Stay up to date with notifications from The Independent

Notifications can be managed in browser preferences.

Life insurers use secret genetic tests

Steve Connor
Wednesday 28 July 1999 00:02 BST
Comments

Your support helps us to tell the story

From reproductive rights to climate change to Big Tech, The Independent is on the ground when the story is developing. Whether it's investigating the financials of Elon Musk's pro-Trump PAC or producing our latest documentary, 'The A Word', which shines a light on the American women fighting for reproductive rights, we know how important it is to parse out the facts from the messaging.

At such a critical moment in US history, we need reporters on the ground. Your donation allows us to keep sending journalists to speak to both sides of the story.

The Independent is trusted by Americans across the entire political spectrum. And unlike many other quality news outlets, we choose not to lock Americans out of our reporting and analysis with paywalls. We believe quality journalism should be available to everyone, paid for by those who can afford it.

Your support makes all the difference.

LIFE INSURANCE companies are using genetic tests to assess people at risk of inherited disorders despite government advice that there should be a moratorium until the tests are properly validated by independent experts.

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.

Join our commenting forum

Join thought-provoking conversations, follow other Independent readers and see their replies

Comments

Thank you for registering

Please refresh the page or navigate to another page on the site to be automatically logged inPlease refresh your browser to be logged in