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

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.