Stigma and Genetic Risk: Perceptions of Stigma among Those at Risk for Huntington Disease (HD)*

Abstract

Advances in molecular genetics raise concerns about the potential for stigmatization of people at risk for genetic disorders. However, minimal research explores stigma from the perspective of people who live with genetic risk. Drawing upon 24 semi-structured interviews with at-risk people and their family members, this study explored perceptions of stigma in the context of Huntington disease (HD), a fatal genetic illness. Qualitative data analysis revealed four perceptions of stigma: 1) sympathy, not stigma, 2) genetic discrimination, 3) enacted stigma, and 4) dismissing stigma – ignorant others. While social others were often sympathetic towards at risk people and their affected relatives, instances of stigma were recounted in employment, insurance, clinical and social contexts. Visible HD symptomatology was a significant factor in stigma perception, and caregivers of people with HD were most likely to recount experiences with stigma. Findings suggest that both pre-test genetic counseling sessions and follow-up contact with clients include a discussion of stigma. Additionally, caregivers of people with HD might be a unique research or clinical group in the context of stigma and genetic risk.