Foster M W, Eisenbraun A J, Carter T H
Department of Anthropology, University of Oklahoma, Norman 73019, USA.
Nat Genet. 1997 Nov;17(3):277-9. doi: 10.1038/ng1197-277.
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.
基因技术给知情同意的实施带来了独特的问题。它们提供的信息可能会影响研究参与者的家庭或亲属,而这些家庭或亲属可能被认定为某个种族或当地的孤立群体。这些信息可能会被用来构建对这类可识别群体的负面看法,包括那些可能未被告知或未同意进行分析的非参与者。为了解决基因研究的集体影响问题,我们描述了一个可以补充个人同意的过程。我们的方法让现有的社会单位参与关于拟议研究的讨论。社区讨论可以影响个人参与研究的决定。