People With Huntington's Report Discrimination

FRIDAY June 12, 2009 -- 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 Stroke.

The researchers also reported that about 7 percent of the study participants said they'd faced discrimination in employment, nearly 9 percent said they felt it in a health-care setting and about 4 percent said they had been discriminated against in a public setting.

Family members who already knew they carried the mutation reported the highest levels of discrimination, although getting the genetic testing was not associated with more discrimination, the study noted.

Those who had experienced discrimination reported psychological distress because of it.

Despite advances in genetic testing, fear of discrimination has prevented some from having the testing done or participating in genetic research, the authors explained.

Given that much of the discrimination seems to come from within the family, "clearly, there is a need to shift the current focus of genetic discrimination as a genetic testing issue to one that equally highlights the role that family history plays in people's lives," Bombard and her colleagues wrote.

In May 2008, the U.S. Congress passed the Genetic Information Nondiscrimination Act to prevent the use of genetic information by health insurance companies or employers.

An accompanying editorial by Aad Tibben of Leiden University in the Netherlands discusses the benefits of genetic testing, saying it "gives a person at risk the opportunity to take more responsibility and control over their life, their health and their future."

"In general, the test brings relief from uncertainty and more control over people's future life, and no serious adverse consequences have been reported," Tibben wrote.

More information

The U.S. National Institute of Neurological Disorders and Stroke has more about Huntington's disease.

Posted: June 2009


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