Study focuses on genetic discrimination
A Canadian study finds people with a family history of genetic disease are at risk of discrimination from insurance companies and even relatives and friends.
Yvonne Bombard and Michael Hayden of the University of British Columbia said the scale of genetic discrimination is largely unknown and their study is the first to focus on the issue in a genetically tested and untested population.
The authors 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 and 66 chose not be tested.
Huntington’s disease is an inherited neurodegenerative psychiatric disorder for which there is no treatment or cure.
Approximately 40 percent of respondents said they experienced discrimination — primarily by insurance companies, their family and in social settings. Interestingly, said the scientists, there were not many reports of discrimination in employment, health care or public sector settings.
The findings show it is family history that appears to be the major cause of genetic discrimination and not participation in genetic testing. The authors 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 study appeared in the June 9 online edition of the British Medical Journal.