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

Supported by the Newfoundland and Labrador Centre for Applied Health Research.

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.

Keywords:

• genetics
• genetic risk
• Huntington disease (HD)
• stigma

Acknowledgements

I thank participants for their patience and trust. I also thank representatives from the provincial medical genetics clinic and the Huntington Society of Canada for their help with recruitment. This research was supported by a doctoral fellowship from the Newfoundland and Labrador Centre for Applied Health Research and the Department of Psychology, Memorial University, St. John's, NL. During the writing of this article, the author was supported by a Postdoctoral Fellowship from the Department of Epidemiology and Community Medicine and the School of Psychology, University of Ottawa, Ottawa, ON.

Notes

Supported by the Newfoundland and Labrador Centre for Applied Health Research.

¹Names and significant social details (e.g., number of siblings, exact ages) have been changed to protect anonymity.

Etchegary, H. 2005: “I have the gene, but I don't have Huntington disease”: Negotiating genetic risk. Unpublished doctoral dissertation. Memorial University, St. John's, NL.