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People With Huntington's Report Discrimination
Date:6/12/2009

Businesses, the public, even families are involved, study finds

FRIDAY, June 12 (HealthDay News) -- As if having a family history of an incurable genetic disease isn't worry enough, people with a family history of Huntington's disease report being discriminated against by insurance companies, relatives and in social settings, according to a new study.

Yvonne Bombard and colleagues at the University of British Columbia surveyed 233 people in Canada who were at risk of developing Huntington's disease, a degenerative disorder that leads to involuntary movements, personality changes, psychiatric issues and loss of intellectual functioning.

People with Huntington's disease usually begin to show symptoms in midlife and die 15 to 20 years after diagnosis. There are no treatments to slow the disease, the researchers noted in their report, published in the June 10 issue of BMJ.

At the time of the study, none of the participants had symptoms of the disease. Before the study, 167 had been tested to determine if they carried the Huntington's disease gene mutation; 83 had it and 84 did not. The remaining 66 chose not to be tested.

Nearly 40 percent of the study participants reported some form of discrimination, the authors found. About 30 percent said it came from insurance companies, usually in the form of rejections by life or disability companies, higher premiums or requests to take a predictive test.

Discrimination came from family members about 15 percent of the time, and about 12 percent said they'd been discriminated against in a social setting, usually over their choice to have children or to enter into a relationship, the researchers noted.

Huntington's is a familial disease, passed from parent to child through a gene mutation. A child of someone with Huntington's has a 50-50 chance of inheriting the gene, according to the U.S. National Institute of Neurological Disorders and S
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