December 1980 II/4
ETHICAL NORMS FOR MEDICINE IN THE UNITED STATES
Who formulates the ethical norms for medicine and health care in the United States? I imagine that some people would respond to this question by saying that the American Medical Association formulates the ethical norms for medicine and health care, others would say that ethical norms are formulated by the philosophers or theologians and still others might say that, for them, their churches formulate the significant ethical norms. While there is some truth in each one of these answers, a more important source of ethical norms for medicine and health care in the U.S. is the Federal Government. Because the presence of the federal government in the field of ethics is novel and even revolutionary, it merits further comment. Thus I shall offer a few thoughts about the history of this presence, about the work of various federal commissions in the field of medical ethics, and comment upon the work that has been done to date.
In the late 1960's and early 1970's, Congress became uneasy, in fact, disturbed, about the implications of scientific progress. Revolutionary advances in science and technology were predicted, for example, genetic engineering and DNA splicing, and it was feared that these advances might have damaging effects upon individuals and society. Fresh in everyone's mind was the experience with atomic power during World War II. The strong belief of Americans that scientific progress always leads to a better life had been destroyed at Nagasaki and Hiroshima. At the same time, public outrage arose over some scientific research projects which had violated the human rights of some individuals. For example, a study was made public in which aborted fetuses were decapitated in order to perform pharmaceutical tests. Moreover, the Tuskeegee Syphilis Study, which withheld from some poor black men afflicted with syphilis the cure for this disease, was revealed. Hence, due to the general apprehension about revolutionary scientific developments and the sharp public reaction to specific abuses in the area of research, Congress in July of 1974 brought into being The Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (CFHS). As its name indicates, the mandate for this commission was to set ethical guidelines for research projects involving human beings, especially those whose rights might be violated. When the life of this commission ceased, the Secretary of the Department of Health, Education and Welfare appointed an Ethics Advisory Board (EAB), in the spring of 1978, to continue the study of ethical issues and public policy. This advisory board was superseded by another group created by Congress, November 9, 1978, called The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. (PCEMR).
The productivity of the three above mentioned federal commissions has been impressive. The CPHS published more than ten studies in its four-year life on such subjects as research on fetuses, children, prisoners, and the mentally infirm; it also studied psychosurgery, put forth ethical guidelines for delivery of health care by government agencies and set forth standards for Institutional Review Boards (IRE). In the Belmont Report, the CPHS sought to synthesize the ethical principles it had utilized in its studies. The EAB, because of its short existence, studied only one ethical problem at length, that of in vitro fertilization. The PCEMR was commissioned by Congress to consider many ethical issues, such as brain death, availability of health services, and testing in regard to genetic disease. To date, it has not published any reports.
While I shall not attempt to evaluate any of the particular documents emanating from the above mentioned federal commissions, the following general comments are offered:
1. The very fact that Congress recognizes the need for ethical norms in the field of research and therapy is a step forward. For the most part, the norms set forth by the commissions are useful and protect the rights of scientists and physicians as well as subjects and patients.
2. The norms formulated by the commissions are designed with our pluralistic society in mind. Thus they seek to enunciate what most scientists, politicians, and religious thinkers will agree upon. Though they do not state it explicitly, it is clear that they avoid controversy and hence some of the more difficult and important ethical issues are not considered; for example, the value of fetal life, the~time when human life begins, and the meaning of health.
3. Though some of the more important norms concerning physician-patient relationships are considered, for example, informed consent and justice in selection of subjects, there is little consideration of the pressing ethical questions concerning society-physician-patient , such as, is there a right to equal health care for all, should all feasible care be financed publicly, what are the goals for our national health programs?
4. The basis upon which these ethical statements are formulated is not the nature of the human person, the covenant between physician and patient, the just society, nor religious teaching. Rather, the basis is what is culturally acceptable. Deciding ethical responsibilities in this manner is dangerous because it justifies whatever is popular. The ethicist should continually question and evaluate what is culturally acceptable, judging it upon more fundamental values.
5. The motivation for observing the norms of the federal commissions is mainly monetary. If a person or institution does not observe these norms, the person or institution will not receive federal funding and might be subject to malpractice litigation. Thus, in a certain sense, these "ethical statements" emanating from the federal commissions are legal norms insofar as the motivation for observing them is concerned. Though ethicists may differ in detail as to the proper motivation for ethical activity, avoiding legal sanctions is not considered by any ethicist to be the ultimate justification for ethical action.
In sum, the deliberations of the federal commissions have been worthwhile in that they have brought to our attention the need for ethical norms in the field of research and therapy. But because the agencies avoid some of the more important questions as they concentrate on expressing consensus and because the norms are based upon a weak foundation, it is clear that more rigorous thinking must be applied to the modern ethical issues in medicine, research and health care.
Kevin O'Rourke, OP
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