Inclusion of African Americans in Genetic Studies: What Is the Barrier?

Department of Psychiatry, School of Medicine, Washington University, St. Louis, Missouri 63110, USA.
American journal of epidemiology (Impact Factor: 5.23). 06/2011; 174(3):336-44. DOI: 10.1093/aje/kwr084
Source: PubMed


To facilitate an increase in the amount of data on minority subjects collected for genetic databases, the authors attempted to clarify barriers to African-American participation in genetic studies. They randomly sampled 78,072 subjects from the community (Missouri Family Registry, 2002-2007). Of these, 28,658 participated in a telephone screening interview, 3,179 were eligible to participate in the genetic study, and 1,919 participated in the genetic study. Response rates were examined in relation to the proportion of subjects in the area who were African-American according to US Census 2000 zip code demographic data. Compared with zip codes with fewer than 5% African Americans (average = 2% African-American), zip codes with at least 60% African Americans (average = 87% African-American) had higher proportions of subjects with an incorrect address or telephone number but lower proportions of subjects who did not answer the telephone and subjects who refused the telephone interview (P < 0.0001). Based on reported race from the telephone screening, 71% of eligible African Americans and 57% of eligible European Americans participated in the genetic study (P < 0.0001). The results of this study suggest that increasing the number of African Americans in genetic databases may be achieved by increasing efforts to locate and contact them.

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Available from: Dorothy Hatsukami, Jul 21, 2014
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    • "Other reasons , such as the failure of researchers to better engage and invite racial / ethnic minorities to participate in genetics and genomic research ( Hartz et al . , 2011 ) or the actual lower number of racial / ethnic minorities compared to number of people in the racial majority were not consistently discussed . Two examples of providing explanations other than lower rates of research partici - pation are presented below : 2031 V1 ( to an African American participant ) : Genetic counselor e Probably so"
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    • "Many in the scientific, medical, and advocacy arena, concerned about the excess disease-related morbidity and mortality and health disparities experienced by African Americans and other racial/ethnic minority populations, believe that the inclusion of biological specimens (and other health-related data) from African American and other racial/ethnic minority populations is essential [12–14]. However, an ever increasing number of reports allude to the limited inclusion of biological specimens (and other health-related data) from ethnic/racial minorities in biorepositories [15–23]. "
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    ABSTRACT: The involvement of African Americans in research has long been expressed as a concern by the scientific community. While efforts have been undertaken to identify factors inhibiting the participation of African Americans in health-related research, few efforts have been undertaken to have highlight factors associated with their engagement of health-related research. An exploratory study of factors presumed to be associated with participation in health-related research was conducted among a nonprobability sample of African Americans (n = 212) from a large urban community in the Midwest. The study was guided by a framework that hypothesized the influence of knowledge, beliefs, and perceptions about genetics and the involvement of providers in decision-making on willingness to participate in health-related genetic research. The results revealed that knowledge, beliefs, and perceptions about genetics and the involvement of providers were associated with willingness to engage in health-related genetic research (P < .05). The most interesting, however, was that 88.7% of the participants who had not previously been involved in a health-related study who expressed a willingness to participate reported that they "had never been asked." Study findings suggest the need for research that further examines factors associated with the involvement of African Americans in health-related genetic research.
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