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In Their Own Words: Reports of Stigma and Genetic Discrimination by People at Risk for Huntington Disease in the International RESPOND-HD Study

Citation

Williams, JK and Erwin, C and Juhl, AR and Mengeling, M and Bombard, Y and Hayden, MR and Quaid, K and Shoulson, I and Taylor, SD and Paulsen, JS, In Their Own Words: Reports of Stigma and Genetic Discrimination by People at Risk for Huntington Disease in the International RESPOND-HD Study, American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 153B, (6) pp. 1150-1159. ISSN 1552-485X (2010) [Refereed Article]

DOI: doi:10.1002/ajmg.b.31080

Abstract

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 other daily encounters. At -risk individuals who have tested either positive or negative for the genetic expansion that causes HD, as well as at-risk persons with a 50% chance for developing the disorder but have not had DNA testing completed the International RESPOND-HD (I-RESPOND-HD) survey. One of the study's purposes was to examine perceptions of genetic stigmatization and discrimination. A total of 412 out of 433 participants provided narrative comments, and 191 provided related codable narrative data. The core theme, Information Control, refers to organizational policies and interpersonal actions. This theme was found in narrative comments describing genetic discrimination perceptions across employment, insurance, social, and other situations. These reports were elaborated with five themes: What They Encountered, What They Felt, What Others Did, What They Did, and What Happened. Although many perceptions were coded as hurtful, this was not true in all instances. Findings document that reports of genetic discrimination are highly individual, and both policy as well as interpersonal factors contribute to the outcome of potentially discriminating events. © 2010 Wiley-Liss, Inc.

Item Details

Item Type:Refereed Article
Research Division:Medical and Health Sciences
Research Group:Public Health and Health Services
Research Field:Public Health and Health Services not elsewhere classified
Objective Division:Health
Objective Group:Specific Population Health (excl. Indigenous Health)
Objective Field:Specific Population Health (excl. Indigenous Health) not elsewhere classified
UTAS Author:Taylor, SD (Professor Sandy Taylor)
ID Code:67117
Year Published:2010
Web of Science® Times Cited:19
Deposited By:Sociology and Social Work
Deposited On:2011-02-25
Last Modified:2011-04-21
Downloads:0

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