A study by researchers at the University of British Columbia in Canada and published in the British Medical Journal has shown that individuals at risk of Huntington's disease (HD) are often discriminated against by insurance companies, and also by their own relatives and friends. They also found that this discrimination was based on family history of the disease rather than any genetic test results.
HD is an inherited neurodegenerative disease leading to personality changes, involuntary movements, cognitive decline and eventually death up to 20 years after diagnosis. Symptoms do not usually become apparent until middle age, which is often after the person has had children of their own.
Predictive genetic testing for this disease has been available since the late 1980s, but testing can be a sensitive issue in families as it increases the potential for genetic discrimination and there is currently no treatment or cure for people who carry the HD gene mutation.
To look at the prevalence of genetic discrimination in tested and untested individuals, the team surveyed 233 people who were at risk of developing HD, but who showed no symptoms. 167 underwent testing (approximately half carried the mutation and half did not) and 66 decided against testing. They found that 40 per cent experienced discrimination, mostly by insurance companies, but that the main reason for this discrimination was having a family history of the disease rather than having the genetic test. The authors add that many families fear not being able to cope with the results and that an individual's decision to undergo testing can cause disruptions within the family.
The authors concluded that 'ultimately asymptomatic individuals at genetic risk are at a similar risk for discrimination because their label of having a family history of disease'
Professor Aad Tibben, from Leiden University Medical Centre in the Netherlands, wrote of the advantages of testing in the accompanying editorial 'Genetic testing gives people at risk the opportunity to take more responsibility for their lives, their health and their future'. He added that 'in general, the test brings relief from uncertainty'. Genetic testing also enables patients to make informed reproductive decisions.
Jo-Anne Watton, who heads the Individual and Family Services for Huntington Society in Canada, told a Canadian newspaper that fears about discrimination reduce the number of individuals tested for the disease and, hence, those available to aid research into possible treatments.