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

troke.

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.


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