Communal discourse as a supplement to informed consent for genetic research

Nat Genet. 1997 Nov;17(3):277-9. doi: 10.1038/ng1197-277.

Abstract

Genetic technologies present unique problems for the practice of informed consent. They provide information that may affect a study participant's family or kindred, which may be identifiable as an ethnic or locally isolated population. That information may be used to construct adverse perceptions of such identifiable populations, including non-participants who may not have been informed of or consented to the analyses. To address collective implications of genetic research, we describe a process that can supplement individual consent. Our approach engages pre-existing social units in discourses about proposed research. Communal discourses can influence individuals' decisions to participate in research studies.

Publication types

  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, Non-P.H.S.
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Attitude
  • Ethics, Medical
  • Genetic Research*
  • Genetics, Medical*
  • Genetics, Population
  • Humans
  • Indians, North American
  • Informed Consent*
  • Research Design*
  • Research Subjects
  • Researcher-Subject Relations
  • Risk Assessment
  • Social Perception
  • Third-Party Consent