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Biomedical Politics (1991) / Chapter Skim
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Deliberations of the Human Fetal Tissue Transplantation Research Panel
Pages 215-257

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From page 215...
... He served on the Human Fetal Tissue Transplantation Research Panel.
From page 216...
... . 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)
From page 217...
... 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.
From page 218...
... (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
From page 219...
... 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)
From page 220...
... 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.
From page 221...
... 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" (DHE353/ NIH, 1988:21.
From page 222...
... 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, 1988:21.
From page 223...
... 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.
From page 224...
... Critics charge that HFTTR would reduce some pregnant women's ambivalence about abortion so that the possibility of an altruistic actwhat could be called "general altruism" would probably lead to some abortions that would not otherwise have occurred. Defenders of HERR 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)
From page 225...
... 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, 1988:101. 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: '\et 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.
From page 226...
... 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
From page 227...
... 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, 1988:81. 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.
From page 228...
... 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.
From page 229...
... 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
From page 230...
... "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, 1988:61. (The panel heard some evidence that fetal tissue probably has been viewed at times as abandoned and has been used without maternal consent EDHHS/NIH, 1988:111.)
From page 231...
... 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.
From page 232...
... 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.
From page 233...
... 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.
From page 234...
... 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 benef~t-risk ratios (Levine, 19861.
From page 235...
... 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, 19881. 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.
From page 236...
... 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.
From page 237...
... 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, 19891. 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.
From page 238...
... 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, 19901. 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.
From page 239...
... One important question in the United States is whether, as some critics claim, public policy regarding HOUR 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.
From page 240...
... 5661) that would lift the ban on federally approved fetal tissue transplantation research failed passage near the end of the 101st Congress.
From page 241...
... HUMAN FETAL TISSUE T0NSP~ATION SEARCH · 241 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.
From page 242...
... Consequently, before making a decision on your proposal, 1 would like You to convene one or more special outside advisory committees that would examine comprehensively the use of human fetal tissue [ram induced abortions [or 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.
From page 243...
... Would a prohibition on donation between family members jeopardize the likelihood of clinical success? 6 If transplantation using fetal tissue [ram induced abortions becomes more common, what impact is likely to occur on activities sod procedures employed by abortion clinics7 In particular, 18 the optimal or safest way to perform an abortion likely to be in conflict with preservation of the fetal tissue?
From page 244...
... ' 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.
From page 245...
... King, Professor of Law, Georgetown University Law Center, Washington, D.C. Paul Lacy, Professor of Pathology, Washington University School of Medicine, St.
From page 246...
... Pp. 39-43 in Report of the Human Fetal Tissue Transplantation Research Panel, vol.
From page 247...
... Pp. 29-43 in Report of the Human Fetal Tissue Transplantation Research Panel, vol.
From page 248...
... 1989. On transplanting human fetal tissue: Presumptive duties and the task of casuistry.
From page 249...
... The case study of the HFTTR panel) 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.
From page 250...
... Moreover, it is not clear whether an effort to reach consensus atthe 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, "the issues presented by modern medicine and research involve too many of the central facets of human existence .
From page 251...
... 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 conclitions. It was probably necessary to describe the process that resulted in acceptance of this point rather than merely stating it.
From page 252...
... 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?
From page 253...
... If the relationship between ethical analysis and publ ic pal icy formulation had been better unclerstood, 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.
From page 254...
... 11 . With respect to the issue of human fetal tissue transplantation research, private groups have attempted to fill this void.
From page 255...
... 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.
From page 256...
... 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.
From page 257...
... COMMENTARY · 25 7 tation research. The other has also appearecl, 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 aciciress the issue.


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