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Attitudes of non-African American focus group participants toward return of results from exome and whole genome sequencing

Authors

  • Joon-Ho Yu,

    Corresponding author
    1. Department of Pediatrics, University of Washington, Seattle, Washington
    • Correspondence to:

      Joon-Ho Yu, M.P.H., Ph.D., Department of Pediatrics, School of Medicine, University of Washington, Box 356320, 1959 NE Pacific St. HSB RR349, Seattle, WA 98195.

      E-mail: joonhoyu@u.washington.edu

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  • Julia Crouch,

    1. Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington
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  • Seema M. Jamal,

    1. Department of Pediatrics, University of Washington, Seattle, Washington
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  • Michael J. Bamshad,

    1. Department of Pediatrics, University of Washington, Seattle, Washington
    2. Department of Genome Sciences, University of Washington, Seattle, Washington
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  • Holly K. Tabor

    1. Department of Pediatrics, University of Washington, Seattle, Washington
    2. Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington
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  • The authors declared that have no conflicts of interest to disclose.

Abstract

Exome sequencing and whole genome sequencing (ES/WGS) present individuals with the opportunity to benefit from a broad scope of genetic results of clinical and personal utility. Yet, it is unclear which genetic results people want to receive (i.e., what type of genetic information they want to learn about themselves) or conversely not receive, and how they want to receive or manage results over time. Very little is known about whether and how attitudes toward receiving individual results from ES/WGS vary among racial/ethnic populations. We conducted 13 focus groups with a racially and ethnically diverse parent population (n = 76) to investigate attitudes toward return of individual results from WGS. We report on our findings for non-African American (non-AA) participants. Non-AA participants were primarily interested in genetic results on which they could act or “do something about.” They defined “actionability” broadly to include individual medical treatment and disease prevention. The ability to plan for the future was both a motivation for and an expected benefit of receiving results. Their concerns focused on the meaning of results, specifically the potential inaccuracy and uncertainty of results. Non-AA participants expected healthcare providers to be involved in results management by helping them interpret results in the context of their own health and by providing counseling support. We compare and contrast these themes with those we previously reported from our analysis of African American (AA) perspectives to highlight the importance of varying preferences for results, characterize the central role of temporal orientation in framing expectations about the possibility of receiving ES/WGS results, and identify potential avenues by which genomic healthcare disparities may be inadvertently perpetuated. © 2014 Wiley Periodicals, Inc.

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