Ethnic disparities in the perception of ethical risks from psychiatric genetic studies

Authors

  • E.A. Nwulia,

    Corresponding author
    1. Howard University College of Medicine, Washington, District of Columbia
    • Howard University, Department of Psychiatry and Behavioral Sciences, 2041 Georgia Ave. 5th Floor, NW, Washington, DC 20060.
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  • M.M. Hipolito,

    1. Howard University College of Medicine, Washington, District of Columbia
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  • S. Aamir,

    1. Howard University College of Medicine, Washington, District of Columbia
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  • W.B. Lawson,

    1. Howard University College of Medicine, Washington, District of Columbia
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  • J.I. Nurnberger Jr.,

    1. Indiana University Medical Center, Indianapolis, Indiana
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  • BiGS,

  • Consortium

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    • HoBipolar Genome Study Co-authors: John R. Kelsoe, Tiffany A. Greenwood, Caroline M. Nievergelt, Thomas B. Barrett, Rebecca McKinney, Paul D. Shilling—University of California, San Diego, CA, USA; Nicholas J. Schork, Erin N. Smith, Cinnamon S. Bloss—Scripps Genomic Medicine and Scripps Translational Science Institute, La Jolla, CA, USA; John Nurnberger, Howard J. Edenberg, Tatiana Foroud, Daniel L. Koller—Indiana University School of Medicine, Indianapolis, IN, USA; Elliot S. Gershon, Chun-Yu Liu, Judith A. Badner—University of Chicago, Chicago, IL, USA; William Scheftner—Rush University Medical Center, Chicago, IL, USA; William B. Lawson, Evaristus A. Nwulia, Maria Mananita Hipolito—Howard University, Washington, DC, USA; William Coryell—University of Iowa, Iowa City, IA, USA; John Rice—Washington University, St. Louis, MO, USA; William Byerley—University of California, San Francisco, CA, USA; Francis McMahon, Thomas G. Schulze—National Institute of Mental Health Intramural Research Program, Bethesda, MD, USA; Wade Berrettini—University of Pennsylvania, Philadelphia, PA, USA; James B. Potash, Peter P. Zandi, Pamela B. Mahon—Johns Hopkins School of Medicine, Baltimore, MD, USA; Melvin McInnis, Sebastian Zöllner, Peng Zhang—University of Michigan, Ann Arbor, MI, USA; David Craig, Szabolics Szelinger—The Translational Genomics Research Institute, Phoenix, AZ, USA.


  • How to cite this article: Nwulia EA, Hipolito MM, Aamir S, Lawson WB, Nurnberger Jr. JI, BiGS Consortium. 2011. Ethnic Disparities in the Perception of Ethical Risks From Psychiatric Genetic Studies. Am J Med Genet Part B 156:569–580.

Abstract

To examine if ethnic differences in concerns about unfavorable consequences from psychiatric genetic studies, existing between non-Hispanic Black and White populations, persist among participants in an actual genetic study of bipolar disorder. Historically, minority subjects have been less willing to participate in such studies. Participants in the US Bipolar Genome Study (BIGS) were assessed on six items of concerns in the Questionnaire on Genetic Risk (QGR). Each item had five response categories, ranging from “not at all” concerned to “very concerned.” Responses from Black (N = 188) and White participants (N = 1,065) formed the base for this analysis. Concerns about unfavorable consequences of conducting psychiatric genetic studies were prevalent in the whole sample. Concern for medical insurance was most prevalent (63.4%), followed by job concern (58.8%) and stigma (57.4%). Racial discrimination was less prevalent (28.1%). Blacks endorsed significantly stronger concerns for all consequences except the medical insurance item (P < 0.008). The most significant ethnic disparity in concerns was for racial discrimination (P < 0.0001). Associations between levels of concern and ethnicity remained significant after adjustments for other factors in multivariate models. Ethnic differences (Blacks vs. Whites) in perceived concerns about unfavorable consequences from participation persist among participants in an actual psychiatric genetic study. This suggests that other factors may play a more critical role in the decision not to participate. Future studies should investigate more comprehensive sources of barriers to consenting for ongoing psychiatric genetic studies in representative samples, incorporating assessments from non-participants as well as participants. © 2011 Wiley-Liss, Inc.

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