The role of community review in evaluating the risks of human genetic variation research

Morris W. Foster, Richard R. Sharp, William L. Freeman, Michelle Chino, Deborah Bernsten, Thomas H. Carter

Research output: Contribution to journalArticle

84 Scopus citations

Abstract

The practicality and moral value of community review of human genetic research has become a focus of debate. Examples from two Native American communities are used to address four aspects of that debate: (1) the value of community review in larger, geographically dispersed populations; (2) the identification of culturally specific risks; (3) the potential conflict between individual and group assessments of research-related risks; and (4) the confusion of social categories with biological categories. Our experiences working with these two communities suggest that: (1) successful community review may require the involvement of private social units (e.g., families); (2) culturally specific implications of genetic research may be identifiable only by community members and are of valid concern in their moral universes; (3) community concerns can be incorporated into existing review mechanisms without necessarily giving communities the power to veto research proposals; and (4) the conflation of social and biological categories presents recruitment problems for genetic studies. These conclusions argue for the use of community review to identify and minimize research-related risks posed by genetic studies. Community review also can assist in facilitating participant recruitment and retention, as well as in developing partnerships between researchers and communities.

Original languageEnglish (US)
Pages (from-to)1719-1727
Number of pages9
JournalAmerican journal of human genetics
Volume64
Issue number6
DOIs
StatePublished - 1999

ASJC Scopus subject areas

  • Genetics
  • Genetics(clinical)

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