BBC News | BUSINESS | The price of having the wrong genes

Genetic testing and its implications for people wanting to take out insurance are coming under scrutiny by a parliamentary committee.

The science and technology select committee will be looking at the ethics of giving insurance companies access to genetic test results, and how reliable the tests are.

Genetic tests, for hereditary diseases, are becoming more popular. But a positive test result can make it very expensive, or even impossible, to get certain kinds of insurance - such as life cover.

Six years ago 'Mark' had a test that he knew could change his life. He took a genetic test for Huntington's disease - a rare, but fatal, inherited brain condition.

Stephen Sklaroff, Association of British Insurers
Stephen Sklaroff: "Sustainable position"

The test was positive. And as a result, 'Mark' had difficulty in getting a mortgage and was initially turned down for life assurance.

When he did eventually buy a policy, it was much more expensive.

"I was finally offered a life insurance policy which I did not think I could get," he says. "But it was loaded to five times the normal rate - that didn't leave many options open to me but I felt I had to have life cover."

Code of practice

Since then, the Association of British Insurers has drawn up a code of practice.

The code says that:

insurance companies cannot ask people to take a genetic test...

... but they can, in some circumstances, ask for the results if someone has already had one.

when the policy concens life insurance for less than �100,000 in cover for a new mortgage, test results are not needed.

A number of insurance companies, including Standard Life, the Co-operative Insurance Society and Virgin Direct, do not use genetic test results at all.

But the British Medical Association says it has anecdotal evidence that some companies are flouting the code and pressuring people to take tests.

Dr Michael Wilks, of the BMA Medical Ethics Committee, explained that "the agreement has been carefully drawn, but it is only a holding agreement.

"We are concerned, of course, that the more we go down the road of precision testing for specific patients for specific insurance policies the more likely we are to create a group who simply will not be insureable."

Doctors' concerns

The British Medical Association says it is concerned about the impact of genetic testing on insurance.

It is worried that the insurance industry's current posistion is potentially confusing to customers - and that in the longer term, more people will find it harder to get insurance.

The ABI says insurance companies only use test results for small number of diseases, and it believes its code is straightforward.

The more testing for specific patients for specific insurance policies the more likely we are to create a group who simply will not be insureable.

Dr. Michael Wilks, BMA Medical Ethics Committee

"What it is trying to do is set up a sustainable position, as knowledge grows in future, for the use of such information in a restricted number of cases by the insurance industry," says Stephen Skarloff of the Association of British Insurers.

But 'Mark' believes the issue is simple - people shouldn't face the prospect of being denied insurance because of a genetic test result.


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