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    Perception, Experience, and Response to Genetic Discrimination in Huntington's Disease: The Australian Results of the International RESPOND-HD Study

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    Author
    Goh, AMY; Chiu, E; Yastrubetskaya, O; Erwin, C; Williams, JK; Juhl, AR; Paulsen, JS
    Date
    2013-02-01
    Source Title
    GENETIC TESTING AND MOLECULAR BIOMARKERS
    Publisher
    MARY ANN LIEBERT, INC
    University of Melbourne Author/s
    Yastrubetskaya, Olga; Chiu, Edmond; Goh, Anita
    Affiliation
    Psychiatry
    Metadata
    Show full item record
    Document Type
    Journal Article
    Citations
    Goh, A. M. Y., Chiu, E., Yastrubetskaya, O., Erwin, C., Williams, J. K., Juhl, A. R. & Paulsen, J. S. (2013). Perception, Experience, and Response to Genetic Discrimination in Huntington's Disease: The Australian Results of the International RESPOND-HD Study. GENETIC TESTING AND MOLECULAR BIOMARKERS, 17 (2), pp.115-121. https://doi.org/10.1089/gtmb.2012.0288.
    Access Status
    Access this item via the Open Access location
    URI
    http://hdl.handle.net/11343/33098
    DOI
    10.1089/gtmb.2012.0288
    Open Access at PMC
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3552166
    Description

    C1 - Journal Articles Refereed

    Abstract
    AIMS: This study examines elements of genetic discrimination among an at-risk, clinically undiagnosed Huntington's disease (HD) population. METHODS: Sixty at-risk individuals, either positive or negative for the HD genetic mutation, completed a survey regarding their experiences of genetic discrimination, adverse and unfair treatment, and knowledge about existing laws and policies surrounding genetic discrimination. RESULTS: Sixty eight percent of participants reported feeling "Great benefit" from knowing their genetic test results. Reported benefits of knowledge included planning for the future, making decisions, and many individuals found meaning in active participation in the HD community and in advocating for themselves or families at risk for HD. Many individuals found personal meaning and a sense of community from knowledge of this information and from the ability to participate in research. Despite these positive feelings toward gene testing, results demonstrated that 33% of participants perceived experiences of genetic discrimination, which occurred repeatedly and caused great self-reported distress. Significantly, more gene-positive respondents reported experiencing incidents of genetic discrimination, compared to gene-negative respondents. At least 58 separate incidents of discrimination were reported, the number of incidents ranged from 1 to 10, with 45% of individuals (9/20 respondents) indicating more than one event. Of the most significant events of discrimination, 58% were related to insurance, 21% to employment, 16% to transactions of daily life, and 5% to relationships. CONCLUSION: Results contribute toward validation of empirical data regarding genetic discrimination.
    Keywords
    Medical Genetics (excl. Cancer Genetics); Psychiatry (incl. Psychotherapy); Inherited Diseases (incl. Gene Therapy); Mental Health

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