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Little information exists on the willingness of different racial and ethnic groups to participate in genetic research
Scientists conduct genetic variation research to understand genetic differences between racial and ethnic groups, in hopes of addressing persistent racial/ethnic disparities in health. A recent review of studies on the topic revealed inadequate information to draw strong conclusions about the relative willingness of different groups to participate in genetic research. Advocates argue that significant genetic differences exist by racial/ethnic group, and that genetic variation research may lead to health benefits, such as improved understanding of disease susceptibility. Critics raise concerns about the validity of racial/ethnic group membership for studying genetic variation. They also assert that such research may encourage genetic determinism and scientific racism, divert attention from the powerful social and environmental determinants of health, and reinforce stereotypes about minority groups.
Investigators at the University of North Carolina, Chapel Hill, reviewed studies of public willingness to participate in and opinions about genetic research. They found limited racial/ethnic group diversity across the 14 studies, and only 6 studies compared consent by racial/ethnic group. Overall consent rates varied substantially in the eight studies that included actual requests for participation, with five studies showing overall consent rates below 40 percent. Whites had the highest consent rates (more than 75 percent) and those with personal/familial history of a genetic condition reported lower overall consent rates (ranging from 28 to 53 percent).
Six studies found racial/ethnic group membership to be a significant predictor of consent. In particular, black race was a significant predictor of lower levels of consent in all but one study. The seven studies that examined concerns and opinions about genetic research revealed concerns about the potential for those at risk of genetic conditions to be stigmatized and ostracized, the initiation of premature treatment, changes in familial expectations or interest in "designer babies," and religious objections. The study was supported in part by the Agency for Healthcare Research and Quality (HS00032).
See "Public willingness to participate in and public opinions about genetic variation research: A review of the literature," by Rene Sterling, M.H.A., Gail E. Henderson, Ph.D., and Giselle Corbie-Smith, M.D., M.S., in the November 2006 American Journal of Public Health 96(11), pp. 1971-1978.
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