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Genetics and Insurance

How would you feel if you were refused life insurance, because the insurance company felt your genes made you a bad risk? Opinion polls have shown that people are hostile to the idea that insurers should have access to their private genetic information, yet until recently some companies have been using genetic test results albeit for a very small number of people. In the US this has already led to many cases of genetic discrimination.

On October 23^rd the government and the Association of British Insurers (ABI) jointly announced the agreement of a voluntary five year moratorium on the use of genetic test results by insurance companies, except for life policies over £500,000 and critical illness/long term care policies over £300,000. Unlike previous moratoria, this will not be entirely self policed (and hence widely flouted) - the government's Genetics and Insurance committee (GAIC) will be involved in monitoring it. The announcement resolved a year of intense politicking over the issue, that was sparked in August 2000 by the uproar over approval of the use by insurers of genetic tests for Huntington's Disease, by GAIC

Much of the political heat attached to the issue was no doubt connected to the election. For the Labour Party, allowing the issue to become high profile let them play to their core vote by making threating noises towards the popularly disliked insurance industry. These noises, and indeed the current resolution of the issue have cost the government and industry very little: as the enquiries by both the select committee on Science and Technology, and the Government's official genetics advisers, the Human Genetics Commission have made clear, because the numbers of people involved are still very small (there are still very few genetic tests that can reliably predict early death), so are the financial stakes. The industry always argues that it needs genetic test results to prevent consumers who know they are going to die young with taking out huge policies. For at least 5 years, the magnitude of such so-called adverse selection would be tiny, even if there were any evidence that it was actually occurring, or was likely to in future.

Such effects might theoretically become significant if predictive genetic tests for major killers like cancer and heart disease were to become available. This is a very big if: many scientists doubt that genetic tests will ever give clear, reliable predictions because of the complexity of the way both genes and environment influence disease susceptibility. The insurance industry's strategy is clear, and is actually well served by the moratorium. Its aim is to prevent a 'premature' statutory ban on the use of genetic tests results, until such time that the scientific issues becomes clearer. A moratorium neatly takes the political heat out of the issue and gives both government and industry breathing space. If heart disease prediction tests do become available, we will see the industry really starting to play hardball.

An issue that has become key is the use by insurers of family history evidence. A typical life insurance form asks whether your immediate family have suffered from cancer, hypertension, stroke, heart disease etc. Although family history information is notoriously inaccurate, insurers have used this information for many years to increase premiums for about 4% of people and exclude 1% entirely (known in the industry as underwriting). They argue that family history is a form of genetic information, and since they use that, there is therefore no reason for them not to use genetic test results. They are afraid that a ban on using genetic test results will also inevitably lead to a ban on family history, which, they suggest, would destroy the industry or lead to a massive rise in premiums for everyone, as those with normal risks subsidise the bad risks. In fact a recent research paper said that insurance premiums would rise about 10%, which does not seem too much to bear. While a number of European countries and many US states ban the use of genetic tests, fewer ban underwriting. The Human Genetics Commission plans to address this issue during the moratorium.

A related issue concerns the medical information which insurers sometimes request from people's GPs. The industry argues that genetic information is just another piece of medical information, no different from information about existing conditions, or from cholesterol levels, which also have predictive value. The question of whether genetic information is special is a major focus of the wider debate on genetic privacy. Many commentators argue that it is hard to find clear qualitative differences between genetics and other types of medical information.

Such technical and philosophical arguments are part of an attempt to depoliticise the issue. What they miss is the broader social context, which creates very different meanings for genetic information and cholesterol level information. While the latter is just a fact about their body, most people feel that genetic information defines something important about their existence, identity and uniqueness, which makes it especially personal and private. And unlike the experts, most people have an intuitive grasp of the social meaning of genetics. They understand that genetics has an ability to stigmatise and marginalize people which fits well with free market tendencies to destroy social solidarity. Competitive use of genetics by insurers would be likely, for example to lead to destruction of the existing system of pooling good and bad risks. Insurers are already showing tendencies to 'cherry picking' - giving lower premiums to those judged robust and healthy - and would conversely like to exclude more bad risks. Taken to an extreme this could lead to a 'genetic underclass'of people unable to have access to insurance and the social goods that are dependent upon it, such as mortgages. Thus the public's hostility to the use of genetic tests by insurers is not based on 'hysteria' as industry and some politicians like to argue, but rather on an intuitive understanding that discrimination by insurers is just the sharp end of a much larger eugenic tendency that may be returning, along with the new ascendancy of genetics.

Human Genetics Alert believes that genetic discrimination by insurers is wrong in principle, benefits no one except insurance companies and should be banned. People should not lose out because of their genes, over which they have no control. There is already evidence that people are refusing to take genetic tests, which may benefit their health, for fear that they will lose their insurance. If genetics does, in the future provide reliable predictions of disease susceptibility, the social consequences of allowing widespread genetic discrimination are frightening.

The government should bite the bullet sooner rather that later, and introduce a clear ban, along with legislation guaranteeing privacy of genetic information. Once clear rules are in place, measures can be taken to protect the insurance industry from financial loss.

Dr David King is a former geneticist. He is Coordinator of Human Genetics Alert, a watchdog group campaigning for democratic and responsible use of genetics. For more information, write to HGA Unit 112 Aberdeen House, 22-24 Highbury Grove, London N5 2EA, call 020 7704 6100 or visit www.hgalert.org