The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research

Authors

Morris W. Foster, University of OklahomaFollow
Richard R. Sharp, National Institute of Environmental Health
William L. Freeman, Indian Health ServiceFollow
Michelle Chino, University of Nevada, Las VegasFollow
Deborah Bernsten, University of Oklahoma
Thomas H. Carter, University of Oklahoma Health Sciences Center

Document Type

Article

Publication Date

6-1999

Publication Title

American Journal of Human Genetics

Volume

64

Issue

6

First page number:

1719

Last page number:

1727

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.

Keywords

Genetics; Human genetics; Human genetics—Research; Indians of North America; Risk assessment

Disciplines

Community-Based Research | Genetics | Genetics and Genomics | Indigenous Studies

Language

English

Permissions

Use Find in Your Library, contact the author, or interlibrary loan to garner a copy of the item. Publisher policy does not allow archiving the final published version. If a post-print (author's peer-reviewed manuscript) is allowed and available, or publisher policy changes, the item will be deposited.

Repository Citation

Foster, M. W., Sharp, R. R., Freeman, W. L., Chino, M., Bernsten, D., Carter, T. H. (1999). The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research. American Journal of Human Genetics, 64(6), 1719-1727.