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Discrimination Perceived in Huntington’s Disease

Last Updated: June 10, 2009.

People at risk for having the Huntington's disease mutation frequently experience discrimination when buying insurance and in family, social and other situations, according to a study published June 9 in BMJ.

WEDNESDAY, June 10 (HealthDay News) -- People at risk for having the Huntington's disease mutation frequently experience discrimination when buying insurance and in family, social and other situations, according to a study published June 9 in BMJ.

Yvonne Bombard, Ph.D., of the University of British Columbia in Vancouver, Canada, and colleagues administered surveys to 167 genetically-tested subjects and 66 untested subjects at risk for Huntington's disease to determine the nature and extent of discrimination against people with the disease risk who are tested or untested. Of the tested subjects, 83 had the Huntington's disease mutation and 84 did not. The survey elicited reports of discrimination and psychological stress, which were the main outcome measures.

The researchers found that 93 of the subjects (39.9 percent) reported incidents of discrimination, including discrimination in the purchase of insurance (29.2 percent), family relations (15.5 percent), social relations (12.4 percent), health care (8.6 percent), employment (6.9 percent), and public sector settings (3.9 percent). Subjects who had tested positive for the disease mutation reported the highest discrimination rate. When discrimination occurred, family history, not the genetic testing, was the reason given most often.

"Despite previous claims that genetic discrimination is rare, discrimination was reported by nearly 40 percent of the individuals we sampled. Genetic discrimination occurred most often in reference to life and disability insurance, and among family and friends (12.4 to 29.2 percent)," the authors write.

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