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Involving Study Populations in the Review of Genetic Research

Published online by Cambridge University Press:  01 January 2021

Richard R. Sharp  and
Morris W. Foster
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Extract

Research on human genetic variation can present collective risks to all members of a socially identifiable group. Research that associates race or ethnicity with a genetic disposition to disease, for example, presents risks of group discrimination and stigmatization. To better protect against these risks, some have proposed supplemental community-based reviews of research on genetic differences between populations. The assumption behind these appeals is that involving members of study populations in the review process can help to identify and minimize collective risks that otherwise could go unnoticed. In contrast to this position, critics have argued that supplemental community-based reviews are unnecessary, impractical, and morally problematic. This paper is our attempt to advance this debate by distinguishing the various goals of community review and the forms that it can take.

Type
Article
Information
Journal of Law, Medicine & Ethics , Volume 28 , Issue 1 , Spring 2000 , pp. 41 - 51
Copyright
Copyright © American Society of Law, Medicine and Ethics 2000

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We prefer the term “review” because it has both evaluative and non-evaluative associations. Depending on the context, to “review” a proposal can mean to survey the issues it presents or evaluate its merits. Hence, , community review can be seen as including both formal evaluations (e.g. group consent), as well as other methods of surveying potential risks to socially identifiable groups that stop short of comprehensive evaluations (e.g. community consultation).Google Scholar
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