Journal article
Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease
European journal of human genetics : EJHG, Vol.16(3), pp.279-289
03/01/2008
DOI: 10.1038/sj.ejhg.5201937
PMCID: PMC3806301
PMID: 17957229
Abstract
It has been over 20 years since the inception of predictive testing for Huntington disease (HD), yet the social implications of knowing one's genetic risk for HD have not been fully explored. Genetic discrimination (GD) is a potential risk associated with predictive testing. Although anecdotal reports of GD have been documented, there is a paucity of research on the nature and experiences of GD in the context of HD. The purpose of this study was to describe the concerns and experiences of GD in the HD community. Semistructured interviews were conducted with 45 genetically tested and 10 untested individuals and analyzed using grounded theory methods. Our findings demonstrate that a majority of individuals were concerned about (37/55) and experienced GD (32/55) across a variety of contexts that extend beyond the traditionally examined contexts of insurance and employment to include family, social, government, and health-care domains. We describe a process of engagement with GD in which individuals formed meaningful interpretations of GD and personalized its risk and consequences in their lives. Our findings provide an insight into some of the specific processes and factors influencing engagement with GD. These results help identify areas where more education and support is needed and provide direction to genetic professionals supporting their clients as they confront issues of GD and genetic testing.
Details
- Title: Subtitle
- Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease
- Creators
- Yvonne Bombard - University of British ColumbiaElizabeth Penziner - University of IowaOksana Suchowersky - University of CalgaryMark Guttman - Centre for Addiction and Mental HealthJane S. Paulsen - University of IowaJoan L. Bottorff - University of British ColumbiaMichael R. Hayden - University of British Columbia
- Resource Type
- Journal article
- Publication Details
- European journal of human genetics : EJHG, Vol.16(3), pp.279-289
- Publisher
- Springer Nature
- DOI
- 10.1038/sj.ejhg.5201937
- PMID
- 17957229
- PMCID
- PMC3806301
- ISSN
- 1018-4813
- eISSN
- 1476-5438
- Number of pages
- 11
- Language
- English
- Date published
- 03/01/2008
- Academic Unit
- Psychiatry; Psychological and Brain Sciences
- Record Identifier
- 9984383280602771
Metrics
6 Record Views