Perception, experience, and response to genetic discrimination in Huntington disease: the international RESPOND-HD study.
Williams, Janet K
Juhl, Andrew R
Mills, James A
Hayden, Michael R
Paulsen, Jane S;
American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics 2010 Jul; 153B(5): 1081-93
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.
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Disease; Discrimination; Employment; Family Members; Genetic Discrimination; Genetic Information; Genetic Testing; Health; Health Insurance; Huntington Disease; Insurance; Life; Mutation; Patients; Rights; Risk; Genetic Screening / Genetic Testing; Occupational Health; Neurosciences and Mental Health Therapies; Economics of Health Care;
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In their own words: reports of stigma and genetic discrimination by people at risk for Huntington disease in the International . Williams, Janet K; Erwin, Cheryl; Juhl, Andrew R; Mengeling, Michelle; Bombard, Yvonne; Hayden, Michael R; Quaid, Kimberly; Shoulson, Ira; Taylor, Sandra; Paulsen, Jane S; (2010-09)Genetic discrimination may be experienced in the day-to-day lives of people at risk for Huntington disease (HD), encompassing occurrences in the workplace, when seeking insurance, within social relationships, and during ...
Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease. Penziner, Elizabeth; Williams, Janet K.; Erwin, Cheryl; Bombard, Yvonne; Wallis, Anne; Beglinger, Leigh J.; Hayden, Michael R.; Paulsen, Jane S. (2008-04-05)
Personal factors associated with reported benefits of Huntington disease family history or genetic testing. Williams, Janet K; Erwin, Cheryl; Juhl, Andrew; Mills, James; Brossman, Bradley; Paulsen, Jane S; (2010-10)A family history of Huntington disease (HD) or receiving results of HD predictive genetic testing can influence individual well-being, family relationships, and social interactions in positive and negative ways. The aim ...