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Engaging African-Americans about biobanks and the return of research results

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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.

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Acknowledgments

We thank Amy Lemke for her role in study design, training, and coding; Connie Robinson and Melanie Brown for serving as focus group facilitators; and Ellen Wright Clayton and Elizabeth Heitman for serving as expert consultants. The project was funded by the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1RR024999.

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Authors and Affiliations

  1. Department of Anthropology, University of Chicago, 1126 E 59th St, Chicago, IL, 60637, USA

    Colin ME Halverson

  2. Department of Pediatrics, University of Chicago, 5841 S Maryland Ave MC 6082, Chicago, IL, 60637, USA

    Lainie Friedman Ross

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  1. Colin ME Halverson
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  2. Lainie Friedman Ross
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Correspondence to Lainie Friedman Ross.

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Halverson, C.M., Ross, L.F. Engaging African-Americans about biobanks and the return of research results. J Community Genet 3, 275–283 (2012). https://doi.org/10.1007/s12687-012-0091-3

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  • DOI: https://doi.org/10.1007/s12687-012-0091-3

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