval. Cooperation that involves casual actions—for example, driving the getaway car after a robbery—must be distinguished from actions that only symbolize, convey, or express approval but do not materially contribute to the actions themselves. Burtchaell invoked various analogies. One involved the banker in a town in Florida who decided to accept deposits from participants in the drug trade on the grounds that this action would

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
×

benefit the community and that the drug trade would continue regardless of what the banker did. Another was of the researcher who visits an abortionist each week to obtain fetal tissue but who each time expresses his disapproval while planning to return the next week. Burtchaell contends that these actions involve complicity in the moral wrongdoing of others, whether drug trafficking or abortion.

According to written testimony from the Bishops' Committee for ProLife Activities of the National Conference of Catholic Bishops, “it may not be wrong in principle for someone unconnected with an abortion to make use of a fetal organ from an unborn child who died as the result of an abortion; but it is difficult to see how this practice can be institutionalized [including arrangements to ensure informed consent] without threatening a morally unacceptable collaboration with the abortion industry” (DHHS/NIH, 1988:E42; for a slightly different version, see G1). What may be possible in the abstract, in principle, or in theory is not possible in practice because of the institutionalization of abortion and the way fetal tissue is currently procured. James Bopp and James Burtchaell write in their dissent: “Our argument, then, is that whatever the researcher 's intentions may be, by entering into an institutionalized partnership with the abortion industry as a supplier of preference, he or she becomes complicit, though after the fact, with the abortions that have expropriated the tissue for his or her purposes. It is obvious that if research is sponsored by the National Institutes of Health, the Federal Government also enters into this same complicity” (Bopp and Burtchaell, 1988:70).

There are at least two responses to the charge of moral cooperation in the wrongdoing of others. One is to deny that the primary action, in this case, abortion, is morally wrong; another is to deny that the use of aborted fetal tissue implies approval of abortion. The panel did not try to resolve the debate about the morality of abortion, but the majority insisted that it is at least possible to draw a moral line between the use of fetal tissue and the abortions that make the tissue available in such a way as to ensure that unacceptable moral cooperation does not occur (DHHS/NIH, 1988:2). The majority of the panel noted that it is possible to use organs and tissues from homicide and accident victims without implying approval of homicides and accidents and without diminishing efforts to reduce their occurrence (Robertson, 1988:31-32). Even if one were to accept that abortion is immoral, “it does not follow that use of fetal remains makes one morally responsible for or an accomplice in abortions that occur prior to or independent of later uses of fetal remains” (Robertson, 1988:31). In addition, the majority statement underlined the fact that abortions are already being performed with the result that fetal tissue that could benefit others is being discarded rather than used.

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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Several members of the panel strongly objected to the analogies to Nazi research on living subjects invoked by James Bopp and James Burtchaell to illustrate moral complicity in the wrongdoing of others (Bopp and Burtchaell, 1988:63-70). Critics contended that there are several morally relevant differences between the use of tissue from dead fetuses following debatably immoral abortions and the clearly immoral actions of Nazi investigators who experimented on living subjects against their will (Robertson, 1988:32-33; Moscona, 1988:27-28). In a concurring statement, a majority of the panelists noted that the complicity claim “is considerably weakened when the act making the benefit possible is legal and its immorality is vigorously debated, as is the case with abortion. Given the range of views on this subject, perceptions of complicity with abortions that will occur regardless of tissue research should not determine public policy on fetal tissue transplants” (Robertson, 1988:33).

Panelists also noted that the loose concept of complicity in the moral wrongdoing of others could be turned in other directions, perhaps even against the positions held by those who invoked it in the context of HFTTR. For example, critics of the application of the concept of complicity in HFTTR argued that a failure to provide sex education, contraceptives, and social support for pregnant women could be construed as modes of complicity and cooperation in the actions of abortion. In this instance, the alleged complicity or cooperation is the material contribution of causal factors through omission.

Recognizing that some potential participants in research, whether as patients or as professionals, might want to avoid any connection and thus any felt complicity with abortion, the panel recommended that “potential recipients of such tissues, as well as research and health care participants, should be properly informed as to the source of the tissues in question” (DHHS/NIH, 1988:1-2).

INCREASE IN THE NUMBER OF ABORTIONS

One fundamental question in the fetal tissue controversy is whether its use in transplantation research would result in an increase in the number of abortions and if so, whether it would still be justified. Answers to this question hinge in part on matters that should be resolvable by empirical data—the reasons why women have abortions. The panel's report noted that “the reasons for terminating a pregnancy are complex, varied, and deeply personal” and “regarded it highly unlikely that a woman would be encouraged to make this decision [to abort] because of the knowledge that the fetal remains might be used in research” (DHHS/NIH, 1988:3). In addition, the panel noted the lack of any evidence

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
×

that, over the past 30 years, the possibility of donating fetal tissue for research purposes had resulted in an increase in the number of abortions (DHHS/NIH, 1988:3). Furthermore, according to the panel majority, it is possible to set up guidelines or safeguards to reduce the likelihood of an impact on the incidence of abortion. Defenders of the minority position argue, however, that knowledge of this possibility of benefit from the provision of fetal tissue would make a difference in some, perhaps even many, cases. There are several possible scenarios addressed by the critics and defenders of HFTTR; they are organized below more systematically than in the HFTTR panel's report.

General Altruism

First, would the possibility of donating fetal tissue to benefit unrelated and unknown patients through transplantation play a role in a woman's decision to abort? Neither the defenders nor the critics of HFTTR can find strong evidence for their claims about the potential impact of this possibility on individual abortion decisions (DHHS/NIH, 1988:3). The debate thus hinges on speculations about women's abortion decisions and on answers to the moral question about which way society should err in such a situation of doubt.

Critics charge that HFTTR would reduce some pregnant women's ambivalence about abortion so that the possibility of an altruistic act—what could be called “general altruism”—would probably lead to some abortions that would not otherwise have occurred. Defenders of HFTTR respond that such a claim is speculative: there is only sketchy evidence about women's decision making about abortion and no evidence that the long-time possibility of donating fetal tissue to benefit others through research (although only rarely through transplantation research) has led to any abortions that would not otherwise have occurred (DHHS/NIH, 1988:3). Even if it was known that the possibility of donating fetal tissue provided a “motivation, reason, or incentive for a pregnant woman to have an abortion,” this would not constitute a prohibited “inducement” (under federal law) because it is not a promise of financial reward or personal gain and is not coercive (DHHS/NIH, 1988:4).

In such complex personal decisions as abortion, it is difficult to determine the role of various motives, such as general altruism, and particularly whether these motives are necessary or sufficient for an action. In the case of panel members, however—whether their motives were to protect the fetus, to prevent exploitation and coercion of pregnant women, or to allay moral controversy—the majority of them proposed guidelines to reduce the likelihood that HFTTR would lead some women to abort when they would not otherwise have done so. These guidelines

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
×

include efforts to prevent the stimulation or encouragement of general altruistic motives on the part of pregnant women.

According to the panel, “the decision and consent to abort must precede discussion of the possible use of the fetal tissue and any request for such consent as might be required for that use,” and “informed consent for an abortion should precede informed consent or even the preliminary information for tissue donation,” except when the pregnant woman requests such information (DHHS/NIH, 1988:3-4). Ideally, the request and the decision to donate should follow the abortion decision itself, but because postmortem tissue deteriorates quickly and cryogenic storage is not possible for many transplants, “the pregnant woman must be consulted before the abortion is actually performed” (DHHS/NIH, 1988:10).

In a concurring statement prepared largely by John Robertson and joined, at least in part, by 10 other panel members, a majority of the panelists allow that even an increase in the number of abortions would not be a decisive reason for rejecting federal support of HFTTR: “Yet even if some increase in the number of family planning abortions due to tissue donation occurred, it would not follow that fetal tissue transplants should not be supported. Surely it does not follow that any increase in the number of abortions makes fetal tissue transplants unacceptable” (Robertson, 1988:34). Drawing a distinction between means, ends, and consequences, this argument denies that an increase in the number of elective abortions is a means to the end of HFTTR. Instead, an increase in the number of elective abortions is a possible consequence, a risk, of the use of HFTTR. Risk is a probabilistic notion and includes the probability of a negative outcome. It is thus necessary to judge the likelihood of a negative outcome along with its magnitude. The risk of an increase in fetal deaths is comparable to other losses of life in the pursuit of important societal goals, such as automobile design, highway engineering, and bridge building. According to Robertson's concurring statement, “[t]he risk that some lives will be lost, however, is not sufficient to stop those projects when the number of deaths is not substantial, when the activity serves worthy goals and when reasonable steps to minimize the loss have been taken” (Robertson, 1988:34). Furthermore, a “more stringent policy is not justified for fetal tissue transplants just because the risk is to prenatal life from some increase in the number of legal abortions” (Robertson, 1988:34-35).

Noting that the risk of an increase in the number of abortions is speculative at best, the report's concurring statement stresses that similar speculative and tenuous risks that the society might encourage, as well as legitimate deaths resulting from homicide, suicide, and accidents, to gain organs for transplantation are not viewed as a sufficient reason to stop using organs from these sources (Robertson, 1988:35 [fn. 23]). In a

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
×

later response (Mason, 1990), Assistant Secretary for Health James Mason contended that in the argument above, the concurring statement simply disregarded moral and ethical considerations. Nevertheless, its signers view it as offering a different balance of moral and ethical considerations instead of a denial of those considerations. In addition, the panel maintained that its recommended guidelines would reduce the probability of an increase in the number of abortions.

A different risk-benefit calculation appears in the dissent by J. David Bleich, who holds that “these mitigating safeguards [the ones proposed by the panel] notwithstanding, intellectual integrity compels recognition that the goal of preventing an increment in the total number of abortions performed is not totally attainable” (Bleich, 1988:39). He interprets the majority's proposals as an effort to balance interests “through a policy of damage containment” (Bleich, 1988:40). By contrast, he notes that the duty to rescue human life through fetal tissue transplants is diminished because the studies at issue are research protocols with uncertain, distant benefits rather than certain immediate good for identified lives, and because the “moral harm” of the increase in the number of abortions is certain and immediate. Hence, “on balance, the duty to refrain from a course of action that will have the effect of increasing instances of feticide must be regarded as the more compelling moral imperative” (Bleich, 1988:43). This formulation appears to leave open the possibility of a different balance if the procedure reached the point, without federally funded research, of providing an immediate, certain benefit. By contrast, the majority of the panel held that the increase in the number of abortions was not certain and immediate and could be avoided at least in part through the proposed guidelines.

Specific Altruism

The second scenario raises the possibility that a pregnant woman (or a woman contemplating pregnancy) might donate fetal tissue to help a family member or acquaintance, which could result in abortions that would not otherwise have occurred. In contrast to the motivation of general altruism considered above, this motivation might be called specific altruism, that is, beneficence toward specific known individuals. Because of dramatic proposals by a few women to become pregnant in order to abort and donate fetal tissue to help a beloved family member, and its recognition of the strength of specific altruistic motives, the panel recommended this guideline: “There should be no Federal funding of experimental transplants performed with fetal tissue from induced abortions provided by a family member, friend, or acquaintance. Absent such prohibition, the potential benefits to friends and family members

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
×

might encourage abortion or encourage pregnancy for the purpose of abortion—encouragements that the panel strongly opposed” (DHHS/NIH, 1988:8). Another formulation reads: “The pregnant woman should be prohibited from designating the transplant-recipient of the fetal tissue” (DHHS/NIH, 1988:3). In yet another recommendation with the same import, the panel held that “anonymity between donor and recipient shall be maintained, so that the donor does not know who will receive the tissue, and the identity of the donor is concealed from the recipient and transplant team” (DHHS/NIH, 1988:4).

These recommendations clearly reflect the panel's concerns about maternal welfare as well as concerns about the morality of abortion. Moreover, they are based on the lack of evidence that “a prohibition against the intrafamilial use of fetal tissue would affect the attainment of valid clinical objectives” (DHHS/NIH, 1988:8). For example, in fetal tissue transplants for diabetes, it would be medically contraindicated to use intrafamilial transplants, but no definitive conclusions can be drawn at this time about other conditions for which fetal tissue transplantation may be a possibility. Nevertheless, in the considerations it noted for its response, the panel referred to expert testimony that “if circumstances change there may be reasons to modify the prohibition it was strongly urged that the Secretary for Health and Human Services review these recommendations at regular intervals” (DHHS/NIH, 1988:8). In the last section of the concurring statement, which was prepared by John Robertson and signed by ten other panelists (with the exception of this section, in which one of the ten did not concur), this position is elaborated: “If the situation changes so that the supply of fetal tissue from family planning abortions proves inadequate, the ban on donor designation of recipients and aborting for transplant purposes should be re-examined. The ethical and legal arguments in favor of and against such a policy would then need careful scrutiny to determine whether such a policy remains justified” (Robertson, 1988:38).

Incentives of Financial Gain

In a third way—beyond general and specific altruism—the possibility of HFTTR could provide another motive for abortion in the shape of financial incentives for the provision of fetal tissue. Congress had already addressed this issue by passing an amendment (which Ronald Reagan signed into law) to the National Organ Transplant Act that prohibited the transfer of human organs (including fetal organs and their subparts) for “valuable consideration, or payment. ” The panel's report supported this position, stressing that “it is essential that no fees be paid to the woman to donate, or to the clinic for its efforts in procuring fetal

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
×

tissue (other than expenses incurred in retrieving fetal tissue)” (DHHS/NIH, 1988:9). As is true of several of the panel's other recommendations, this one could be justified as a way to protect fetuses from abortion, to protect women from exploitation and coercion, to reduce moral controversy, and even to help avoid societal commodification of “human” body parts.

SOCIETAL LEGITIMATION OF ABORTION DECISIONS AND PRACTICES

Although the topic of societal legitimation tends to collapse into issues of complicity in and encouragement of abortions, it may be useful to consider it separately. According to Dorothy Vawter (1990), “to legitimate an act or practice is to justify or promote it in such a manner that others will become more inclined to regard it as acceptable and to engage in it.” On the one hand, critics contend that federally funded HFTTR following elective abortions would tend to legitimate abortion because of the difficulty—or even the impossibility —of distinguishing within the expenditure of federal funds (1) approval of the use of fetal tissue from elective abortions and (2) approval of the elective abortions that produced the fetal tissue. Rabbi David Bleich argued in the panel's report that “[f]ederal funding conveys an unintended message of moral approval for every aspect of the research program ” (Bleich, 1988:40[fn. 2]). By contrast, defenders of the research could argue that the approval of the use of federal funds in treatment of end-stage renal disease through organ transplantation does not constitute approval of the homicides, suicides, and accidents that provide the occasions for organ donation (Robertson, 1988:35[fn. 23]). Furthermore, they might note that there is no evidence that efforts to reduce such events have abated in order to maintain the supply of needed organs.

A second version of the societal legitimation argument focuses on society's acceptance of the benefits of human fetal tissue donations following elective abortions rather than on government funding. It would be difficult, perhaps even impossible, critics argue, for society to accept the benefits of HFTTR without becoming increasingly inclined to accept as legitimate the abortions that make the benefits possible. (Such a legitimation would be likely to occur even if no federal funds were used to support HFTTR protocols.) Thus, if HFTTR were to confer substantial benefits in the form of new life-saving or life-enhancing procedures, society would become less likely to delegitimate abortion by declaring many acts of abortion illegal (provided future Supreme Court decisions make such declarations more possible). It is not likely that society will renounce either the benefits of HFTTR or the decisions and practices that make the benefits possible.

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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Because of the panel's focus on federal funding, it only addressed the first version of the societal legitimation argument. The panel maintained that this symbolic societal legitimation could be avoided by the separation measures it proposed (see the earlier discussion of complicity). The second version of the societal legitimation argument focuses more on society's acceptance of abortion decisions and practices rather than on individual decisions, and it may not be directly countered by the panel's arguments that its proposed separation measures would reduce the likelihood that HFTTR would encourage abortion decisions by particular women.

A final criticism of societal legitimation appears in the panel's report in the dissenting letter by Daniel Robinson, who argued “that induced abortion is a moral wrong and that it cannot be redeemed by any actual or potential ‘good' secured by it. Thus, the possible medical benefits held out by research tissues obtained by such measures cannot be exculpatory” (Robinson, 1988:73). This argument was offered after the report was completed, but the panel could have responded that it attempted to separate abortion decisions and practices from decisions and practices regarding the use of fetal tissue. HFTTR using fetal tissue from elective abortions in no way redeems or exculpates the abortions themselves. It only involves the use of tissue that would otherwise be discarded or incinerated, without implying approval (or, for that matter, disapproval) of the abortions themselves, just as the use of tissue from adult cadavers does not imply approval of—or redeem or exculpate—the homicides or negligent accidents that resulted in death.

DISPOSITIONAL AUTHORITY OVER FETAL REMAINS

The fourth question posed by Assistant Secretary Windom was as follows: “Is maternal consent a sufficient condition for the use of the tissue, or should additional consent be obtained? If so, what should be the substance and who should be the source(s) of the consent, and what procedures should be implemented to obtain it?” This question engendered one of the most divisive debates of the HFTTR panel as members wrestled with the problem of dispositional authority over fetal tissue following abortions, including the authority to transfer fetal tissue for use in transplantation research. The vote in favor of the sufficiency of maternal consent (within limits) was 17 yes, 3 no, and 1 abstention, the smallest majority of any answer to any question.

The argument surrounding this question also focused on ways to separate the abortion decision of the pregnant woman from the decision about the use of fetal tissue. The majority held that “fetal tissue from induced abortions should not be used in medical research without

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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the prior consent of the pregnant woman. Her decision to donate fetal remains is sufficient for the use of tissue, unless the father objects (except in cases of incest or rape)” (DHHS/NIH, 1988:60). Critics of this view contended that when the pregnant woman “resolves to destroy her offspring, she has abdicated her office and duty as the guardian of her offspring, and thereby forfeits her tutelary powers ” (Bopp and Burtchaell, 1988:47). From this perspective the abortion decision deprives the pregnant woman of any subsequent authority over the disposition of the fetus. Thus, this viewpoint requires a total separation between the decision to abort and the decision to use or transfer tissue for use; this separation is put into practice by disqualifying the woman who decides to abort from making a decision about fetal tissue use.

Of the several possible modes of transfer of fetal tissue—donation, abandonment, expropriation, or sales—the panel recommended donation, which is the dominant method of transfer of cadaveric organs and tissues in the United States. Donation is carried out mainly in the form of express donation by the decedent or by the decedent's next of kin but also by presumed donation for corneas in several states. “Express donation by the pregnant woman after the abortion decision is the most appropriate mode of transfer of fetal tissue because it is the most congruent with our society's traditions, laws, policies, and practices, including the Uniform Anatomical Gift Act and current Federal research regulations” (DHHS/NIH, 1988:6). (The panel heard some evidence that fetal tissue probably has been viewed at times as abandoned and has been used without maternal consent [DHHS/NIH, 1988:11].) The panel further argued that a woman's choice of a legal abortion does not disqualify her legally and should not disqualify her morally from serving as “the primary decisionmaker about the disposition of fetal remains, including the donation of fetal tissue for research.” Against arguments that the decision to abort leaves only biological kinship, without any moral authority, the panel concluded

that disputes about the morality of her decision to have an abortion should not deprive the woman of the legal authority to dispose of fetal remains. She still has a special connection with the fetus and she has a legitimate interest in its disposition and use. Furthermore, the dead fetus has no interests that the pregnant woman's donation would violate. In the final analysis, any mode of transfer other than maternal donation appears to raise more serious ethical problems. (DHHS/NIH, 1988:6)

A concurring statement (written by John Robertson and signed by a majority of the panelists) disputed the guardianship model affirmed by the Bopp-Burtchaell dissent, contending that it “mistakenly assumes that a person who disposes of cadaveric remains acts as a guardian or

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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proxy for the deceased, who has no interests, rather than as a protector of their own interests in what happens to those remains” (Robertson, 1988:36). (Of course, where the deceased has expressed his or her wishes, then the situation is different.)

Although the panel accepted the structure of the UAGA (revised, 1987) as generally adequate, it recommended a modification in policy for the donation of fetal tissue in federally funded research. The UAGA allows either parent to donate fetal tissue unless the other parent objects. The panel concluded, however, that “the pregnant woman's consent should be necessary for donation—that is, the father should not be able to authorize the donation by himself, and the mother should always be asked before fetal tissue is used. In addition, her consent or donation should be sufficient, except where the procurement team knows of the father's objection to such donation” (DHHS/NIH, 1988:7). Affirming that there is no legal or ethical obligation to seek the father's permission, the panel nevertheless held that there is “a legal and ethical obligation not to use the tissue if it is known that he objects (unless the pregnancy resulted from rape or incest)” (DHHS/NIH, 1988:7). In its recommendations on federal funding of HFTTR, the panel also stressed the importance of compliance with state laws and noted that at least eight states have statutes that prohibit the experimental use of cadaveric fetal tissue from induced abortions (DHHS/NIH, 1988:13; Smith, 1988).

LIMITS ON DISCLOSURE OF INFORMATION AND DECISION MAKING

Several times during its deliberations the panel addressed questions of the disclosure of information, as well as the specificity of the woman's decision to donate. On the one hand, the panel concluded that no information about the donation and use of fetal tissue in research should be provided prior to the pregnant woman's decision to abort, unless she specifically requested that information (DHHS/NIH, 1988:3, 4). Donation, in contrast to informed consent in medicine and research, generally does not presuppose the disclosure of detailed information. Yet, in addition to the requirement of informed consent for the research subject, that is, the recipient of the transplant, the woman having the abortion and donating fetal tissue is herself a research subject insofar as she provides a medical history and undergoes tests relevant to the research transplant. Any research protocol reviewed by the institutional review board (IRB) in a given situation will therefore involve procedures and consent documents that pertain to the woman as a research subject, and the IRB must determine the adequacy of the information disclosed to her when she is considering “whether to consent to tests (e.g., for antibody to the human immunodeficiency virus) to determine the ac-

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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ceptability of the fetal tissue for transplantation research” (DHHS/NIH, 1988:7). Within the model of stages of disclosure of information and decision making about the separate acts of abortion and donation, it is thus necessary to disclose information about tests to determine the acceptability of fetal tissue as part of the research protocol. Other issues include what to disclose to the pregnant woman about the test results.

For various reasons that have already been identified—the desire to separate the abortion decision from the donation decision, the desire to protect pregnant women from exploitation and coercion, and the desire to avoid fanning the flames of the abortion controversy —the panel recognized several limits on the pregnant woman's autonomy without restricting the abortion decision itself. In the UAGA there is no obligation to accept donated tissue and organs; hence, the woman's right to give fetal tissue does not engender an obligation on the part of anyone else to accept the gift. The pregnant woman has a right, the panel argued, to request and receive information about donation of fetal tissue prior to her abortion decision, but that information should not be disclosed to her as a matter of course if she does not request it. Here again, the rationale is to separate the two decisions to reduce the likelihood that knowledge of the possibility of donating will influence the decision to abort. In addition, the panel recommended that “the timing and method of abortion should not be influenced by the potential uses of fetal tissue for transplantation or medical research” (DHHS/NIH, 1988:4). In response to the assistant secretary's questions about potential pressure to modify the timing and method of abortion to secure older fetuses, the panel stressed that, according to the evidence it had received, there were no pressures for later abortions. It further insisted that, “to the extent that Federal sponsorship or funding is involved, no abortion should be put off to a later date nor should any abortion be performed by an alternate method entailing greater risk to the pregnant woman in order to supply more useful fetal materials for research” (DHHS/NIH, 1988:14).

Stressing the express donation model embodied in the UAGA, the panel 's recommendations would allow the pregnant woman to choose whether to donate fetal tissue for research or some other purpose and to receive as much information as she needed regarding donation after she had decided to abort, without allowing her to know or to designate the recipient. By contrast, the 1989 report of Britain's Committee to Review the Guidance on the Research Use of Fetuses and Fetal Material (the so-called Polkinghorne report) recommended indeterminate donation to the extent of providing “no knowledge of what will actually happen to the fetus or fetal tissue”—to make it even less likely that the possibility of beneficial use of tissue will influence the woman 's deci-

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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sion to have an abortion—and not allowing her “to make any direction regarding the use of her fetus or fetal tissue ” (p. 10). Reflecting differences in sociocultural context, the British report does not emphasize the disclosure of information to the pregnant woman to the same extent as the U.S. panel report does. Similarly, the U.S. panel recommended the disclosure of the source of the tissue —that is, that it came from a fetus or fetuses provided by induced abortion—so that the potential recipient of the transplant could choose not to participate; the British report recommended against such disclosure. However, both reports recommended disclosure of information about the tissue source to health care professionals.

OTHER ISSUES AND RECOMMENDATIONS

A few other issues and panel recommendations merit attention before we turn to other developments, including recent public policy responses. The panel insisted on procedures that would accord dead human fetuses “the same respect accorded other cadaveric human tissues entitled to respect” (DHHS/NIH, 1988:1).

Although the panel did not discuss the implications of this recommendation, the principle entails that the dead human fetus not be subjected to procedures that are undignified or that show disrespect toward “cadaveric human tissue.” This position does not presuppose that the fetus is a full human being; instead it may rest on other convictions—for example, that the fetus is a potential human being and has symbolic significance even when dead, or that respect for human fetal tissue is appropriate to avoid offending those who view the fetus as a full or potential human being. At any rate, the principle of equal respect implies that if it is justifiable to use any “cadaveric human tissue” in transplantation research —for example, after accidents or homicides—then it is justifiable to use cadaveric fetal tissue after abortions.

Throughout its deliberations the panel recommended institutional procedures and arrangements to avoid conflicts of interest, that is, situations in which parties might have some incentive to encourage pregnant women to abort to provide fetal tissue. The panel concluded that concerns about the impact of the use of fetal tissue on the practices of abortion clinics could be “best addressed by strict adoption of a number of safeguards; safeguards that would eliminate or at least radically reduce profit motives and tendencies toward commercialization, and safeguards that would ensure the greatest possible separation between abortion procedures, facilities, and personnel on the one hand, and fetal-tissue research procedures, facilities and personnel on the other” (DHHS/NIH, 1988:10). These safeguards included the insistence, in

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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accord with current federal law and many state laws, that no fees be paid to the abortion clinic “for its efforts in procuring fetal tissue (other than expenses incurred in retrieving fetal tissue) ” (DHHS/NIH, 1988:9; see also p. 10); in addition, however, the panel recognized that, in order “to prevent abortion clinics from making profits from fetal tissue donation, specific rules for what counts as a reasonable payment for retrieval expenses may be required” (DHHS/NIH, 1988:12). In accord with the spirit of the panel, other commentators have recommended additional precautions to separate the practices; for example, Annas and Elias (1989) argue that “to avoid any conflict of interest there should be no academic incentive (such as co-authorship of publications or grant support) or other incentive for the physician performing the abortion or anyone else involved in the woman's care, to obtain her agreement for the use of fetal tissue.”

Another major set of issues centers on the justification of human fetal tissue transplantation research, particularly from the standpoint of potential recipients. According to federal regulations and common practice, ethically justified research must satisfy several criteria, including favorable benefit-risk ratios (Levine, 1986). Such benefit-risk analyses presuppose careful laboratory and animal studies before research involving human subjects can be justified. In response to Assistant Secretary Windom's question about whether animal studies justify HFTTR for certain diseases, the panel concluded that “there is sufficient evidence from animal experimentation to justify proceeding with human clinical trials in Parkinson's disease and juvenile diabetes,” but not enough evidence from animal studies to justify proceeding with HFTTR for other diseases (DHHS/NIH, 1988:14; see also pp. 19-20). The panel did not have the research protocol that had been submitted to NIH and thus did not approve or disapprove a specific research protocol as a peer review process or institutional review board would have done.

OTHER DEVELOPMENTS AND PUBLIC POLICY RESPONSES

This case study has focused on the deliberations and recommendations of the HFTTR panel. The panel's report was submitted to the Director 's Advisory Committee of NIH on December 14, 1988, with oral presentations by nine of the ten panel members who attended (another absent panel member's statement was entered into the record). The report of the Director's Advisory Committee, Human Fetal Tissue Transplantation Research (December 14, 1988), notes that the advisory committee members and NIH council representatives quickly concluded that the panel's report was “an impressive and skillfully crafted

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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document” that reflected “extensive and thoughtful work.” “[G]iven the divisiveness underlying our society on the issues related to the topic under consideration, the report represented a remarkable consensus” (Advisory Committee to the Director, NIH, 1988:4). After reviewing and discussing the panel's report, the advisory committee unanimously approved three recommendations:

  • to accept the report and the recommendations of the panel as written;

  • to recommend that the assistant secretary for health lift the moratorium on federal funding of human fetal tissue transplantation research utilizing tissue from induced abortions; and

  • to accept current laws and regulations governing human fetal tissue research with the development of additional policy guidance as appropriate, to be prepared by NIH staff to implement the recommendations of the panel (Advisory Committee to the Director, NIH, 1988).

The panel's report and the advisory committee's report were not forwarded to DHHS until January 1989, just before the end of the Reagan administration, which took no action on the reports. After President Bush's inauguration, controversy developed over his nominee for secretary of health and human services, in part because of concerns about his stand on abortion and related issues, including HFTTR. Hearings on Louis Sullivan's nomination included attention to these matters, and during the hearings Sullivan commented that he had not read the two reports an HFTTR and could not respond until he had done so (Rich, 1989; Tolchin, 1989). The reports were not released to the public until April 1989.

Then, on November 2, 1989, in a letter to acting NIH director William F. Raub, Secretary Sullivan informed NIH of his decision to continue indefinitely “the moratorium on Federal funding of research in which human fetal tissue from induced abortions is transplanted into human recipients.” Stressing his office's discretion in the matter, as well as the extensive review and public discussion, he identified several substantive considerations. First, the administration and Congress had made it clear that DHHS should not fund activities that encouraged or promoted abortion, and Sullivan was persuaded that “permitting the human fetal research at issue will increase the incidence of abortion across the country. ” He continued: “I am particularly convinced by those who point out that most women arrive at the abortion decision after much soul searching and uncertainty. Providing the additional rationalization of directly advancing the cause of human therapeutics cannot help but tilt some already vulnerable women toward a decision to have an abortion.” In support of his position he notes that 18 of the

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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21 members of the panel agreed to begin their report with the statement that “[i]t is of moral relevance that human fetal tissue has been obtained from induced abortions.” However, he did not examine the different meanings this statement about “moral relevance” had to the different panelists or consider the significance of the fact that the three dissenters from this part of the report were also opposed to HFTTR and dissented from the report as a whole.

Second, Secretary Sullivan doubted that the desired “strict wall” between the abortion decision and the donation decision could be erected, however clear it might be in theory, because it “may be necessary to consult pregnant women before the abortion is actually performed” to be able to utilize postmortem tissue promptly. This consultation could influence the woman's decision making process.

Third, Sullivan noted that if the research proved successful, there would be a demand for more fetal tissue. He seemed to suggest that there would be a subsequent demand for more abortions, but did not address the question of whether the current rate of abortions would be sufficient to provide the needed tissue.

Finally, he noted that HFTTR can be continued in the private sector to generate “whatever biomedical knowledge” might emerge. There has been some privately funded HFTTR—for example, during fall 1988, at the University of Colorado and Yale University, and it continues there and perhaps elsewhere in the United States as well as abroad; yet some people express the fear that without federal funding the field will not grow rapidly or attract the best researchers. In addition, Sullivan's acceptance of private HFTTR did not address the concern expressed by Judge Arlin Adams, chairman of the HFTTR panel, who opposes abortion except in very limited situations:

Without government funding there undoubtedly would be many efforts to use fetal tissue for medical research that would be completely unsupervised and not governed by any guidelines. Thus if the National Institutes of Health proceeds cautiously, and with carefully articulated safeguards and a program of periodic reviews, there would be much greater assurance that carefully crafted guidelines will be in place as an absolute condition to any research procedures. Such an arrangement would protect pregnant women and fetuses in a far more circumspect and intelligent manner than if the NIH did not participate in any way. (Adams, 1988:26-27)

James Mason, assistant secretary for health, reiterated and further amplified the views of DHHS, as expressed by Secretary Sullivan. In particular, he averred that “if just one additional fetus were lost because of the allure of directly benefiting another life by the donation of fetal tissue, our department would still be against federal funding.

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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However few or many more abortions result from this type of research cannot be erased or outweighed by the potential benefit of this research ” (Mason, 1990:17). He stressed moral and ethical factors (mainly having to do with abortion) that had to be weighed with the potential benefits of the research and called for a common effort to “find alternatives to fetal tissue transplantation” and “explore other research paths that lead us to the same ends.” After the announcement of the indefinite extension of the moratorium, some abortion opponents indicated that they would apply pressure to eliminate not only transplantation research but all federally funded research involving human fetal tissue (Kolata, 1989).

In view of the subsequent disregard by Secretary Sullivan of the panel's conclusions, some panelists have indicated that they should have pressed for stronger language—for example, in contending that HFTTR is not only “acceptable public policy” but also “ethically acceptable”—because the numerous efforts to find compromise language to gain the support of more panelists left the report vulnerable at points and subject to neglect, misuse, and misquotation. To take one instance, Assistant Secretary Mason claimed that the majority of the panelists indicated that “moral and ethical considerations were not central to their view of the issue” (Mason, 1990:17). Yet rather than denying the centrality of “moral and ethical considerations, ” the panelists in the majority arguably had a different view of the dictates of morality and ethics and offered a different balance of such considerations.

Critics have sharply challenged DHHS's indefinite extension of the moratorium. Thirty-two medical research and education organizations, including the American Medical Association, the Association of American Medical Colleges, and the American Academy of Pediatrics, wrote Secretary Sullivan on January 4, 1990: “It is clear to us that the potential for good to result from this research outweighs the concerns about the impact on the abortion rate in this country, concerns that are at best speculative. Continuing the moratorium ignores the suffering of millions of Americans” (Hilts, 1990). After reviewing some documents and requesting others, Congressman Ted Weiss (D-N.Y.) contends that DHHS has offered no documentation that HFTTR would increase the number of abortions. In addition, he notes, even a member of DHHS's Office of General Counsel conceded that an extension of the ban would have a “shaky legal base” unless it was made permanent in the proper way through public notice with public comment and then by establishing a rule (Hilts, 1990). “The so-called indefinite moratorium,” Congressman Weiss continues, “is a thinly veiled scheme to ban Federal funds for fetal tissue transplant research while avoiding the public outrage and scientific and legal scrutiny that would result from establishing a per-

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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manent ban. I am hopeful Secretary Sullivan will be able to get beyond these abortion litmus tests to promote the crucial research that could be saving the lives of thousands of seriously ill Americans ” (Hilts, 1990).

Similar themes emerged in the April 2, 1990, hearings on human fetal tissue research before the House Subcommittee on Health and the Environment of the Committee on Energy and Commerce, chaired by Congressman Henry Waxman. Following testimony from several members of the HFTTR panel, as well as by the assistant secretary for health, bioethicist John Fletcher accused the federal government of “moral recklessness” in the suppression and repression of several forms of research relating to the fetus and the embryo. He also noted the oddity of DHHS officials maintaining that it would be wrong for the federal government to fund HFTTR without condemning (and even apparently accepting) HFTTR funded through private sources.

CONCLUSION

In light of recent reports of the success of HFTTR for a Swedish (Lindvall, 1990) and a U.S. (Freed, 1990) patient with Parkinson 's disease, the debate about the moral justifiability of the moratorium can be expected to continue. One former panelist, LeRoy Walters, has noted that the position taken by the panel, in contrast to the moratorium by DHHS, is in accord with the international ethical consensus on HFTTR using tissue from electively aborted fetuses. He observes that the recommendations of various committees or deliberative bodies around the world, which numbered at least nine by December 1988 and have been increased by several others since then, display “remarkable similarities.” In fact, Walters says, there is “an impressive international consensus on the ethical standards that should govern the use of fetal tissue for research. The positions adopted in the panel's report are located squarely in the middle of this international consensus” (Walters, 1988; see also his testimony on April 2, 1990, before the Subcommittee on Health and the Environment). While conceding that there is no guarantee that such an international consensus is itself “ethically correct, ” Walters stresses that “we are less likely to make a serious moral mistake when numerous groups of conscientious men and women from around the world have sought to study the issue with great care and have reached virtually identical conclusions about appropriate public policy” (Walters, 1988). Within the United States, similar proposals, with minor variations, have emerged in the last two years from such groups as the Stanford University Medical Center Committee on Ethics (Greely et al., 1989) and the Councils on Scientific Affairs and on Ethical and Judicial Affairs of the American Medical Association (1990).

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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This case study has offered in passing several comparisons with other reports and actual or proposed policies in other countries, particularly the proposals of the Polkinghorne Committee in the United Kingdom in 1989. Several distinctive features of the social-political-cultural context in each nation account for differences in specific guidelines even within a strong international consensus on ethical standards. Obviously one major difference is the political strength of various groups that press certain moral visions or interests, such as the right-to-life movement in the United States. In addition, some concerns about HFTTR may be particularly appropriate in the United States because of special factors. First, many European countries have abortion laws that are more restrictive than those of the United States and thus may have less reason to fear the impact of HFTTR on abortion decision making and on the societal acceptance of abortion (Clendon, 1989). Second, there may be important differences in the commercialization and regulation of abortion clinics and of tissue procurement. For example, it could be argued that the HFTTR panel in the United States did not pay sufficient attention to actual institutional pressures (Annas and Elias, 1989), whereas the Polkinghorne report, which also recommended the separation of decisions regarding abortion and the use of fetal tissue, called for an intermediary as a mechanism of separation of the practice of abortion and the use of fetal tissue. (If there were more than one tissue bank, they would all function under a single intermediary organization.)

Sociocultural differences may lead to such variations in guidelines and approaches, even within a strong international consensus about the relevant ethical standards. One important question in the United States is whether, as some critics claim, public policy regarding HFTTR is being held hostage to the society's uneasiness about abortion, or whether the recommendations of the HFTTR panel or similar recommendations will be found to reflect an acceptable balance of ethical concern for fetuses, prior to and after their deaths; for pregnant women; for professionals and researchers; for patients who lack effective therapies and are potential beneficiaries of HFTTR; and for social integrity, including the democratic process. The debate is in part about how to proceed in a situation of doubt; thus, it also becomes a question of which side has the burden of proof when there is a lack of irrefutable evidence that it is possible to separate abortion decisions and practices sufficiently from decisions and practices regarding the use of fetal tissue following abortions. Because of the lack of irrefutable evidence, the panel recommended that the secretary of health and human services review the proposed guidelines at appropriate intervals. As of this writing, the moratorium continues to be defended by the secretary, and

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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Congress is considering legislation that would require a lifting of the ban. There is no doubt that this issue will continue to be argued on moral, ethical, legal, political, and medical grounds for some time.

EDITOR'S NOTE: A bill (H.R. 5661) that would lift the ban on federally approved fetal tissue transplantation research failed passage near the end of the 101st Congress. In January 1991, the American College of Obstetrics and Gynecology and the American Fertility Society announced they will form a national advisory board to monitor embryo and fetal tissue research in the absence of federal guidelines.

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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APPENDIX A

Appendix A is a March 1988 memorandum from the assistant secretary for health to the director of the National Institutes of Health. The memo lists 10 questions that should be addressed by a Human Fetal Tissue Transplantation Research Panel, once it is appointed and convened.

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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DEPARTMENT OF HEALTH & HUMAN SERVICES

Public Health Service

National Institutes of Health

Memorandum

Date MAR 22 1988

From Assistant Secretary for Health

Subject Fetal Tissues in Research

To Director, National Institutes of Health

I have given careful thought to your request to perform an experiment calling for the implantation of human neural tissue from induced abortions into Parkinson's patients to ameliorate the symptoms of this disorder.

This proposal raises a number of questions--primarily ethical and legal--that have not been satisfactorily addressed, either within the Public Health Service or within society at large. Consequently, before making a decision on your proposal, I would like you to convene one or more special outside advisory committees that would examine comprehensively the use of human fetal tissue from induced abortions for transplantation and advise us on whether this kind of research should be performed, and, if so, under what circumstances.

Among other questions, I would like the advisory committee(s) to address the following:

  1. Is an induced abortion of moral relevance to the decision to use human fetal tissue for research? Would the answer to this question provide any insight on whether and how this research should proceed?

  2. Does the use of the fetal tissue in research encourage women to have an abortion that they might otherwise not undertake? If so, are there ways to minimize such encouragement?

  3. As a legal matter, does the very process of obtaining informed consent from the pregnant woman constitute a prohibited “inducement” to terminate the pregnancy for the purposes of the research--thus precluding research of this sort, under HHS regulations?

  4. Is maternal consent a sufficient condition for the use of the tissue, or should additional consent be obtained? If so, what should be the substance and who should be the source(s) of the consent, and what procedures should be implemented to obtain it?

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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  1. Should there be and could there be a prohibition on the donation of fetal tissue between family members, or friends and acquaintances? Would a prohibition on donation between family members jeopardize the likelihood of clinical success?

  2. If transplantation using fetal tissue from induced abortions becomes more common, what impact is likely to occur on activities and procedures employed by abortion clinics? In particular, is the optimal or safest way to perform an abortion likely to be in conflict with preservation of the fetal tissue? Is there any way to ensure that induced abortions are not intentionally delayed in order to have a second trimester fetus for research and transplantation?

  3. What actual steps are involved in procuring the tissue from the source to the researcher? Are there any payments involved? What types of payments in this situation, if any, would fall inside or outside the scope of the Hyde Amendment?

  4. According to HHS regulations, research on dead fetuses must be conducted in compliance with State and local laws. A few States' enacted version of the Uniform Anatomical Gift Act contains restrictions on the research applications of dead fetal tissue after an induced abortion. In those States, do these restrictions apply to therapeutic transplantation of dead fetal tissue after an induced abortion? If so, what are the consequences for NIH-funded researchers in those States?

  5. For those diseases for which transplantation using fetal tissue has been proposed, have enough animal studies been performed to justify proceeding to human transplants? Because induced abortions during the first trimester are less risky to the woman, have there been enough animal studies for each of those diseases to justify the reliance on the equivalent of the second trimester human fetus?

  6. What is the likelihood that transplantation using fetal cell cultures will be successful? Will this obviate the need for fresh fetal tissue? In what time-frame might this occur?

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
×

Based on the findings and recommendations of the advisory committee(s), I would like you to reconsider whether you would like to proceed with this kind of research, and, if so, whether you wish to make any changes, regulatory or otherwise, in your research review and implementation procedures for both extramural and intramural programs.

Pending the outcome of the advisory committee(s)' assessment and your subsequent review, I am withholding my approval of the proposed experiment, and future experiments, in which there is performed transplantation of human tissue from induced abortions. You will note that this does not include research using fetal tissues from spontaneous abortions or stillbirths. However, I would like the special advisory committee(s) to consider whether current research procedures are adequate for the appropriate ethical, legal and scientific use of tissue from these other sources.

I believe that greater input from outside professionals and also from the public will enhance protections for research participants and will help assure greater public confidence in our work.

Robert E. Windom, M.D.

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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APPENDIX B

Human Fetal Tissue Transplantation Research Panel

Arlin M. Adams (Chair), Schnader, Harrison, Segal & Lewis, Philadelphia, Pennsylvania

Kenneth J. Ryan (Chair, Scientific Issues), Chairman, Department of Obstetrics & Gynecology, Brigham and Women's Hospital, Boston, Massachusetts

LeRoy Walters (Chair, Ethical and Legal Issues), Director, Center for Bioethics, Kennedy Institute of Ethics, Georgetown University, Washington, D.C.

J. David Bleich, Professor of Law, Cardozo Law School, New York, New York

James Bopp, Jr., Brames, McCormick, Bopp, and Abel, Terre Haute, Indiana

James T. Burtchaell, Professor of Theology, Department of Theology, University of Notre Dame, Notre Dame, Indiana

Robert C. Cefalo, University of North Carolina School of Medicine, Chapel Hill, North Carolina

James F. Childress, Chairman, Department of Religious Studies, University of Virginia, Charlottesville, Virginia

K. Danner Clouser, Professor, Hershey Medical Center, Pennsylvania State University, Hershey, Pennsylvania

Dale Cowan, Hematologist/Oncologist, Marymount Hospital, Garfield Heights, Ohio

Jane L. Delgado, President and Chief Executive Officer, National Coalition of Hispanic and Human Services Organizations, Washington, D.C.

Bernadine Healy, Chairman, Research Institute, Cleveland Clinic Foundation, Cleveland, Ohio

Dorothy I. Height, President, National Council of Negro Women, Alexandria, Virginia

Barry J. Hoffer, Professor of Pharmacology, Department of Pharmacology, University of Colorado, Denver, Colorado

Patricia A. King, Professor of Law, Georgetown University Law Center, Washington, D.C.

Paul Lacy, Professor of Pathology, Washington University School of Medicine, St. Louis, Missouri

Joseph B. Martin, Chief, Neurology Service, Massachusetts General Hospital, Boston, Massachusetts

Aron A. Moscona, Professor, Department of Molecular Genetics and Cell Biology, University of Chicago, Chicago, Illinois

John A. Robertson, Baker & Botts Professor of Law, University of Texas School of Law, Austin, Texas

Daniel N. Robinson, Chair, Department of Psychology, Georgetown University, Washington, D.C.

Charles Swezey, Annie Scales Professor of Christian Ethics, Union Theological Seminary, Richmond, Virginia

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
×

REFERENCES

Adams, A. B. 1988. Concurring statement. Pp. 25-28 in Report of the Human Fetal Tissue Transplantation Research Panel, vol. 1 (December). Bethesda, Md.: Department of Health and Human Services/National Institutes of Health

Advisory Committee to the Director, National Institutes of Health 1988. Human Fetal Tissue Transplantation Research. Bethesda, Md., December 14, 1988.

Annas, G. J., and S. Elias. 1989. The politics of transplantation of human fetal tissue. New England Journal of Medicine 320 (April 20):1079-1082.

Bleich, J. D. 1988. Fetal tissue research and public policy (dissenting statement). Pp. 39-43 in Report of the Human Fetal Tissue Transplantation Research Panel, vol. 1 (December). Bethesda, Md.: Department of Health and Human Services, National Institutes of Health

Bopp, J., and J. T. Burtchaell. 1988. Human fetal tissue transplantation research panel: Statement of dissent Pp. 45-71 in Report of the Human Fetal Tissue Transplantation Research Panel, vol. 1 (December). Bethesda, Md.: Department of Health and Human Services, National Institutes of Health

Clendon, M. A. 1989. A world without Roe: How different would it be? Hastings Center Report 19 (July-August):22-37.

Committee to Review the Guidance on the Research Use of Fetuses and Fetal Material. 1989. Review of the Guidance on the Research Use of Fetuses and Fetal Material London: Her Majesty's Stationery Office.

Councils on Scientific Affairs and on Ethical and Judicial Affairs 1990. Medical applications of fetal tissue transplantation. Journal of the American Medical Association 263 (January 26):565-570.

Department of Health and Human Services/National Institutes of Health 1988. Report of the Human Fetal Tissue Transplantation Research Panel. Bethesda, Md.: National Institutes of Health, vol. 2, December 1988.

Fox, J. 1988. Overview of panel meetings. Appendix A in Report of the Human Fetal Tissue Transplantation Research Panel, vol. 2 (December). Bethesda, Md.: Department of Health and Human Services, National Institutes of Health

Freed, C. 1990. Transplantation of human fetal dopamine cells for Parkinson's disease. Archives of Neurology 47 (May):505-512.

Greely, H. T., T. Hamm, R. Johnson, C. R. Price, R. Weingarten, and T. Raffin. 1989. The ethical use of human fetal tissue in medicine. New England Journal of Medicine 320 (April 20):1093-1096.

Hilts, P. J. 1990. U.S. aides see shaky legal basis for ban on fetal tissue research New York Times, January 30, 1990

Kolata, G. 1989. More U.S. curbs urged in the use of fetal tissue. New York Times, November 19, 1989, pp. 1, 38.

Levine, R. J. 1986. Ethics and Regulation of Clinical Research, 2nd ed. Baltimore, Md.: Urban and Schwarzenberg.

Lindvall, O. 1990. Grafts of fetal dopamine neurons survive and improve motor function in Parkinson's disease. Science 247 (February 2):574-577.

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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sMason, J. O. 1990. Should the fetal tissue research ban be lifted? Journal of NIH Research 2 (January-February):17-18.

Moscona, A. A. 1988. Concurring statement. Pp. 27-28 in Report of the Human Fetal Tissue Transplantation Research Panel, vol. 1 (December). Bethesda, Md.: Department of Health and Human Services, National Institutes of Health

Nolan, K. 1988. Genug ist genug: A fetus is not a kidney. Hastings Center Report 18 (December):13-19.

Office of Science Policy and Legislation, Office of the Director, National Institutes of Health. 1988. Fact sheet: NIH fetal tissue research. Bethesda, Md.: Department of Health and Human Services, National Institutes of Health July 22, 1988.

Rich, S. 1989. Senate panel recommends Sullivan for HHS. Washington Post, February 24, 1989, A4.

Robertson, J. A. 1988. Concurring statement. Pp. 29-43 in Report of the Human Fetal Tissue Transplantation Research Panel, vol. 1 (December). Bethesda, Md.: National Institutes of Health.

Robinson, D. N. 1988. Letter to Dr. Jay Moskowitz. P. 73 in Report of the Human Fetal Tissue Transplantation Research Panel, vol. 1 (December). Bethesda, Md.: National Institutes of Health.

Smith, D. H. [Poynter Center]. 1988. Using human fetal tissue for transplantation and research selected issues. Appendix F in Report of the Human Fetal Tissue Transplantation Research Panel, vol. 2 (December). Bethesda, Md.: National Institutes of Health.

Tolchin, M. 1989. Bush choice backed for health chief after an apology. New York Times, February 24, 1989, A1 and A13.

Vawter, D. E. 1990. The use of human fetal tissue: Scientific, ethical, and policy concerns A report of phase 1 of an interdisciplinary research project conducted by the Center for Biomedical Ethics, University of Minnesota, January 1990.

Walters, L. 1988. Statement. In Human Fetal Tissue Transplantation Research, Advisory Committee to the Director. Bethesda, Md.: National Institutes of Health, December 14, 1988.

ADDITIONAL BIBLIOGRAPHY

Burtchaell, J. T. 1988. University policy on experimental use of aborted fetal tissue. IRB: A Review of Human Subjects Research 10 (July-August):7-11.

Burtchaell, J. T. 1989. The use of aborted fetal tissue in research: A rebuttal. IRB: A Review of Human Subjects Research 11 (March-April):9-12.

Cefalo, R. C., and H. T. Engelhardt, Jr. 1989. The use of fetal and anencephalic tissue for transplantation. Journal of Medicine and Philosophy 14 (February):25-43.

Fine, A. 1988. The ethics of fetal tissue transplants. Hastings Center Report 18 (June-July):5-8.

Forum: Neural fetal tissue transplantation scientific, legal, and ethical aspects. 1988. Clinical Research 36:187-222.

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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Freedman, B. 1988. The ethics of using human fetal tissue. IRB: A Review of Human Subjects Research 10 (November-December):1-4.

Hansen, J. T., and J. R. Sladek, Jr. 1989. Fetal research. Science 246 (November 10):775-779.

Lafferty, K. J. 1990. Should the fetal tissue research ban be lifted? Journal of NIH Research 2 (January-February):16, 18.

Landau, W. M. 1990. Artificial intelligence: The brain transplant cure for Parkinsonism Neurology 40:733-740.

Levine, R. J. 1989. An IRB-approved protocol on the use of human fetal tissue. IRB: A Review of Human Subjects Research 11 (March-April):7-12.

Mahowald, M. B., J. Silver, and R. A. Ratcheson. 1987. The ethical options in transplanting fetal tissue. Hastings Center Report 17 (February):9-15.

McCullagh, P. 1987. The Foetus as Transplant Donor. New York: John Wiley & Sons.

Miller, R. B. 1989. On transplanting human fetal tissue: Presumptive duties and the task of casuistry. Journal of Medicine and Philosophy 14:617-640.

Robertson, J. 1988. Fetal tissue transplant research is ethical. IRB: A Review of Human Subjects Research 10 (November-December):5-8.

Robertson, J. 1988. Rights, symbolism, and public policy in fetal tissue transplants. Hastings Center Report 18 (December):5-12.

Sparks, R. C. 1990. Ethical issues of fetal tissue transplantation: Research, procurement, and complicity with abortion. Paper presented at the annual meeting of the Society for Christian Ethics, Arlington, Va., January 20.

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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Commentary

Patricia A. King

Since the early 1970s, complex ethical, social, legal, and scientific controversies generated by scientific and medical advances have been referred increasingly to national commissions, committees, boards, or panels. The case study of the HFTTR panel 1 underscores the need to assess in a systematic way the goals, structure, and processes of such bodies if they are to continue to successfully resolve significant questions posed by the biomedical sciences. This need is particularly acute with respect to the consensus style that has been the hallmark of these groups.

Although the efforts of these groups have sometimes been described as “doing ethics,” 2 it would be more accurate to characterize their activities as developing public policies in the tradition of courts, legislatures, and regulatory agencies. These bodies have been so successful that thoughtful observers such as LeRoy Walters, director of bioethics at Georgetown University 's Kennedy Institute of Ethics, have concluded that, although these groups “are not likely to replace the work of legislators, government agencies, and the courts, periodic committee statements and reports may become the preferred mode of public oversight and social control for at least certain areas of biology and medicine.” 3 The perceived success of these bodies can be attributed to many factors. I believe that three considerations deserve special note.

Patricia A. King is professor of law at Georgetown University Law Center and was a member of the HFTTR panel.

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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First, the issues posed for these policymaking bodies involve complex social dilemmas that appear to require more flexible and more extensive analysis than that permitted by the institutional restraints placed on courts, legislatures, and regulatory agencies. Typically, these issues are highly controverted and often seem incapable of resolution. While creation of these bodies may allow legislatures and agencies to avoid or defer acting on a difficult matter, 4 many issues are amenable to thoughtful resolution by these interdisciplinary groups. For many controversies, extensive, detailed consideration may be necessary before effective guides for action can be established, especially when existing principles and methods of analysis are inadequate to the task. Indeed, fundamental concepts and ways of thinking may first need to be reexamined.

Second, despite the seemingly intractable nature of the issues, the members of these bodies in many instances have been able to reach consensus on their advice or recommendations. This ability to bring order out of chaos gives their reports a compelling quality that facilitates their incorporation into relevant areas of law and public policy.

Third, these bodies have explicitly and self-consciously incorporated ethical premises into their deliberations. Their membership or staff (or both) often includes ethicists, philosophers, and theologians. These individuals articulate perspectives that are not ordinarily associated with policy development but that are essential to resolution of these complex issues.5 The inclusion of ethical premises makes clear that the issues under scrutiny are not solely medical or technical in nature and require more than technical expertise to resolve. Success in including ethical premises, however, has obscured the fact that a range of perspectives —social, political, and economic, to name a few—is required for full resolution of these issues.

Successful inclusion of ethical premises has also tended to foster the illusion that these bodies have achieved consensus at the level of ethical principle or even ethical analysis. In fact, the consensus usually comes at the level of practice and policy. Moreover, it is not clear whether an effort to reach consensus at the level of principle is either possible or desirable. As Alexander Morgan Capron pointed out in connection with the work of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, “[t]he issues presented by modern medicine and research involve too many of the central facets of human existence to be summed up by a few simple principles.” 6

Clearly, however, ethical principles and concepts are incorporated in the work of these groups, both as a part of a detailed analysis of the dilemmas under scrutiny and as a mechanism to facilitate the acceptance of the bodies' conclusions by persons with diverse religious, cultural, and ethical views. Stephen Toulmin summarizes the utility of appeal to principle in this way: “Principles serve less as foundations, adding intellectual strength or force

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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to particular moral opinions, than they do as corridors or curtain walls linking the moral perceptions of all reflective human beings, with other, more general positions—theological, philosophical, ideological, or Weltanschaulich.7

The HFTTR panel was created and operated in the tradition of these preexisting national bodies with certain critical differences noted in the case study (staffing, timing, etc.). Significantly, the panel reached consensus on its responses to the questions presented to it. Nevertheless, the careful procedural and substantive examination of the HFTTR panel's operation presented in the case study makes clear that the panel's creation and work, as well as the operation of other such national bodies, need thoughtful scholarly analysis before they can become “the preferred mode of public oversight.” At least two questions posed by the panel 's work require critical examination.

The first involves the nature and importance of achieving consensus, especially in a context that touches on abortion. Weisbard and Arras put the problem succinctly when they ask: “[W]hat does ‘consensus' or ‘unanimity' signify, when it is achieved on deeply controversial questions in a society as pluralistic as our own?” 8 Unlike courts, legislators, and regulatory agencies, national bodies like the HFTTR panel have no means to enforce their conclusions or recommendations but instead depend on persuasion for impact. The force of their conclusions seems to depend on whether the body was able to reach consensus. Morris Abram, chairman of the President 's Commission, makes this point powerfully, stating that “a commission requires agreement that is as close to unanimity as possible, to have any effect at all. Without such virtual unanimity, the commission members simply voice powerful arguments; with it, the commission can persuade.” 9

As the case study notes, the drive to achieve consensus was central to the HFTTR panel's work, and, indeed, consensus was achieved. Yet I believe that ultimately the product is not particularly persuasive. The fact that the panel's recommendations were not adopted by the Department of Health and Human Services is not the test of their persuasiveness. Rather, a clue lies in the fact that James Childress 's discussion of the panel's deliberations in the case study is more coherent and consistent than that of the panel. I believe the HFTTR panel report lacks persuasive import because it failed to make clear how persons holding radically different views about abortion could nonetheless agree that the use of fetal tissue from induced abortion is “acceptable public policy ” under specified conditions. It was probably necessary to describe the process that resulted in acceptance of this point rather than merely stating it.

In part, the HFTTR panel's failure to explain its conclusions adequately can be attributed to some of the events described in the case study, especially to the fact that the majority initially developed responses and not justifications for its conclusions. Yet I believe there is a deeper problem lurking here. Perhaps in the drive to achieve consensus, the panel gave insufficient atten-

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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tion to diverse views, to raising new questions, to stimulating debate, and to furthering societal discussion of controversial matters. Perhaps consensus was achieved at the expense of other functions that these national bodies ought to perform.10 I suggest that one such function would be to reexamine traditional societal values in relation to a given modern dilemma to determine their present-day usefulness. A national group should draw on a variety of sources about norms, methodologies, and culturally informed perspectives in these deliberations. In so doing, it could develop new or revised analytical frameworks within which to examine contemporary issues. If the HFTTR panel had been permitted to engage in this type of effort, its conclusions might ultimately have been more persuasive.11 They surely would have been more coherent.

In part, the panel's failure to develop new or revised analytical frameworks is related to its mandate. That point brings me to the second issue that needs critical examination, namely, the nature and structure of the mandate and the mandate's impact on the character of group deliberations. Every good lawyer (and teacher) knows the importance of formulating the right questions because in part the form of the question has implications for the nature of the answer. The HFTTR panel's mandate was in the form of 10 questions it had to answer. As discussed in the case study, these questions focused the group's attention on the connection between fetal tissue transplantation research and abortion.

Let us consider, for a moment, what product might have resulted if the question had been something like the following: Under what circumstances, if any, should the federal government support human fetal tissue transplantation research? Several possibilities come to mind. First, the HFTTR panel might have articulated new or revised analytical frameworks that would have helped clarify how persons holding different perspectives could reach consensus at the level of policy recommendations. For example, a person who held that the fetus was mere tissue and a person who held that the fetus was a person might be able to agree that the woman should give consent to the tissue donation. The first person might reach this conclusion because the woman was giving consent to use of her bodily tissue. The other might conclude that the next-of-kin should always give consent to the use of tissue from cadavers where wishes were unknown and where the purpose of the consent was not to further the best interests of the fetus.

Second, a more neutrally constructed question that resulted in the articulation of a new or revised analytical framework might have helped clarify the relationship between ethical analysis and policy development. It is not sufficient to ask whether a proposed practice is ethical. There is no necessary symmetry between ethics and public policy. As was evident in the HFTTR panel's work, it is possible to contend that abortion is morally wrong without also contending that the law should prohibit abortion or the use of

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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fetal tissue from abortion in research. Moreover, it is possible to consider an act morally acceptable without concluding that it ought to be legal. Ultimately, ethical principles and ethical analysis may be too abstract to provide sufficiently specific guidance for conduct. There are many other considerations that must be taken into account, such as efficiency, cultural pluralism, public sensibilities, and uncertainty about risk, before policies can be developed.

If the relationship between ethical analysis and public policy formulation had been better understood, reviewers of the report might have appreciated some of the points about cost-benefit analysis that were made in John Robertson's concurring statement. Moreover, if members of the panel had focused their attention on policy judgments as well as ethical analysis, we might have paid closer attention to such factors as the scientific basis for fetal tissue transplantation research.

Finally, a new or revised analytical framework might have helped the panel avoid undue reliance on precedents with their accompanying arguments, stereotypes, and biases. I was often frustrated in the course of the HFTTR deliberations by what I perceived to be an antifemale bias, particularly during the discussions about whether fetal tissue transplantation research would encourage abortion and maternal consent. In my view, stereotypes originating in the abortion discussion obscured the need to better understand the implications of the linkage between the pregnant woman and the fetus in contexts that did not involve abortion directly.

There are many other issues associated with the efforts of national bodies that need critical attention.12 In view of the untimely demise of the congressionally created Bioethics Board and the Biomedical Ethics Advisory Committee, which the Bioethics Board established, 13 in part over the abortion controversy, undertaking a critical assessment of the structure and processes of these national bodies assumes new urgency. The case study on the deliberations of the HFTTR panel is an important step in this assessment.

NOTES

1. I served as a member of the HFTTR panel. My observations are a product of that experience as well as service on the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, and the Recombinant DNA Advisory Committee.

2. For an example, see the reference to remarks of Albert R. Jonsen in Alexander Morgan Capron, “Looking Back at the President's Commission,” Hastings Center Report 13, no. 5 (October 1983):8.

3. Suzanne Wymelenberg for the Institute of Medicine, Science and Babies: Private Decisions, Public Dilemmas (Washington, D.C.: National Academy Press, 1990), p. 154.

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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4. Michael S. Yesley, “The Use of an Advisory Commission,” Southern California Law Review 51 (1978):1452.

5. For a discussion of the implications of philosophers' participation in these bodies, see “Symposium on the Role of Philosophers in the Development of Public Policy,” Ethics 97 (July 1987):775-791.

6. Capron, “Looking Back at the President's Commission,” p. 8, note 2.

7. Stephen Toulmin, “The Tyranny of Principles,” Hastings Center Report 11, no. 6 (December 1981):32.

8. Alan J. Weisbard and John D. Arras, “Commissioning Morality: An Introduction to the Symposium, Commissioning Morality: A Critique of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, ” Cardoza Law Review 6 (1984):226. Ronald Bayer makes the further point that often consensus is illusory, being merely the common view of those who share the same ideology. (See Ronald Bayer, “Ethics, Politics, and Access to Health Care: A Critical Analysis of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research,” Cardoza Law Review 6 [1984]:309.)

9. Morris B. Abram and Susan M. Wolf, “Public Involvement in Medical Ethics,” New England Journal of Medicine 310, no. 10 (March 8, 1984):629. Alexander Morgan Capron, executive director of the President's Commission, noted the benefits of consensus but was more cautious, observing that “only time will tell whether consensus was ever bought at too great a cost; my sense is that it was not” (Capron, “Looking Back at the President's Commission,” p. 8, note 2).

10. This point was made by several commentators on the work of the President's Commission. For example, Jay Katz said: “The morality of commission reports, past and future, requires study of the question of whether societal morality is better served by documenting the complexities inherent in any ethical recommendation for the conduct of human affairs than by making light of the complexities through striving for a consensus report” (Jay Katz, “Limping Is No Sin: Reflections on Making Health Care Decisions,” Cardoza Law Review 6 [1984]:247).

11. With respect to the issue of human fetal tissue transplantation research, private groups have attempted to fill this void. The efforts of the Center for Biomedical Ethics at the University of Minnesota are particularly noteworthy. See Dorothy E. Vawter et al., The Use of Human Fetal Tissue: Scientific, Ethical, and Policy Concerns, A Report of Phase I of an Interdisciplinary Research Project conducted by the Center for Biomedical Ethics (Minneapolis: University of Minnesota, 1990).

12. For a list of questions, see Weisbard and Arras, “Commissioning Morality,” p. 226, note 8.

13. The Bioethics Board expired in 1989 (135 Cong. Rec. S15309 [November 9, 1989]). It was charged with examining on a continuing basis “ ethical issues arising from the delivery of health care and biomedical and behavioral research.”

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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Commentary

Walter Harrelson

It is good to have a case study outlining the process by which a group of medical and nonmedical specialists arrived at a set of recommendations to a governmental body concerned with health. The case study by James Childress charts the course traversed by the HFTTR panel in reaching the conclusions and recommendations contained in its report to the U.S. Department of Health and Human Services. The work of this panel shows the value and limitations of using panels of medical and nonmedical experts, working together over time, to frame policy for the nation in instances that involve highly controversial and divisive issues. Both the value and the limitations of such groups are related to their process.

Often, the issues can come into clearer focus through such deliberations if panelists are carefully selected and the panel has sufficient time to work together under a leadership that presses for clarity and consensus. Even under optimal circumstances, however, it is difficult to reach a useful consensus about such matters and to agree on language that is publicly comprehensible and aesthetically appealing to general readers.

The list of questions presented to the panel by the assistant secretary for health was quite specific, but the questions invited, and may have been intended to produce, debate over a rather wide front. Some of them were general

Walter Harrelson is Distinguished Professor of Hebrew Bible, emeritus, at Vanderbilt University and former dean of its Divinity School.

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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public policy questions; some were legal and others medical questions. Some in particular required extended deliberations by moral philosophers, ethicists, and theologians. The members of the panel seem to have been well equipped to deal with most, if not all, of these questions. Some panel members focused almost exclusively on the question of how the use of human fetal tissue might encourage abortion or constitute an action that could involve “complicity” in abortion. As a result, most of the panel's time was devoted to this central question.

The case study indicates that the Department of Health and Human Services received what it desired: a sophisticated set of responses to questions touching on legal, medical, moral, and general public policy aspects of the use of fetal tissue for transplantation, questions that, because of their link to the politically volatile issue of abortion, were under rigorous discussion within U.S. society. The panel composition may not have been ideal, because the responses of some panelists did not allow the discussion to maintain its focus on the use of fetal tissue obtained through induced abortions. But discussions of issues of this sort frequently take the course that the participants demand.

Did, however, Health and Human Services, and the public generally, get what it most needed from the panel's report? I would argue that it did not. What was most needed was not only a cogent, clarifying discussion of the issues by medical and nonmedical experts but also a rhetorically and aesthetically attractive report. When one enters the field of public policy debate on issues that are as strongly controversial as abortion, one must find a language and a set of images that will help a polarized community begin to build elements of consensus. It is important, indeed, that the panel itself was able to arrive at a consensus that included persons with quite different views on abortion. It is equally important that the positions of those panel members who dissented were powerfully and eloquently stated, so that political decisions would not be made without a sharpened awareness of such positions. What was lacking in the case study, and apparently lacking in the report of the panel, was a document of the style that is urgently needed today: an eloquent, appealing, quotable report that can assist the decision maker both in the making and later in the defense of difficult policy decisions.

This report was not primarily a scientific or a fact-finding report but one that described the deliberations of specialists from a number of disciplines who sought to clarify and move to a different level a controversy that urgently required both; that is, clarification and restatement in more useful, usable terms. When the experts themselves fail to provide this second articulation of the fruits of their deliberations, they leave the door open for two particularly unhappy outcomes (plus others, no doubt). One of these outcomes is apparent in this case: the administrator decides to do nothing—to leave standing the moratorium on governmental funding of fetal tissue transplan-

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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tation research. The other has also appeared, and will appear again and again: administrators and political leaders resort to their own forms of persuasion and demagoguery in dealing with the issue, and the public is neither better informed nor provided with fresh terms and images with which to view and address the issue. In this regard, the panel missed a fine opportunity.

Suggested Citation:"Deliberations of the Human Fetal Tissue Transplantation Research Panel." Institute of Medicine. 1991. Biomedical Politics. Washington, DC: The National Academies Press. doi: 10.17226/1793.
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Next: Asilomar and Recombinant DNA: The End of the Beginning »
Biomedical Politics Get This Book
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The abortifacient RU-486 was born in the laboratory, but its history has been shaped by legislators, corporate marketing executives, and protesters on both sides of the abortion debate.

This volume explores how society decides what to do when discoveries such as RU-486 raise complex and emotional policy issues. Six case studies with insightful commentary offer a revealing look at the interplay of scientists, interest groups, the U.S. Congress, federal agencies, and the public in determining biomedical public policy—and suggest how decision making might become more reasoned and productive in the future.

The studies are fascinating and highly readable accounts of the personal interactions behind the headlines. They cover dideoxyinosine (ddI), RU-486, Medicare coverage for victims of chronic kidney failure, the human genome project, fetal tissue transplantation, and the 1975 Asilomar conference on recombinant DNA.

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