Journal article
Factors associated with experiences of genetic discrimination among individuals at risk for Huntington disease
American journal of medical genetics. Part B, Neuropsychiatric genetics, Vol.156B(1), pp.19-27
01/2011
DOI: 10.1002/ajmg.b.31130
PMCID: PMC3860279
PMID: 21184581
Abstract
The purpose of this study was to identify factors that are associated with experiencing genetic discrimination (GD) among individuals at risk for Huntington disease (HD). Multivariable logistic regression analysis was used to examine factors associated with experiencing GD in data from a cross-sectional, self-report survey of 293 individuals at risk for HD. The study sample comprised 167 genetically tested respondents, and 66 who were not tested (80% response rate). Overall, individuals who learn they are at risk for HD at a younger age (OR = 3.1; 95% CI: 1.5–6.2;
P
= 0.002), are mutation-positive (OR = 2.8; 95% CI: 1.4–6.0;
P
= 0.006), or are highly educated (OR = 2.7; 95% CI: 1.4–5.1;
P
= 0.002) are more likely to experience GD, particularly in insurance, family, and social settings. Further, younger age was associated with discrimination in insurance (OR = 0.97; 95% CI: 0.94–1.00;
P
= 0.038). This study provides evidence that some people who are at risk for HD were more likely to experience GD than others. Individuals who learned they are at risk for HD at a younger age and those who are mutation-positive were more likely to experience GD, particularly in insurance, family, and social settings. Younger individuals were more likely to experience discrimination in the insurance setting. Overall, highly educated individuals were also more likely to report discrimination. These results provide direction for clinical and family discussions, counseling practice, and policy aimed at mitigating experiences of GD.
Details
- Title: Subtitle
- Factors associated with experiences of genetic discrimination among individuals at risk for Huntington disease
- Creators
- Yvonne Bombard - University of British ColumbiaJoAnne Palin - University of British ColumbiaJan M. Friedman - Children's & Women's Health Centre of British ColumbiaGerry Veenstra - University of British ColumbiaSusan Creighton - Children's & Women's Health Centre of British ColumbiaJane S. Paulsen - University of IowaJoan L. Bottorff - University of British ColumbiaMichael R. Hayden - University of British ColumbiaCanadian Respond-HD Collaborative
- Resource Type
- Journal article
- Publication Details
- American journal of medical genetics. Part B, Neuropsychiatric genetics, Vol.156B(1), pp.19-27
- DOI
- 10.1002/ajmg.b.31130
- PMID
- 21184581
- PMCID
- PMC3860279
- ISSN
- 1552-4841
- eISSN
- 1552-485X
- Grant note
- R01 NS040068 || NS / National Institute of Neurological Disorders and Stroke : NINDS
- Language
- English
- Date published
- 01/2011
- Academic Unit
- Psychiatry; Psychological and Brain Sciences
- Record Identifier
- 9984383297402771
Metrics
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