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Experimentation and Human Genetics: Problems of “Consent”

  • Alexander M. Capron

Abstract

As in all fields of medicine, the modern practice of human genetics is closely linked with experimentation. Genetics research sometimes involves patients who are offered new and as yet unproven means of therapy or diagnosis that are intended to benefit the patients, such as the levodopa challenge which is being explored as a test to detect Huntington’s chorea (1) and which has raised such a storm of controversy (2–4). The experimentation may also take the form of a procedure not intended to benefit its subjects, as for example routine mass screening of newborn infants to provide population data on chromosome aneuploidy, without any intention of following up detection with medical intervention (5). Needless to say, research on genetics poses all the problems and provokes the same argumentation as has occurred concerning other types of human experimentation, which is reflected in an ever growing body of literature (6-11). The involvement of the fetus in much of this research heightens interest and concern in this period when fetal experimentation is getting so much attention from the National Commission for the Protection of Human Subjects (12, 13) on down (14–16). Rather than attempt to address, in what would have to be a very cursory fashion, all the issues of “genetic experimentation,” I have chosen to concentrate on a type of intervention that raises problems which commentators often acknowledge but seldom (if ever) seem to dispose of.

Keywords

Russell Sage Foundation Fourth Amendment Proxy Consent Objective Rule Hastings Center Report 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

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Copyright information

© Plenum Press, New York 1976

Authors and Affiliations

  • Alexander M. Capron
    • 1
  1. 1.University of Pennsylvania Law SchoolUSA

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