Bioethics on the Congressional Agenda

Abstract

Bioethics on Congressional Agenda Many people involved with bioethics are aware that U.S. Congress passed legislation almost three-and-a-half years ago that authorized a standing body to deal with issues in this field, but most of them seem also to believe that nothing came of that legislation. In a way they are right--but may still be proven wrong. To understand why, it helps to look back a few years, to a time even before there was a Hastings Center. Congress has long recognized that developments in biomedical research and in delivery of health care raise profound and often troubling ethical issues to which it ought to attend in framing public policy on a wide variety of subjects. As early as 1968, then-Senator Walter Mondale introduced a joint resolution to establish a national advisory commission to the ethical, social, and legal implications of advances in biomedical research and technology. A history of involvement with bioethical issues has yet to make them easy ones for Congress to address, however. In 1974, following revelations of various abuses in research with human subjects, Congress adopted National Research Act. This law not only mandated institutional review boards at facilities that conduct federally funded human subjects research but also established within then-Department of Health, Education, and Welfare (HEW) a National Commission for Protection of Human Subjects of Biomedical and Behavioral Research. In addition to its responsibilities to report on principles and process of such research (which it did over following four years in a series of influential reports), National Commission was also given an assignment derived from Senator Mondale's proposal: to conduct a special study on implications of biomedical advances. Apparently pleased with National Commission's work--but also recognizing that issues beyond research had received least attention from commission--Congress authorized a successor body. The President's Commission for Study of Ethical Problems in Medicine and Biomedical and Behavioral Research was likewise made up of ethicists, lawyers, social scientists, and others in addition to physicians and researchers, but with a broader mandate (toward practice of medicine as well as research) and a government-wide purview. The National Commission had been quickly appointed and immediately began work on its first report (due three months after it was convened), but more than a year elapsed between passage of statute creating President's Commission in November 1978 and swearing-in of Commissioners at White House in January 1980. From my biased vantage-point (as executive director), reports of President's Commission seemed to be well received in Washington, as well as in hospitals and universities across country, and a proposal was made to extend sunset clause in its enabling legislation for several years beyond originally specified date of December 31, 1982. Some in Congress thought they would be better served by a body that was closer to legislative process, fearing that a conservative direction would mark continued existence of President's Commission, even though others argued that Commission (which acted unanimously on all recommendations and conclusions save one) had been too liberal. Instead of a two-year extension, just three months were added, and Commission issued last of its eleven reports and closed its doors on March 31, 1983. Two-and-a-half years later, building on a proposal first made by then-Representative Albert Gore, Jr. to establish a commission specifically on human genetic engineering, Congress included provisions in Health Research Extension Act of 1985 to create a Biomedical Ethics Board (BEB), made up of six representatives and six senators (evenly divided between two major parties), and a Biomedical Ethics Advisory Committee (BEAC) comprised of fourteen people from a variety of fields, to be appointed by BEB. …