Factors associated with experiences of genetic dis... [Am J Med Genet B Neuropsychiatr Genet. 2011] - PubMed result

Am J Med Genet B Neuropsychiatr Genet. 2011 Jan;156(1):19-27.
Factors associated with experiences of genetic discrimination among individuals at risk for huntington disease.

Bombard Y, Palin J, Friedman JM, Veenstra G, Creighton S, Paulsen JS, Bottorff JL, Hayden MR; The Canadian Respond‐HD Collaborative Research Group The members of the Canadian Respond‐HD collaborative research group are: Mark Guttman and Christine Giambattista, Centre for Movement Disorders; Mark Ludman, Jill Murphy and Tina Babineau‐Sturk, IWK Health Centre; Patrick MacLeod and Jennifer Rice, Victoria General Hospital; Wayne Martin and Marguerite Wieler, University of Alberta; Wendy Meschino and Clare Gibbons, North York General Hospital; Lynn Raymond and Joji Decolongon, University of British Columbia; Oksana Suchowersky and Mary‐Lou Klimek, University of Calgary..

Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.

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. © 2010 Wiley-Liss, Inc.

PMID: 21184581 [PubMed - as supplied by publisher]
Factors associated with experiences of genetic dis... [Am J Med Genet B Neuropsychiatr Genet. 2011] - PubMed result