Genetic discrimination in mutation carriers identified through predictive testing for HD

In her earlier research supported by a MSFHR-BCMSF Junior Graduate Studentship Trainee Award, Yvonne Bombard completed a qualitative study of how individuals live with, and manage the potential for, genetic discrimination. Based on these findings, she adapted an Australian survey to reflect the concerns and experiences relevant to Canadians at risk for Huntington’s disease (HD). Yvonne’s work now focuses on recruiting 300 Canadian participants to complete the adapted survey. Survey results will then be analyzed to identify the nature and frequency of discrimination against Canadians who test positive for the HD gene mutation (but who have not yet developed outward symptoms) when applying for insurance, in their work environment, and in social and family settings. The findings of the study will help counsellors, patient support groups, and the health policy communities identify areas where more education or policy may be needed. Ultimately, this research may lead to better supports and improved health of individuals identified as being at risk for developing Huntington’s disease.