Title

Perception, experience, and response to genetic discrimination in Huntington disease: the international RESPOND-HD study

Document Type

Article

Peer Reviewed

1

Publication Date

7-1-2010

NLM Title Abbreviation

Am J Med Genet B Neuropsychiatr Genet

Journal/Book/Conference Title

American journal of medical genetics.Part B, Neuropsychiatric genetics

PubMed ID

20468061

DOI of Published Version

10.1002/ajmg.b.31079

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.

Keywords

Adult, Demography, Employment/legislation & jurisprudence, Female, Health Knowledge, Attitudes, Practice, Health Surveys, Humans, Huntington Disease/genetics/psychology, Insurance, Health/legislation & jurisprudence, International Cooperation, Male, Middle Aged, Perception, Prejudice

Published Article/Book Citation

American journal of medical genetics.Part B, Neuropsychiatric genetics, 153B:5 (2010) pp.1081-1093. DOI:10.1002/ajmg.b.31079.

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URL

https://ir.uiowa.edu/nursing_pubs/1445