Will the Real Bioethics (Commission) Please Stand Up

Just prior to the election of President Clinton in September 1992, Senators Edward M. Kennedy, Mark O. Hatfield, and Dennis DeConcini asked the Office of Technology Assessment of the U.S. Congress to examine past bioethics entities in the context of the question: "If Congress decides to create a new federal bioethics body, what does past experience reveal about which particular factors promote success and which should be avoided?" OTA's report, Biomedical Ethics in U.S. Public Policy, is dated June 1993, but was not widely distributed until October 1993. The OTA report does not define bioethics (except to say it is the same as biomedical ethics), but the report implies that the field is devoted to systematic reflection about the values that underlie action in the practice of medicine and research. Bioethics is, in other words, ethics applied to medicine. The report concentrates on four bioethics groups: the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (National Commission) (1974-87); the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (President's Commission) (1979-83); the Biomedical Ethics Advisory Committee (Advisory Committee) (1988-89); and the Ethics Advisory Board (EAB) (1977-80). Since the EAB was not a creature of congressional action and acted more like a limited federal institutional review board, it is really not comparable to the others. Of the three congressionally mandated groups, OTA declared the first two successful and the last unsuccessful. The Advisory Committee failed because its parent Congressional Biomedical Ethics Board (consisting of six senators and six representatives) deadlocked along pro-choice/antiabortion lines; the committee was only able to hold two meetings before it expired in September 1989. The National Commission was formed to develop the current federal regulations on the protection of human subjects of biomedical and behavioral research. The regulations define substantive protections for human subjects. Their implementation is left primarily to institutional review boards (IRBs) which are dominated (as was the National Commission) by researchers themselves. Nonetheless, this combination of substantive rules applied by a review committee has increased the awareness of ethical issues in human research. The President's Commission was formed to "undertake studies of the ethical and legal implications" of specified subjects, and issued its reports in book form. All were useful documents. Defining Death, for example, was highly influential in prompting most states to adopt a uniform law. Deciding to Forego Life-Sustaining Treatment both provoked discussion and was widely cited by the courts. Securing Access to Health Care, while a useful general work, was so vague in its recommendations that it probably helped insure that economists, not ethicists, would build the framework for a national health care plan. In this it reflected a major limitation in U.S. bioethics over the past two decades: bioethics has focused almost exclusively on doctor-patient relationship issues, rather than broader health care system issues. Because of the field's marginalization of universal access to health care, for example, the ethics cluster group in the Clinton Health Care Task Force had no agreed-upon principles to refer to in adopting its "list of principles and values" to undergird a national health care system. Their ultimate list of fifteen values and principles was revised prior to the publication of the September 9 draft (by dropping "health care's fundamental ethical importance" and "progressive financing," replacing "intergenerational solidarity" with "intergenerational justice" and adding "local responsibility"). (See "PRELIMINARY ANNOUNCEMENT and CALL FOR PAPERS"). Hillary Rodham Clinton ultimately jettisoned the ethics list altogether and replaced it with her own list of six characteristics, goals, or "guiding stars": security, simplicity, choice, savings, quality, and responsibility. …