title: Perception, experience, and response to genetic discrimination in Huntington disease: the international RESPOND-HD study.
abstract: 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 causes HD 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.
authors.affiliation: Department of Family Medicine, John P. McGovern Center for Health, Humanities and the Human Spirit, University of Texas Medical School at Houston, Houston, Texas, USA.
authors.forename: Cheryl
authors.initials: C
authors.lastname: Erwin
authors.forename: Janet K
authors.initials: JK
authors.lastname: Williams
authors.forename: Andrew R
authors.initials: AR
authors.lastname: Juhl
authors.forename: Michelle
authors.initials: M
authors.lastname: Mengeling
authors.forename: James A
authors.initials: JA
authors.lastname: Mills
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Bombard
authors.forename: Michael R
authors.initials: MR
authors.lastname: Hayden
authors.forename: Kimberly
authors.initials: K
authors.lastname: Quaid
authors.forename: Ira
authors.initials: I
authors.lastname: Shoulson
authors.forename: Sandra
authors.initials: S
authors.lastname: Taylor
authors.forename: Jane S
authors.initials: JS
authors.lastname: Paulsen
mesh_terms: D000328:Adult; D003710:Demography; D004651:Employment / Q000331:legislation & jurisprudence; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006306:Health Surveys; D006801:Humans; D006816:Huntington Disease / Q000235:genetics* / Q000523:psychology*; D007348:Insurance, Health / Q000331:legislation & jurisprudence; D007391:International Cooperation; D008297:Male; D008875:Middle Aged; D010465:Perception; D011287:Prejudice
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