title: Factors associated with experiences of genetic discrimination among individuals at risk for Huntington disease.
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.
authors.affiliation: Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Bombard
authors.forename: JoAnne
authors.initials: J
authors.lastname: Palin
authors.forename: Jan M
authors.initials: JM
authors.lastname: Friedman
authors.forename: Gerry
authors.initials: G
authors.lastname: Veenstra
authors.forename: Susan
authors.initials: S
authors.lastname: Creighton
authors.forename: Jane S
authors.initials: JS
authors.lastname: Paulsen
authors.forename: Joan L
authors.initials: JL
authors.lastname: Bottorff
authors.forename: Michael R
authors.initials: MR
authors.lastname: Hayden
mesh_terms: D000328:Adult; D017677:Age Distribution; D005260:Female; D020022:Genetic Predisposition to Disease; D006801:Humans; D006816:Huntington Disease / Q000235:genetics* / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D011287:Prejudice; D012307:Risk Factors; D057566:Self Report; D011795:Surveys and Questionnaires; D055815:Young Adult