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Perception, Experience, and Response to Genetic Discrimination in Huntington Disease: The International RESPOND-HD Study

journal contribution
posted on 2023-05-17, 04:37 authored by Erwin, C, Williams, JK, Juhl, AR, Mengeling, M, Mills, JA, Bombard, Y, Hayden, MR, Quaid, K, Shoulson, I, Taylor, SD, Paulsen, J
Genetic discrimination - defined as the denial of rights, privileges, or opportunities or other adverse treatment based solely on genetic information (including family history) - is an important concern to patients, healthcare professionals, lawmakers, and family members at risk for carrying a deleterious gene. Data from the United States, Canada, and Australia were collected from 433 individuals at risk for Huntington disease (HD) who have tested either positive or negative for the gene that causesHD and family members of affected individuals who have a 50% risk for developing the disorder but remain untested. Across all three countries, a total of 46.2% of respondents report genetic discrimination or stigma based on either their family history of HD or genetic testing for the HD gene mutation. We report on the overall incidence of discrimination and stigma in the domains of insurance (25.9%), employment (6.5%), relationships (32.9%), and other transactions (4.6%) in the United States, Canada, and Australia combined. The incidence of self-reported discrimination is less than the overall worry about the risk of discrimination, which is more prevalent in each domain. Despite a relatively low rate of perceived genetic discrimination in the areas of health insurance and employment, compared to the perception of discrimination and stigma in personal relationships, the cumulative burden of genetic discrimination across all domains of experience represents a challenge to those at risk for HD. The effect of this cumulative burden on daily life decisions remains unknown. © 2010 Wiley-Liss, Inc.

History

Publication title

American Journal of Medical Genetics Part B: Neuropsychiatric Genetics

Volume

153B

Issue

5

Pagination

1081-1093

ISSN

1552-485X

Department/School

School of Social Sciences

Publisher

Wiley-Liss, Inc

Place of publication

Online

Repository Status

  • Restricted

Socio-economic Objectives

Specific population health (excl. Indigenous health) not elsewhere classified

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