Personal finance: Genetic test dilemma

WOULD YOU be prepared to take out a genetic test to determine your predisposition to a range of diseases - including Huntington's disease, Alzheimer's and hereditary breast cancer - if the potential effect would be to deny you the possibility of ever buying your home or taking out life or medical insurance?

This is the dilemma which the Government attempted to grapple with last week, as it issued a long-awaited report into genetic testing.

Groups representing people with diseases that may soon be genetically tested have warned that an effect of such tests being the norm could be to deny life insurance, a requirement of most mortgage lenders, to anyone with a genetic predisposition to such illnesses. Or cover might be priced out of many people's reach.

The Department of Trade and Industry, which issued the report last week, claimed the Government has now reached a voluntary agreement with insurance companies to ensure all genetic tests are individually validated before they can be used by the industry. People who take genetic tests will have the right to keep the results from life insurance companies to prevent the birth of what many have called an uninsurable "genetic underclass".

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

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.

The Association of British Insurers has identified eight disorders where genetic tests can be useful for insurers, including Huntington's chorea and Alzheimer's. 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.

The response of insurers is broadly approving. It comes as research by Swiss Re, the world's largest life and health reinsurer, shows 51 per cent of people would be unwilling to take a genetic test, while only 15 per cent would be willing to share it with an insurer.

Peter Maynard, head of research at Swiss Re, says: "There are concerns about how insurers handle genetic information. But life companies need to be able to write business in a way that involves fairness from and to both parties in a policy."

Ian Reed, general manager at Cornhill, says: "I am pleased that the Government is setting up this independent committee. It should bring clarity into a confused area.

"The Government has vindicated our stance to refuse to take genetic test results into consideration for policies under pounds 100,000, even when it is available. Considerable progress has been made in the way the life [insurance] industry handles this information and we believe that the industry should have its own regulatory standards. The Government should not legislate on this.

"We are also concerned that an inflexible attitude could affect genetic research in general, and the customer's willingness to take such tests."