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Genetics and Insurance Committee approve the use of genetic test in relation to life insurance

With regard to the decision of the Genetics and Insurance Committee's decision to approve the use of the genetic test for Huntington's disease, the Huntington's Disease Association agrees that an abnormal test result is clinically and actuarially relevant. However we have considerable reservations about the way in which the insurance industry proposes to use this information and we hope that the industry will respond to our concerns in a constructive and collaborative way.

We would like to add that contrary to some reports this is not the first time that the results of genetic tests have been used for insurance purposes. The decision of the GAIC is a formal recognition of the validity of the test.

We would like to take this opportunity of highlighting the difficulties faced by people with a family history of Huntington's disease in obtaining insurance. Most people at 50% risk are offered terms with 300% loading. For many people this makes life insurance unaffordable. People with an abnormal test result rarely apply for insurance products because of the likelihood that they will be refused. Usually only people with a normal test result will be offered terms at a standard rate.

The Government, insurance companies and patient organisations must work together to ensure that people at risk of inherited disease should be able to protect themselves and their families by being able to obtain insurance at affordable rates.

• Press Release