Beyond the patient: The broader impact of genetic discrimination among individuals at risk of Huntington disease

Authors

  • Yvonne Bombard,

    1. Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada
    2. Yale University, Department of Epidemiology and Public Health (Division of Health Policy and Administration), New Haven, Connecticut
    3. Memorial Sloan Kettering Cancer Center, Center for Health Policy and Outcomes, New York, New York
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    • Yvonne Bombard and JoAnne Palin contributed equally to this article.

  • JoAnne Palin,

    1. Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada
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    • Yvonne Bombard and JoAnne Palin contributed equally to this article.

  • Jan M. Friedman,

    1. Children's & Women's Hospital of British Columbia, Vancouver, British Columbia, Canada
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  • Gerry Veenstra,

    1. Department of Sociology, University of British Columbia, Vancouver, British Columbia, Canada
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  • Susan Creighton,

    1. Children's & Women's Hospital of British Columbia, Vancouver, British Columbia, Canada
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  • Joan L. Bottorff,

    1. Faculty of Health and Social Development, University of British Columbia Okanagan, Kelowna, British Columbia, Canada
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  • Michael R. Hayden,

    Corresponding author
    1. Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada
    • Department of Medical Genetics, Centre for Molecular Medicine & Therapeutics, Child & Family Research Institute, University of British Columbia, 950 West 28th Avenue, Vancouver, BC, Canada V5Z 4H4.
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  • The Canadian Respond-HD Collaborative Research Group

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    • The members of the Canadian Respond-HD collaborative research group are: Mark Guttman & Christine Giambattista, Centre for Movement Disorders; Mark Ludman, Jill Murphy & Tina Babineau-Sturk, IWK Health Centre; Patrick MacLeod & Jennifer Rice, Victoria General Hospital; Wayne Martin & Marguerite Wieler, University of Alberta; Wendy Meschino & Clare Gibbons, North York General Hospital; Lynn Raymond & Joji Decolongon, University of British Columbia; Oksana Suchowersky & Mary-Lou Klimek, University of Calgary.


  • Disclosures: All authors report no conflicts of interest, as per AJOB policy.

  • How to Cite this Article: Bombard Y, Palin J, Friedman JM, Veenstra G, Creighton S, Bottorff JL, Hayden MR, The Canadian Respond-HD Collaborative Research Group. 2012. Beyond the Patient: The Broader Impact of Genetic Discrimination Among Individuals at Risk of Huntington Disease. Am J Med Genet Part B 159B:217–226.

Abstract

We aimed to address gaps in current understanding of the scope and impact of discrimination, by examining a cohort of individuals at-risk for Huntington disease (HD), to describe the prevalence of concern for oneself and one's family in multiple domains; strategies used to mitigate discrimination; and the extent to which concerns relate to experiences. We conducted a cross-sectional survey of 293 individuals at-risk for HD (80% response rate); 167 respondents were genetically tested and 66 were not. Fear of discrimination was widespread (86%), particularly in the insurance, family and social settings. Approximately half of concerned individuals experienced discrimination (40–62%, depending on genetic status). Concern was associated with “keeping quiet” about one's risk of HD or “taking action to avoid” discrimination. Importantly, concern was highly distressing for some respondents (21% for oneself; 32% for relatives). Overall, concerned respondents with high education levels, who discovered their family history at a younger age, and those who were mutation-positive were more likely to report experiences of discrimination than others who were concerned. Concerns were rarely attributed to genetic test results alone. Concern about genetic discrimination is frequent among individuals at-risk of HD and spans many settings. It influences behavioral patterns and can result in high levels of self-rated distress, highlighting the need for practice and policy interventions. © 2012 Wiley Periodicals, Inc.

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