Feature
Unreliable evidence
Insurance companies want to use genetic information – yet genetic testing is unlikely to predict early death with any accuracy. David King investigates
How would you feel if you were refused life insurance because the insurance company felt your genes made you a bad risk? Opinion polls show that people are hostile to the idea that insurers should have access to their private genetic information yet until recently some companies were using genetic test results, albeit in the case of a very small number of people. In the US, the practice has already led to many cases of genetic discrimination.
In October, the government and the Association of British Insurers (ABI) 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). This time, the government’s Genetics and Insurance Committee (GAIC) will be involved in monitoring. The announcement resolved a year of intense politicking over the issue, sparked last August by the uproar over approval, by GAIC, of the use by insurers of genetic tests for Huntington’s disease.
Much of the political heat surrounding the issue was no doubt linked to the election. For the Labour Party, allowing the issue to become high profile let them play to their core vote by making threatening noises towards the popularly disliked insurance industry. These noises, and indeed the current resolution of the issue, have cost the government and industry little.
As inquiries 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 number of people involved is still very small (few genetic tests can reliably predict early death), so are the financial stakes. The industry argues that it needs genetic test results to prevent consumers who know they are going to die young taking out huge policies. For at least five 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 such as cancer and heart disease became available. This is a very big if: many scientists doubt that genetic tests will ever give clear, reliable predictions because of the complexity in the way both genes and environment influence disease susceptibility.
The insurance industry’s strategy is clear and is 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 become available, we will see the industry really playing hardball.
An issue that has become key is the use by insurers of family history. A typical life insurance form asks whether any of your immediate family have suffered from cancer, hypertension, stroke, heart disease and so on. Although family history information is notoriously inaccurate, insurers have used this information for many years to increase premiums for about 4 per cent of people and exclude 1 per cent entirely (known in the industry as underwriting).
“Most people feel that their genetic information defines something important about their existence”
They argue that family history is a form of genetic information, and since they use that, so there is no reason for them not to use genetic test results. They are afraid that a ban on using test results will also inevitably lead to a ban on family history, which, the insurers 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 per cent, which seems bearable. 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 insurers sometimes request from people’s GPs. The industry argues that genetic information is just another piece of medical information, no different from that on existing conditions or 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 accords very different meanings to genetic information and cholesterol level results. 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, making it personal and private.
Unlike the experts, most people have an intuitive grasp of the social meaning of genetics. They understand that it has an ability to stigmatise and marginalise 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 on it, such as mortgages.
Thus, public hostility to the use of genetic tests by insurers is based not on hysteria, as the industry and some politicians argue, but 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 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 future provide reliable predictions of disease susceptibility, the social consequences of allowing widespread genetic discrimination will be 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 insurers from financial loss.
David King is a former geneticist, and coordinator of Human Genetics Alert, a watchdog group campaigning for democratic and responsible use of genetics.Threat of cloning advances
Just as this article was going to press, a US biotechnology company, Advances Cell Technology, produced the first cloned human embryo, provoking criticism from US President George Bush and others. The embryo only grew to six cells, and the company says it wants to do cloning to produce stem cells for medical purposes, rather than creating babies.
However, Italian fertility doctor Severino Antinori says he will begin producing cloned human embryos for implantation in women by the end of this year. Unlike other publicity seekers, Antinori and his colleague Panayiotis Zavos, from the USA are a credible threat, having a strong record of breaking other fertility treatment taboos.
It is not known in which country Antinori and Zavos are conducting their experiments. Their announcement spurred the French and German governments to initiate the process towards an international ban, by the UN General Assembly. So far, the proposal has received strong support but a convention would take three years to sign. The UK, meanwhile, has yet to sign the Council of Europe protocol banning cloning.
In Britain, the government has been embarrassed by a legal ruling that cloned embryos are not covered by the law. Thus, contrary to government reassurances, cloning is not illegal in Britain at present, which has forced Labour to introduce emergency legislation to ban the process.
However, the legislation has a major loophole: it would allow the creation of cloned embryos, which would still be outside any legal regulation, and would ban their use only to create a child. This would allow cloners to use the UK as a base, then export embryos for implant women abroad.
