A research published on bmj.com reports that individuals with a family history of genetic disease are frequently discriminated by their relatives, friends and also by insurance companies.
Many individuals have been able to adapt treatment and inform reproductive decisions thanks to the developments in genetic testing. The authors explain that on the other hand, these dominant new technologies have also raised concern over the misuse of genetic information as well as discrimination.
In response to such fear, the US Government has passed legislation to prevent health insurance companies and employers from using genetic information.
Drs Yvonne Bombard and Michael Hayden are the lead authors based at the University of British Columbia. They explain “the scale of genetic discrimination is largely unknown and this is the first study to focus on this issue in a genetically tested and untested population.”
The survey included 233 individuals in Canada who were at risk of developing Huntington’s disease. None of them had symptoms of the disease. From the 167 who underwent testing, 83 had the Huntington’s disease mutation, and 84 did not. The remaining 66 individual chose not to be tested.
Huntington’s disease is a hereditary neurodegenerative psychiatric disorder. There is no treatment or cure for it. The disease typically manifests itself in mid-life and individuals suffer from mood and personality changes, involuntary movements (chorea), and cognitive decline. Usually fifteen to twenty years after diagnosis, the disease ends in death.
The respondents reported they experienced discrimination in forty percent of the cases, mostly by insurance companies (one in three) and in their family and social environment (one in five). An interesting fact was the low number of reports of discrimination in employment, health care or public sector settings.
The results of the study point out that family history seems to be the major cause of genetic discrimination and not participation in genetic testing. The researchers conclude that “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.”
The authors claim that since there is no treatment available to slow down or prevent Huntington’s disease, many individuals and families dread being incapable to deal with the predictive test results. They add that the decision to test can become a “litmus test by which relatives judge each other’s loyalty to the family”. Testing often causes disruption within the family.
The authors write in conclusion that “ultimately asymptomatic individuals at genetic risk are at similar risk for discrimination because their label of having a family history of disease.”
In an associated editorial, Professor Aad Tibben from Leiden University in the Netherlands supports the benefits of genetic testing and claims 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.”
Professor Tibben is interested in the study’s findings associated to genetic discrimination within the family and social relationships. He is of the opinion that further information is required into the dynamics of these fields.
“Perceptions of genetic discrimination among people at risk for Huntington’s disease: a cross sectional survey”
Yvonne Bombard, postdoctoral fellow,Gerry Veenstra, associate professor, Jan M Friedman, professor,Susan Creighton, genetic counsellor and clinical assistant professor,1Lauren Currie, research assistant,Jane S Paulsen, professor,Joan L Bottorff, professor and director, Michael R Hayden, Canada Research chairin Human Genetics and Molecular Medicine, University Killam professor the Canadian Respond-HD Collaborative Research Group
doi/10.1136/bmj.b2175
Written By Stephanie Brunner (B.A.)