Article

Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study

Department of Genetics and Genomic Sciences, Mount Sinai School of Medicine, 1428 Madison Avenue, Box 1497, New York, NY, 10029, USA.
Journal of community genetics 09/2011; 2(3):153-63. DOI: 10.1007/s12687-011-0052-2
Source: PubMed

ABSTRACT In order for DNA biobanks to be a valuable reservoir of genetic information, large numbers of participants from all racial and ethnic backgrounds need to be recruited. This study explored reasons for participating in a new biobank among primarily Hispanic and African American individuals, as well as their general attitudes towards genetic research, and their views on obtaining genetic tests. Focus groups were conducted with Mount Sinai Biobank participants recruited from predominantly lower income, minority communities. The topic guide included questions on The Mount Sinai Biobank, genetic research, and genetic testing. All focus groups were audio recorded, transcribed, and analyzed using thematic analysis. The six focus groups comprised 43 participants: 39 females and four males, aged 27-76 years, with a median household income category of $20,000-$39,999. Twenty-one participants were Hispanic, 20 African American, one Asian, and one White. Participants' reasons for participating in the biobank included altruism, personal and family benefit, and general curiosity. Although there was evidence of conflation between genetic research and genetic testing, most participants held positive views of genetic research and expressed interest in receiving personal genetic test results. Participants wanted to learn more about genetic research and suggested various venues such as health fairs for disseminating information. Participation in biobanks by racial and ethnic minorities is apparently driven by altruism, and desire for personal or collective health benefits. Participants had generally positive attitudes, limited understanding of genetics and genetic research, and made useful suggestions regarding information dissemination mechanisms.

1 Follower
 · 
87 Views
  • Source
    [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; 2013:749563. DOI:10.1155/2013/749563
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Patients from traditionally underrepresented communities need to be involved in discussions around genomics research including attitudes towards participation and receiving personal results. Structured interviews, including open-ended and closed-ended questions, were conducted with 205 patients in an inner-city hospital outpatient clinic: 48 % of participants self-identified as Black or African American, 29 % Hispanic, 10 % White; 49 % had an annual household income of <$20,000. When the potential for personal results to be returned was not mentioned, 82 % of participants were willing to participate in genomics research. Reasons for willingness fell into four themes: altruism; benefit to family members; personal health benefit; personal curiosity and improving understanding. Reasons for being unwilling fell into five themes: negative perception of research; not personally relevant; negative feelings about procedures (e.g., blood draws); practical barriers; and fear of results. Participants were more likely to report that they would participate in genomics research if personal results were offered than if they were not offered (89 vs. 62 % respectively, p < 0.001). Participants were more interested in receiving personal genomic risk results for cancer, heart disease and type 2 diabetes than obesity (89, 89, 91, 80 % respectively, all p < 0.001). The only characteristic consistently associated with interest in receiving personal results was disease-specific worry. There was considerable willingness to participate in and desire for personal results from genomics research in this sample of predominantly low-income, Hispanic and African American patients. When returning results is not practical, or even when it is, alternatively or additionally providing generic information about genomics and health may also be a valuable commodity to underrepresented minority and other populations considering participating in genomics research.
    Journal of community genetics 06/2013; 4(4). DOI:10.1007/s12687-013-0154-0
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: We conducted a deliberative engagement to assess attitudinal changes regarding biobank research, governance, and the return of results. We recruited African-Americans from two Southside Chicago health care facilities that serve communities of very different socioeconomic and educational backgrounds in order to examine similarities and differences within the African-American population. We used a mixed method, deliberative engagement process involving a convenience sample of parents recruited from a Federally Qualified Health Clinic (FQHC) [n = 23] and a university-based practice (UBP) [n = 22]. Four coding categories illustrate similarities and differences between participants from the two different practices: (1) reasons for and against participation; (2) trust and mistrust; (3) return of research results; and (4) religion. Overall, there was strong interest in receiving results, which was a main motivator for participation. While participants from both health care facilities expressed distrust of research, UBP participants also expressed trust in the research enterprise. FQHC participants more frequently mentioned religion. Studies about participation in biobanks often focus on participants' race as the sole significant variable, while our work supports the importance of other demographic factors. Medical researchers must move beyond research analyses that consider the African-American population to be monolithic and value the diversity within it.
    Journal of community genetics 03/2012; 3(4):275-83. DOI:10.1007/s12687-012-0091-3