The use of genetic tests to set insurance premiums is an emotive subject. A report by the Human Genetics Commission (HGC) late last year showed that nearly 80% of people think it is wrong for genetic information to be used in deciding premiums. More than 60% of people think genetic tests should not be shown to insurers before they set life insurance premiums.
Scare stories fill the Sunday papers, with a picture emerging of a lower class of diseased misfits, unable to get insurance, marked forever by their positive genetic test. The Consumers' Association has called for a full, public debate before the use of genetic tests in insurance becomes widespread. It says: “Our main concern is that a genetic underclass could be created if the potential for disease is identified in the genes of part of the population and they find it difficult or expensive to get insurance.”
The Association of British Insurers decided two weeks ago it would not pursue permission to use four common genetic tests in underwriting. It has already received permission from the government's Genetics and Insurance Committee (GAIC) to ask if potential customers have taken a test for Huntington's disease. It will continue to pursue the right to ask about genetic tests for hereditary breast and ovarian cancer and Alzheimer's disease. But experts believe sufferers of the seven diseases will not be stigmatised by the insurance industry. Instead, they say the push for the right to use genetic testing is more about protecting underwriting freedom than penalising those with rare diseases. So, does Joe Public have anything to worry about yet?
Actuaries who have been watching the insurance industry's reaction to genetic testing suggest it is too early to panic about a genetic underclass. Chris Daykin is the deputy chairman of the UK Forum for Genetics and Insurance, which was established by the Institute and Faculty of Actuaries in 1999 as a discussion centre for interested medical, consumer, social and financial groups.
Daykin says the tests being lobbied for by insurers are not financially vital to the industry, but are being used to set standards, should future developments allow insurers to predict diseases that would have a greater effect on underwriting, such as heart disease. “From an actuary's point of view, we'd argue to the HGC that it maybe isn't that economically important for insurance companies to use these tests,” he says.
“Most of these conditions are relatively rare and there is already quite a good amount of information available to insurers. “ Instead, Daykin says insurers want to ensure that the process of application and approval through GAIC is seen to be working. “Insurers are setting boundaries, putting down a marker that underwriting should not be constrained, rather than talking about the making or the breaking of the industry,” he says. Daykin finds that genetics is not a hot conversation topic in insurance circles, but that the industry wants the issue out in the open, having seen undesirable results from similar debates in the US and Europe.
David Paul, of the Institute of Actuaries' genetics group, agrees that insurers are keeping their options open for events that may affect them in the future, while trying to keep a balance with any threat represented by the tests available at present. “There has to be a defence for things that may come over the hill. We're not saying they will come along but if they do you can understand why insurers want to protect their market operation.”
The populace also has plenty of government-related bodies purporting to be looking out for its best genetic interests. The Human Genetics Advisory Commission (HGAC) was set up in 1996 to offer the government independent advice on genetic issues and released a report on insurance and genetic testing as early as 1997. The HGAC was succeeded by the HGC in December last year. Its brief is to advise the government on the genetics big picture, with a focus on ethical and social issues.
The HGC produced the report Whose Hands on Your Genes, which contained the statistics on public antipathy to the use of genetics in insurance quoted earlier. Consultation on the report continued until the end of February and a plenary meeting held by the commission tomorrow will be open to the public.
The gene genie is out of the bottle and the public is not happy about it. This is partly due to feverish tabloid headlines, an innate mistrust of insurers and a greater public distrust of the government. The industry must respond to this concern with great sensitivity, or risk losing public trust forever.