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Managing genetic discrimination: Strategies used by individuals found to have the Huntington disease mutation

Authors

  • Y Bombard,

    1. Centre for Molecular Medicine and Therapeutics, Child and Family Research Institute, Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada
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  • E Penziner,

    1. Departments of Psychiatry, Neurology, Psychology and Neurosciences, University of Iowa, Iowa City, Iowa, USA
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  • J Decolongon,

    1. Huntington Disease Medical Clinic, Department of Medical Genetics, UBC Hospital, University of British Columbia, Vancouver, British Columbia
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  • MLN Klimek,

    1. Departments of Medical Genetics and Clinical Neurosciences, University of Calgary, Calgary Alberta
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  • S Creighton,

    1. Provincial Medical Genetics Programme, Children’s and Women’s Health Centre of British Columbia, Vancouver
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  • O Suchowersky,

    1. Departments of Medical Genetics and Clinical Neurosciences, University of Calgary, Calgary Alberta
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  • M Guttman,

    1. Centre for Movement Disorders, Markham, Ontario
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  • JS Paulsen,

    1. Departments of Psychiatry, Neurology, Psychology and Neurosciences, University of Iowa, Iowa City, Iowa, USA
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  • JL Bottorff,

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

    Corresponding author
    1. Centre for Molecular Medicine and Therapeutics, Child and Family Research Institute, Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada
      Dr Michael R. Hayden, Centre for Molecular Medicine and Therapeutics, Child and Family Research Institute, Department of Medical Genetics, University of British Columbia, Room 3024–950, West 28th Avenue, Vancouver, British Columbia, V5Z 4H4 Canada.
      Tel.: 604 875 3535;
      fax: 604 875 3819;
      e-mail: mrh@cmmt.ubc.ca
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Dr Michael R. Hayden, Centre for Molecular Medicine and Therapeutics, Child and Family Research Institute, Department of Medical Genetics, University of British Columbia, Room 3024–950, West 28th Avenue, Vancouver, British Columbia, V5Z 4H4 Canada.
Tel.: 604 875 3535;
fax: 604 875 3819;
e-mail: mrh@cmmt.ubc.ca

Abstract

The introduction of predictive testing for Huntington disease (HD) over 20 years ago has led to the advent of a new group of individuals found to have the HD mutation that are currently asymptomatic, yet destined in all likelihood to become affected at some point in the future. Genetic discrimination, a social risk associated with predictive testing, is the differential treatment of individuals based on genotypic difference rather than physical characteristics. While evidence for genetic discrimination exists, little is known about how individuals found to have the HD mutation cope with the potential for or experiences of genetic discrimination. The purpose of this study was to explore how individuals found to have the HD mutation manage the risk and experience of genetic discrimination. Semi-structured individual interviews were conducted with 37 individuals who were found to have the HD mutation and analysed using grounded theory methods. The findings suggest four main strategies: “keeping low”, minimizing, pre-empting and confronting genetic discrimination. Strategies varied depending on individuals’ level of engagement with genetic discrimination and the nature of the experience (actual experience of genetic discrimination or concern for its potential). This exploratory framework may explain the variation in approaches and reactions to genetic discrimination among individuals living with an increased risk for HD and may offer insight for persons at risk for other late-onset genetic diseases to cope with genetic discrimination.

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