Authors
Cheryl Erwin, Janet K Williams, Andrew R Juhl, Michelle Mengeling, James A Mills, Yvonne Bombard, Michael R Hayden, Kimberly Quaid, Ira Shoulson, Sandra Taylor, Jane S Paulsen, I‐RESPOND‐HD Investigators of the Huntington Study Group
Publication date
2010/7
Journal
American Journal of Medical Genetics Part B: Neuropsychiatric Genetics
Volume
153
Issue
5
Pages
1081-1093
Publisher
Wiley Subscription Services, Inc., A Wiley Company
Description
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 …
Total citations
200920102011201220132014201520162017201820192020202120222023202412261029235345333
Scholar articles
C Erwin, JK Williams, AR Juhl, M Mengeling, JA Mills… - American Journal of Medical Genetics Part B …, 2010