Journal article
Perception, experience, and response to genetic discrimination in Huntington's disease: The Australian results of the international RESPOND-HD study
AMY Goh, E Chiu, O Yastrubetskaya, C Erwin, JK Williams, AR Juhl, JS Paulsen
Genetic Testing and Molecular Biomarkers | Published : 2013
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..
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Awarded by National Human Genome Research Institute
Funding Acknowledgements
The authors acknowledge the HD community who participated in the project. The study was supported by the National Human Genome Institute Grant No. R01 HG003330, J.S. Paulsen, Principal Investigator, and also by a grant from the Legal Services Board, Victoria, Anita Goh, Principal Investigator. We also acknowledge Joy Preston and Professor Nicola Lautenschlager, Head of Academic Unit for Psychiatry of Old Age, Department of Psychiatry, The University of Melbourne.