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.

Download full-text


Available from: Dorothy Hatsukami, Jul 21, 2014
  • Source
    • "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"
    [Show abstract] [Hide abstract]
    ABSTRACT: This study examines communication about limitations of genomic results interpretation for colon cancer risk during education and counseling of minority participants. As part of a larger study conducted from 2010 to 2012, participants recruited from a large primary care clinic were offered testing for a research panel of 3 genomic markers (single nucleotide polymorphisms or SNPs) for colorectal cancer risk. Genetic counselors conducted pre- and post-test sessions which included discussion of limitations of result interpretation due to the lack of racial/ethnic diversity in research populations from which risk data are derived. Sessions were audio-recorded, transcribed and thematically analyzed. Many participants did not respond directly to this limitation. Among the participants that responded directly to this race-related limitation, many responses were negative. However, a few participants connected the limited minority information about SNPs with the importance of their current research participation. Genetic counselor discussions of this limitation were bio-medically focused with limited explanations for the lacking data. The communication process themes identified included: low immediacy (infrequent use of language directly involving a participant), verbal dominance (greater speaking ratio of the counselor to the patient) and wide variation in the degree of interactivity (or the amount of turn-taking during the discussion). Placed within the larger literature on patient-provider communication, these present results provide insight into the dynamics surrounding race-related educational content for genomic testing and other emerging technologies. Clinicians may be better able to engage patients in the use of new genomic technology by increasing their awareness of specific communication processes and patterns during education or counseling sessions.
    Social Science & Medicine 08/2014; 114. DOI:10.1016/j.socscimed.2014.05.014 · 2.89 Impact Factor
  • Source
    • "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]. "
    [Show abstract] [Hide abstract]
    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.
    12/2013; 2013(4):749563. DOI:10.1155/2013/749563
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: We developed a breast cancer genetic epidemiology study in collaboration with a community partnership to optimize recruitment and participation of African American women. We recognized that recruitment of relatives for a family-based study was a unique challenge in this minority group in the USA. Through an established partnership with The National Witness Project, we convened focus groups to identify potential recruitment challenges and issues related to decisions about study participation that may be unique to African Americans and family-based recruitment. Using the PEN-3 model, we analyzed qualitative data and applied the thematic findings to our recruitment protocol in order to mitigate potential recruitment challenges. The most relevant positive themes included a need for research and education and potential benefit to future generations. Negative themes included communication barriers in sharing disease status within a family and historical issues such as fatalistic attitudes and shamefulness of cancer. Collaboration with community partners allowed for development of culturally appropriate recruitment strategies for African American breast cancer survivors and their family members for a genetic epidemiology study. Understanding factors unique to family-based recruitment in the USA is a significant factor in enhancing participation of under-represented minorities in future genetic studies.
    Journal of community genetics 12/2011; 2(4):223-31. DOI:10.1007/s12687-011-0059-8
Show more