Cancer research and prevention programmes could be jeopardised by pressure from the insurance industry for people to declare the results of genetic testing, medical experts have warned.
Researchers based at the University of Cardiff, the University of Wales College of Medicine, and Heriot-Watt University in Edinburgh, are gathering evidence on whether people may be put off testing if the results have to be declared to insurance companies, writes Tony Tysome.
Insurance companies are prohibited from asking potential customers questions about genetic tests that could reveal whether they are at high risk of developing particular diseases.
Insurers are concerned that people who have had genetic tests may take out extensive cover without revealing test results showing a genetic predisposition to illnesses. The moratorium on the use of genetic-test results by insurers ends in October 2006.
The research, backed by the Wellcome Trust's biomedical ethics programme, will involve examining data on families affected by inherited diseases and asking family members for their views on genetic testing and insurance buying.
Lindsay Prior, a reader in sociology at Cardiff University and member of the research team, said: "This is an issue for patients, whose lives it affects, for clinicians, who fear that the insurance industry's attitude may deter people from having tests, and for the insurance industry, which fears adverse selection (taking out cover without revealing test results)."