The UK's Genetics and Insurance Committee (GAIC) has recommended that insurance companies should be allowed to use the results of tests for Huntington's disease when underwriting life insurance policies for individuals with a family history of the illness. The decision follows a recent application from the Association of British Insurers (ABI), which was reviewed by patient support groups, as well as scientific and legal experts.
Huntington's disease (HD) is a severe, incurable brain disorder that affects personality, behaviour and muscle control. Symptoms usually first appear in middle-age, gradually worsening and resulting in death after 15-20 years. HD is caused by a single faulty gene, and someone with an affected parent has a 50 per cent chance of inheriting the illness themselves.
Professor John Durant, Chairman of GAIC, said the decision will mean that those with a negative test result will not be asked to pay more for life insurance because of their family history of Huntington's disease. He also said that individuals would not be asked to have a HD test before obtaining life insurance, but would be required to disclose the results of any tests performed as part of their medical care.
Over the next few months, GAIC will also consider applications relating to the use of test results for familial adenomatous polyposis (a form of colon cancer), myotonic dystrophy, a form of Alzheimer's disease, multiple endocrine neoplasia, hereditary motor and sensory neuropathy type I and hereditary breast cancer. The recently-formed Human Genetics Commission is due to begin an inquiry into the ethical and social issues surrounding the use of personal genetic data later this year.