Ethics: Public and Private

Lacking a formal, broadly based deliberative body, the United States has had to rely on the ad hoc efforts of groups like the American Medical Association as means for examining and reaching conclusions about a range of bioethical issues. Despite the impetus of an October 1993 Senate hearing on public bioethics ethics policymaking and the introduction of Senate Bill S. 1042, [1] momentum toward congressional action on proposals for a new advisory panel has apparently dissipated. Yet several recent developments - in science, in public policy, and in the activities of unofficial ethics bodies - serve as reminders of the need for prompt legislative action. The most striking signals come in the form of new scientific findings whose social and ethical consequences have not been adequately addressed, much less resolved, through the existing venues. One example was the mid-September announcement that the gene implicated in many cases of familial breast cancer (BRCA1) had been discovered.[2] While various groups at the National Center for Human Genome Research have worked conscientiously on the ethical, social, and legal issues of genome mapping, little public discussion has occurred on such important issues as whether scientists should be able to patent a human gene like BRCAI. Are such questions to be left to the Patent Office to resolve on technical grounds? Similarly, what are the implications of the expected development of means for routine BRCA1-testing for the 600,000 American women who may carry defective versions of this gene, especially when they apply for health or life insurance? A National Advisory Commission While the constant stream of headline-grabbing scientific developments provides dramatic reminders of the absence of answers, a perhaps more compelling reason for congressional action may be the White House Office of Science and Technology Policy's proposed charter for a new National Bioethics Advisory Commission.[3] The members of the bioethics panel, actually an advisory committee to the National Science and Technology Council (NSTC), would come from outside the government. The president may appoint up to fifteen members, including the chairperson, for overlapping four-year terms, with at least three members coming from the general public and at least one each from bioethics and theology, social and behavioral science, law, medicine and allied health professions, and biological research. The commission "shall identify broad, overarching principles to govern the ethical conduct of research,, but shall not be responsible for the review and approval of individual projects." While probably better than nothing, the proposed National Bioethics Advisory Commission has three major drawbacks over a legislatively authorized body: mandate, location, and independence. Despite the claim that the new body "would expand the work" of such predecessors as the National Commission for the Protection of Human Subjects and the President's Commission for the Study of Ethical Problems in Medicine, its proposed mandate is vague. The charter concentrates on "the bioethical issues arising from research on human biology and behavior," which suggests that the commission's existence would obviate the need for ad hoc panels like those convened recently on such problems as radiation research and experiments with human embryos. Clearly, for reasons both of consistency and of efficiency, a standing body has many advantages, yet the Office of Science and Technology Policy does not mention the ad hoc panels in justifying the National Bioethics Advisory Commission, leaving doubt whether it is conceived as a substitute for the problem-specific bodies. The Office of Science and Technology Policy candidly admits doubt about how best to define the scope of the commission's charge to meet public needs for deliberation of bioethical issues "without being so broad as to limit its effectiveness. …