Health put at risk by insurers' demands for gene test results

Medical ethicists are concerned about the new ruling by insurance companies that results of genetic tests have to be disclosed by people seeking new policies worth more than £100000 ($160000). They warn that the move may deter people from having tests that could save or prolong their lives and jeopardise future research into genetic testing.

In a statement issued last week the Association of British Insurers confirmed that member companies will not ask people to take genetic tests when applying for life insurance and that they will ignore any adverse test results of new applicants seeking mortgage linked cover of up to £100000. However, the results of those who require higher cover would be taken into account, which experts fear may lead to higher premiums or create an uninsurable underclass.

The threat of having test results disclosed against their wishes may drive many people to private testing centres–mirroring events in the 1980s, when insurers demanded to know if a customer had taken an HIV test.

“Bypassing normal health services could lead to all kinds of worrying consequences,” said Peter Harper, professor of medical genetics at the University of Wales College of Cardiff. “If someone had an abnormal results from a privately carried out test for breast cancer, for example, they may wrongly believe that means they are going to develop the disease. And conversely, a negative result may give someone false assurance that they will never develop breast cancer whereas the risk is still one in 10.”

Ann Sommerville, head of the ethics department at the BMA, was concerned about what may happen after March 1999, the expiry date of the present agreement. “We are worried that unfair discrimination is creeping into a person's ability to obtain insurance and concerned what future developments will be as the insurance industry gets more information about genetic testing,” she said. A BMA working party is currently developing a consensus statement on a range of genetic issues and hopes to publish its conclusions next year. “It is clear that we will be calling for some regulation,” commented Ms Sommerville.

“The whole issue of whether genetic test results of healthy people come under the category of medical information, which doctors are obliged to disclose to medical insurers, is unclear,” said Professor Harper. “Also, the Faculty of Actuaries in a seminar with the Royal Society last year concluded that the use of genetic test information was quite unnecessary. Even taking the worst case scenario the effects on insurance payouts would be insignificant,” he added.

The Commons all party science and technology committee criticised the insurance industry for taking so long to produce such a limited reform. It has called on the government's Human Genetics Advisory Commission to examine the proposals as a matter of urgency, and keep the issue under review.

Insurance companies are asking for information on genetic tests without knowing enough about them, believes Susan Bull, assistant editor of the Bulletin of Medical Ethics. “The level of sophistication required to use this data accurately to avoid penalising people unfairly is enormous,” she said. The likelihood of developing Huntingdon's Chorea is straightforward, but it is more difficult to calculate the risk of developing say breast cancer if a woman is found to have the BRCA1 gene as many people with the gene will not develop the disease, she said.