People with a family history of genetic disease are often discriminated against by insurance companies and the individual’s relatives and friends, according to research published on bmj.com today. Advances in genetic testing have meant that many individuals have been able to tailor treatment and inform reproductive decisions. However, these new technologies have also caused fear about the misuse of genetic information, including discrimination, according to University of British Columbia researchers who authored the study. Such concerns led the United States to pass legislation preventing health insurance companies and employers using genetic information.

Yvonne Bombard and Michael Hayden of the University of British Columbia surveyed 233 individuals in Canada who were at risk of developing Huntington's disease. None of the group had symptoms of the disease, 167 of them underwent testing (83 had the Huntington's disease mutation, 84 did not), and 66 chose not be tested. The authors say the scale of genetic discrimination is largely unknown, but that this is the first study to focus on the issue in a genetically tested and untested population. Huntington's disease is an inherited neurodegenerative psychiatric disorder for which there is no treatment or cure. The disease usually manifests itself in mid-life and individuals suffer from mood and personality changes, chorea (involuntary movements), and cognitive decline. The disease ends in death, usually 15 to 20 years after diagnosis.
Around 40 percent of respondents said they experienced discrimination, primarily by insurance companies (1 in 3), their family and in social settings (1 in 5). There were not many reports of discrimination in employment, health care or public sector settings.
The researchers say the findings show that it is family history that appears to be the major cause of genetic discrimination not participation in genetic testing. “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 family history plays in people's lives,” they say.
The researchers maintain that many individuals and families fear being unable to cope with the predictive test results, especially given no treatment exists to slow or prevent Huntington's disease. They add that the decision to test can become a “litmus test by which relatives judge each other’s loyalty to the family” and that testing often causes disruption within the family.
“Ultimately asymptomatic individuals at genetic risk are at similar risk for discrimination because their label of having a family history of disease,” they say.