Journal article
Perceptions of genetic discrimination among people at risk for Huntington's disease: a cross sectional survey
BMJ (Online), Vol.338(7708), pp.1431-1431
06/09/2009
DOI: 10.1136/bmj.b2175
PMCID: PMC2694258
PMID: 19509425
Abstract
Objective To assess the nature and prevalence of genetic discrimination experienced by people at risk for Huntington's disease who had undergone genetic testing or remained untested.
Design Cross sectional, self reported survey.
Setting Seven genetics and movement disorders clinics servicing rural and urban communities in Canada.
Participants 233 genetically tested and untested asymptomatic people at risk for Huntington's disease (response rate 80%): 167 underwent testing (83 had the Huntington's disease mutation, 84 did not) and 66 chose not to be tested.
Main outcome measures Self reported experiences of genetic discrimination and related psychological distress based on family history or genetic test results.
Results Discrimination was reported by 93 respondents (39.9%). Reported experiences occurred most often in insurance (29.2%), family (15.5%), and social (12.4%) settings. There were few reports of discrimination in employment (6.9%), health care (8.6%), or public sector settings (3.9%). Although respondents who were aware that they carried the Huntington's disease mutation reported the highest levels of discrimination, participation in genetic testing was not associated with increased levels of genetic discrimination. Family history of Huntington's disease, rather than the result of genetic testing, was the main reason given for experiences of genetic discrimination. Psychological distress was associated with genetic discrimination (P<0.001).
Conclusions Genetic discrimination was commonly reported by people at risk for Huntington's disease and was a source of psychological distress. Family history, and not genetic testing, was the major reason for genetic discrimination.
Details
- Title: Subtitle
- Perceptions of genetic discrimination among people at risk for Huntington's disease: a cross sectional survey
- Creators
- Yvonne Bombard - University of British ColumbiaGerry Veenstra - University of British ColumbiaJan M. Friedman - University of British ColumbiaSusan Creighton - University of British ColumbiaLauren Currie - University of British ColumbiaJane S. Paulsen - Univ Iowa, Dept Psychiat, Iowa City, IA 52242 USAJoan L. Bottorff - University of British ColumbiaMichael R. Hayden - University of British ColumbiaCanadian Respond-HD Collaborative
- Resource Type
- Journal article
- Publication Details
- BMJ (Online), Vol.338(7708), pp.1431-1431
- DOI
- 10.1136/bmj.b2175
- PMID
- 19509425
- PMCID
- PMC2694258
- NLM abbreviation
- BMJ
- ISSN
- 1756-1833
- eISSN
- 1756-1833
- Publisher
- Bmj Publishing Group
- Number of pages
- 8
- Grant note
- National Institutes of Health; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA R01NS040068 / NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Institute of Neurological Disorders & Stroke (NINDS) 3 R01 NS040068 / National Institute of Neurological Disorders and Stroke; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Institute of Neurological Disorders & Stroke (NINDS) Canadian Institutes of Health Research (CIHR) Michael Smith Foundation for Health Research, and the Child and Family Research Institute; Michael Smith Foundation for Health Research
- Language
- English
- Date published
- 06/09/2009
- Academic Unit
- Psychiatry; Psychological and Brain Sciences
- Record Identifier
- 9984383305402771
Metrics
10 Record Views