Published 9 June 2009, doi:10.1136/bmj.b2175
Cite this as: BMJ 2009;338:b2175

Research

Perceptions of genetic discrimination among people at risk for Huntington’s disease: a cross sectional survey

¹ Department of Medical Genetics, University of British Columbia, Vancouver, BC, V5Z 4H4, Canada (institution where the research was conducted), ² Department of Sociology, University of British Columbia, Vancouver, BC, V6T 1Z1, Canada, ³ Departments of Psychiatry, Neurology, Psychology and Neurosciences, University of Iowa, Iowa City, Iowa, 52242, USA, ⁴ Faculty of Health and Social Development, Institute of Healthy Living and Chronic Disease Prevention, University of British Columbia Okanagan, Kelowna, BC, V1V 1V7, Canada, ⁵ Department of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, M5T 3M6, Canada

Objective To assess the nature and prevalence of genetic discrimination experienced by people at risk for Huntington’s disease who had undergone genetic testing or remained untested.

Design Cross sectional, self reported survey.

Setting Seven genetics and movement disorders clinics servicing rural and urban communities in Canada.

Participants 233 genetically tested and untested asymptomatic people at risk for Huntington’s disease (response rate 80%): 167 underwent testing (83 had the Huntington’s disease mutation, 84 did not) and 66 chose not to be tested.

Main outcome measures Self reported experiences of genetic discrimination and related psychological distress based on family history or genetic test results.

Results Discrimination was reported by 93 respondents (39.9%). Reported experiences occurred most often in insurance (29.2%), family (15.5%), and social (12.4%) settings. There were few reports of discrimination in employment (6.9%), health care (8.6%), or public sector settings (3.9%). Although respondents who were aware that they carried the Huntington’s disease mutation reported the highest levels of discrimination, participation in genetic testing was not associated with increased levels of genetic discrimination. Family history of Huntington’s disease, rather than the result of genetic testing, was the main reason given for experiences of genetic discrimination. Psychological distress was associated with genetic discrimination (P<0.001).

Conclusions Genetic discrimination was commonly reported by people at risk for Huntington’s disease and was a source of psychological distress. Family history, and not genetic testing, was the major reason for genetic discrimination.

© Bombard et al 2009
This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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