Involving Study Populations in the Review of Genetic Research

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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).

A “study population” is a collection of individuals defined by researchers. We use the term “community” to describe a set of persons who share a set of common interests and who interact with each other socially (perhaps only indirectly). Thus, most study populations are comprised of many communities.

In this paper we consider the role of community review in relation to the study of genetic differences between populations. This includes many types of disease-susceptibility research, as well as anthropologic research that makes use of genetic differences to track the movement of populations over time. Nonetheless, much of what is said about community review and its role in identifying collective research-related risks also applies to other types of research. Many types of behavioral research, sociological research, and research on stigmatizing conditions that appear to be more prevalent in some populations and not others, implicate the same considerations discussed here in connection with genetic research. Arguably, whenever researchers attempt to make scientific claims about socially defined groups, that research can present collective risks to members of those groups.

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