Insurers get gene testing guidance

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PEOPLE WHO take genetic tests have the right to keep the results from life insurance companies under government proposals to prevent the birth of an uninsurable "genetic underclass".

The right, however, will extend only until the time when insurance companies can show that a genetic test has a proven ability to predict a person's premature death, government ministers said yesterday.

The Government refused to ban insurance companies from using genetic tests but does not want testing to become a precondition of a policy.

Under the new proposals, people will also have a right to appeal against decisions where insurance is denied. An expert body is to be set up early next year to assess whether a genetic test can provide companies with meaningful information on a person's insurance liability.

Lord Sainsbury, minister for Science at the Department of Trade and Industry, said the Government has reached a voluntary agreement with insurance companies to ensure that all genetic tests are individually validated before they can be used by the industry.

The aim is to assess whether there is a sound scientific and actuarial basis for the results of a test to be used to assess a person's application for life insurance, he said.

"Our objective is to put in place a robust system that will meet both the needs of consumers and the insurance industry and which will be responsive to developments in genetic science in the future," Lord Sainsbury said.

Tessa Jowell, the Health minister, said genetic tests should be used by the insurance industry only if the tests are able to predict accurately when a person is likely to die. "It would be perfectly OK to refuse the results of tests that have not been validated," she said.

The measures are the Government's response to recommendations by its Human Genetics Advisory Committee (HGAC) which said last December there should be a two-year moratorium on the use of genetic data by insurance companies.

Although the Government has rejected the moratorium, on the ground that its validation procedure will protect the public, the HGAC still welcomes the proposals, said Professor Cairns Aitken of Edinburgh University and the chairman of the commission's insurance group.

"The Government had taken on our recommendations. Although we could not find evidence of discrimination, we felt there was a public perception of discrimination. The reason why the HGAC was set up was to ensure that a genetic underclass does not happen," Professor Aitken said.

The Association of British Insurers has identified eight disorders where genetic tests can be useful for insurers, such as Huntington's disease, Alzheimer's and hereditary breast cancer. It said that insurers should be able to have access to relevant medical information concerning a potential customer, including details of family history and genetic tests.

Ms Jowell said she had concerns about whether any of these tests were relevant and accurate enough for insurance purposes. "Each of these eight tests will have to be subject to the validation procedure we are outlining," she said.

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