Fall, 2002
By Alexander Morgan Capron
University Professor and Co-director of the
Pacific Center for Health Policy and Ethics
University of Southern California, Los Angeles
Alexander Morgan Capron was the executive director of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research during its entire existence, 1979 to 1983.
The topic of governmental bioethics commissions has little to do with the law (except for the statutes or executive orders under which they are typically established) and may seem too commonplace to deserve further thought. Yet many issues are imbedded in each of the topic's three parts: In what sense are such bodies governmental? How do they do bioethics? And what kinds of commissions are they? Let's start with this last question.
Public commissions come in a variety of forms, divided basically between permanent bodies to which Congress has delegated lawmaking functions and ad hoc panels that are convened to provide advice on a particular subject. At both the state and federal levels, panels of the former type have a history dating to the 19th century. Bodies such as the Interstate Commerce Commission and the Federal Trade Commission fill in the details of broad, general statutes that frame their respective fields by issuing rules and applying them in individual or categorical determinations. The members of such commissions are typically appointed by the chief executive and serve as full-time public officials, with expert advice from their staff. The members of ad hoc advisory panels - who may be appointed not only by the chief executive but by other executives or even legislative or judicial branch officials -
typically do not enter full-time governmental employ, though they too may be supported by staff. In most cases, they do not issue regulations or adjudicate individual claims but may offer advice to officials who do.
The several dozen federal and state "bioethics commissions" that have functioned over the past three decades have all been of the latter type - ad hoc and advisory. Indeed, most have existed for relatively brief periods, though several were established in a fashion that would have allowed them to continue indefinitely, and at least one specialized board (the Recombinant DNA Advisory Committee, or RAC) has existed for more than a quarter century. Yet being merely advisory is not inherent in the task of doing "public bioethics." For example, the UK's Human Fertilisation and Embryology Authority (HFEA) - a mixed panel of experts and laypersons, like commissions in the US - not only licenses fertility clinics but decides on ethical grounds whether particular assisted-reproductive technologies may be used. The HFEA recently permitted one couple to use preimplantation genetic diagnosis (PGD) to select embryos for implantation which were not only free of the genetic disease that affects the couple's first child but which would make well-matched donors of cord blood stem cells for the existing child. Conversely, PGD was denied to another couple because the condition affecting their existing child was extremely unlikely to recur and thus the only reason to select embryos would be to create a suitable donor.
The second aspect of these commissions is that they "do bioethics." Yet does it seem reasonable for a mixed group of
lay persons and experts from a range of fields, meeting for a day or two each month or so, to produce "bioethics"? If it were an academic discipline (a subset of phi1osophy or theology) or even a professional field, the answer would probably be "no." Committees aren't known for great, original thinking, and the eclectic
nature of bioethics commissioners makes that even less likely. But the roots of bioethics as an interdisciplinary field that arose in the late 1960s from collaborations among natural and social scientists, physicians, nurses, philosophers, theologians, lawyers and others, make it an ideal field for a public commission.
Furthermore, while bioethics commissions do undertake or sponsor original studies (which not only influence their conclusions but are published as appendices to their reports), their most important contributions are typically synthetic: having clarified the issues and arguments, they draw together the best current thinking and move the field forward by formulating a new consensus. Two reports by the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1980 to 1983) illustrate this point. 1,2 Among the topics assigned by Congress, the commission decided to start with "the matter of defining death" precisely because it had been debated for more than a decade and a broad agreement existed on how it should be resolved both medically and legally.
The commission was able to bring the other groups whose competing statutory proposals had stymied action in most states to agree on a uniform proposal - which was then quickly adopted across the country - and to facilitate the leading medical authorities on the subject to promulgate what was recognized as the accepted medical criteria for declaring death.
As an offshoot to this assigned topic, the commission decided to undertake another large study on the situations in which patients, families, and physicians must decide whether to forgo life-sustaining treatment. Medical thinking, case law, and public awareness on this topic were all rather rudimentary at this time. "Living wills" had been around for about 15 years but few people had them and only 15 states had "Natural Death" statutes authorizing the use of "directives to physicians." Moreover, most people - including many healthcare providers - operated from the assumption that it was wrong (and even illegal) ever to discontinue life-support, perhaps even when the patient's wishes to do so were known. Drawing on the best ethical and legal analysis, the commission articulated why this was not the case, provided a framework for hospital ethics committees
(which were just being widely instituted), and urged states to formulate and adopt durable power of attorney for healthcare statutes (which nearly all of them did over the decade that followed).
These two reports also help flesh out the significance of the topic's third facet, namely, that the commissions are "governmental." Plainly, nongovernmental bodies also propose legislation as well as changes in professional practices. Governmental commissions - especially those appointed by US presidents - have two advantages, however, one is visibility (and, if they do their work well, a sense of legitimate authority), and the other is that their pronouncements are seen as "official" in a sense that is helpful in getting action from legislators and bureaucrats, even when the commission operates at a federal level and its recommendations are for state action (as was true of the two reports I just described). This is not to say that recommendations are never ignored - especially once a commission's charter has expired and it is not around to pester policy makers for a response - but the governmental commissions still have more leverage than private ones.
At the same time, these commissions are not governmental in the sense a federal agency or Congressional committee is governmental. Indeed, several of the presidentially appointed commissions continued to function after a change of occupants at 1600 Pennsylvania Avenue, certainly straining the sense that they were part of the current administration. Even when they possess something close to decision-making power - as, for example, is true of the RAC for r-DNA research and gene transfer experiments that seek federal funding - bioethics commissions typically operate more like outsiders. Still, by virtue of their official status, they are more open and "transparent" in their processes than private bodies, which is a great virtue for those who favor democracy over rule by experts.
In the 30 years since the first steps were taken - in the wake of revelations of the Tuskegee experiment and other research scandals - to establish what became a succession of bioethics commissions, they have become familiar fixtures (not only in the US but around the world). Individually, they have had hits and misses in helping the public and policy makers understand modern biomedical science and practices and
their ethical and social implications. Yet collectively these commissions - both at the national level and in a number of states - have succeeded in building a bridge connecting the legislative and executive branches, experts and academics in science, philosophy and law, and the general public, and in aiding the adoption of better
governmental, organizational and professional policies, and the making of more ethically enlightened individual decisions.
Footnotes
1 President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral
Research. Defining Death: A Report of the Medical, Legal and Ethical Issues in the Determinations of Death. Washington DC: US Government Printing Office, July 1981.
2 President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to Forego Life-Sustaining Treatment: A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions. Washington DC: US Government Printing Office, March 1983.
in collaboration with
Dartmouth-Hitchcock Medical Center
The opinions expressed in the journal, Lahey Clinic Medical Ethics,
belong to the individual contributors and do not represent the institutional position
of Lahey Clinic on any subject matters discussed.
