1. ¹Department of Medical Genetics, Centre for Molecular Medicine and Therapeutics, Child and Family Research Institute, University of British Columbia, Vancouver, British Columbia, Canada
2. ²Departments of Psychiatry, Neurology, Psychology and Neurosciences, University of Iowa, Iowa City, IA, USA
3. ³Departments of Medical Genetics and Clinical Neurosciences, University of Calgary, Calgary, Alberta, Canada
4. ⁴Departments of Medicine and Psychiatry, Centre for Addiction and Mental Health, University of Toronto, Toronto, Ontario, Canada
5. ⁵Faculty of Health and Social Development, University of British Columbia Okanagan, Kelowna, British Columbia, Canada

Correspondence: Dr MR Hayden, Department of Medical Genetics, Centre for Molecular Medicine and Therapeutics, Child and Family Research Institute, University of British Columbia, 950 West 28th Avenue, Vancouver, British Columbia, Canada V5Z 4H4. Tel: +1 604 875 3535; Fax: +1 604 875 3819; E-mail: mrh@cmmt.ubc.ca

Received 6 April 2007; Revised 19 September 2007; Accepted 20 September 2007; Published online 24 October 2007.

Abstract

It has been over 20 years since the inception of predictive testing for Huntington disease (HD), yet the social implications of knowing one's genetic risk for HD have not been fully explored. Genetic discrimination (GD) is a potential risk associated with predictive testing. Although anecdotal reports of GD have been documented, there is a paucity of research on the nature and experiences of GD in the context of HD. The purpose of this study was to describe the concerns and experiences of GD in the HD community. Semistructured interviews were conducted with 45 genetically tested and 10 untested individuals and analyzed using grounded theory methods. Our findings demonstrate that a majority of individuals were concerned about (37/55) and experienced GD (32/55) across a variety of contexts that extend beyond the traditionally examined contexts of insurance and employment to include family, social, government, and health-care domains. We describe a process of engagement with GD in which individuals formed meaningful interpretations of GD and personalized its risk and consequences in their lives. Our findings provide an insight into some of the specific processes and factors influencing engagement with GD. These results help identify areas where more education and support is needed and provide direction to genetic professionals supporting their clients as they confront issues of GD and genetic testing.