Medical Research and Dependent People

Medical Research and Dependent People

How may children and other dependent individuals are subjects in research projects to which they cannot consent and from which they cannot benefit? This topic was much discussed in the United States about twenty-five years ago, but has recently reemerged in the discussion of the European Convention on bioethics and through current discussion in the medical literature of the kinds of consent and experiments appropriate in the Third World. I summarize the U.S. discussion and "solution," present the current European discussion, and conclude with a proposal for understanding and organizing the participation of dependent people in medical experiments. Most of the attempts to understand dependent individuals’ participation in non-therapeutic experiments have attempted to assimilate that participation to a model of informed consent appropriate for adults. I argue that such understanding is false to the nature both of dependency and non-therapeutic experiments. The dependency of childhood, which serves my model, is best viewed in the context of a family committed to the full development of children. Given that commitment, the family involves itself in many activities in the hope of the physical, intellectual and moral development of its members. Non-therapeutic experiments are best seen, not in terms of risk, but in terms of the time and energy commitments they require of participants. Given these understandings of dependency and non-therapeutic experiments, I argue that care-givers are competent to involve themselves and their dependents in scientific work.

How may children and other dependent individuals be subjects in research projects to which they cannot consent and from which they canno...

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...and the Freedom to Take Risks," NEJM (1982) 307:1157.

Paul Ramsey, The Patient as Person (New Haven, 1973).

Paul Ramsey, "The Enforcement of Morals: Nontherapeutic Research on Children," Hastings Center Report 6(1976), 26 - 28.

Paul Ramsey, "Some Rejoinders, Journal of Religious Ethics (1976) 4:215 - 223.

Trials of War Criminals before the Nuremberg Military Tribunals (Washington, D.C. 1948), reprinted in Mappes and DeGrazia, Biomedical Ethics, 4th ed. (McGraw-Hill, 1996), p. 199.

United States National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, Research Involving Children: Report and Recommendations (Washington, D.C., 1977).

World Medical Association, Declaration of Helsinki: Recommendations Guiding Physicians in Biomedical Research Involving Human Subjects, Reprinted in JAMA, (1979) 277: 925 - 926.
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