Scientific advisers to the Government are furious with the insurance industry for breaking what they thought was an unwritten agreement to delay the introduction of such tests.
Ministers said last year that insurers had agreed not to use information about genetic tests until the government Genetics and Insurance Committee had validated the tests. However, it has emerged that the industry has continued to gather genetic information from prospective customers if they have undergone one of 10 tests for seven inherited disorders.
Professor Martin Bobrow, a distinguished medical geneticist at Cambridge University and a former member of the Human Genetics Advisory Commission (HGAC), yesterday condemned the insurance industry for going back on promises he understood were made when the commission gave its advice to government.
"I was given covert assurances by some people that although no moratorium was going to be pronounced in public that there was an unwritten agreement that the ABI [Association of British Insurers] would stop using genetic testing until after the review process. It is now quite clear that either there was no such agreement or the ABI's members decided to ignore it," Professor Bobrow said.
Members of the HGAC wanted a two-year moratorium on testing but were prepared to seek a voluntary agreement. But Professor Bobrow said that legislation forcing insurers to comply may now be the only option.
Lord Sainsbury, the science minister, said last year that the Government had reached the voluntary agreement with insurance companies. However, yesterday he said: "The government position was that this should be held off until [validation] happens and that is our position. We are still in discussion with them on this issue."
Professor Bobrow fears that patients are not coming forward for testing and treatment because they are worried it might jeopardise their chances of life insurance cover for mortgages or employment.
Richard Hobbs, head of life insurance at the ABI, said that a moratorium would harm more people than it would help and that insurers decided not to wait for the Genetics and Insurance Committee to report on the validation of tests because it was not known how long this would take. Anyone who suffered as a result of having to give information on genetic tests would have their case reviewed again should the test subsequently be found to be invalid, Mr Hobbs said.Reuse content