Discrimination (Genetic Information) (Hansard, 5 April 1995)

§ Mrs. Anne Campbell (Cambridge)

I beg to move, That leave be given to bring in a Bill to prevent discrimination against people who have had genetic tests or have a genetic predisposition to disease, and to guarantee the privacy of such persons. I bring this issue to the attention of the House to highlight some of the problems faced by people who have a genetic predisposition to disease although they have not as yet developed any symptoms of the disease.

Last week, we had a useful discussion on an amendment to the Disability Discrimination Bill, which was moved by the hon. Member for Stratford-on-Avon (Mr. Howarth). I supported the amendment, which would have given people with genetic predisposition to disease the same protection as those who are already disabled. I am sorry that the House did not support that amendment, but I understand that some right hon. and hon. Members took a contrary view because they felt that the issue was a great deal more complex than suggested by the amendment. However, I was encouraged by the Minister's comment to the effect that the Government's door would be open for further discussions. That was one of the most encouraging remarks made during that debate.

I am sure that the Minister and others will be looking carefully at the recommendations of the report by the Select Committee on Science and Technology into human genetics, which will be published in the summer. That inquiry will encompass much wider issues than those covered in the Bill. However, I hope that the Bill will encourage dialogue between the Association of British Insurers and the Genetics Interest Group so that some sensible proposals can be agreed to deal with the difficult ethical, legal and social issues relating to the rapid advances taking place in human genetics.

The Genetics Interest Group has brought to my attention a number of cases involving people with genetic disease who have been discriminated against by employers, building societies and insurance companies. This sometimes happens because of ignorance, as the following case shows.

A senior town planning officer with a London borough developed sickle cell disease. It is a hereditary blood condition that can cause painful crises which result in hospitalisation. The crises are exacerbated by cold, damp and stress so it is important that those affected have adequate housing and secure financial arrangements.

In his first post, the officer was able to join the local government superannuation scheme without any difficulties. Three years later, he was offered promotion with another London borough. Getting the job was not a problem, but continuing his membership of the superannuation scheme caused major problems, despite the fact that he was already a member and had been for three years. Continuing his membership required several additional medical examinations and took six months to resolve. That is inexcusable for someone who is already part of a superannuation scheme and shows that the medical officer did not really understand the problem.

Another man was employed as a project manager in the oil and gas industry. One of the benefits that came with this employment was a free subscription to a private medical insurance scheme. He became ill and had to take 1765 a significant amount of time off work. He was referred to a Harley street specialist who determined that he had haemochromatosis.

The specialist, the tests and the week in hospital were all paid for by the private medical insurance scheme. However, following a further medical examination, the private medical insurer wrote to say that, as the man now had a medical condition that required continuing treatment, the company would not continue the insurance. From responses to various letters that he has written to private medical insurers, the man understands that he can obtain medical insurance but that such insurance will exclude cover for haemochromatosis and related conditions. When he asked what the related conditions were, he could not obtain an answer.

Like me, that man finds it unacceptable that insurers can throw someone out of a scheme and says that he hopes that it will one day be illegal to exclude people who become ill after joining a scheme. He also believes that insurers should be forced to give their definition of related conditions because what worries him is that whenever he tries to claim on his health insurance the insurers will claim that the condition is related to haemochromatosis.

At the moment, no insurance company in the United Kingdom requires people to take a genetic test before they can be insured, but I am worried that market pressures will lead to such a requirement as more tests become available. For example, if a rogue insurance company wanted to offer low insurance premiums for health cover, it could do so by requiring people to take a genetic test and then refusing cover for those who were found to be predisposed to genetic disease. The pressure on other companies to follow suit would be great, and it is of the utmost importance that it should be illegal for insurers to require people to take a test, even if they have a strong family link with a particular disease.

In many cases, there is at present no advantage to an individual in knowing that he is predisposed to some diseases as they are diseases for which there is no cure, although that may change in the future. As medical research advances, it is possible that genetic diseases such as cystic fibrosis will be fully treatable by gene therapy, but, at present, I would not want to know if I were likely to contract Alzheimer's disease as there would be absolutely nothing I could do about it. However, I would like to know whether I have an inherited trait to hyper-cholesterolaemia which may cause me to have a heart attack or stroke. If this is the case, with a low-fat diet and plenty of exercise, I can drastically reduce the risk of contracting this disease.

It is beneficial for individuals to know about their predisposition for reasons other than the one I have just mentioned. A case has been quoted to me of a family whose child has tuberous sclerosis. This disease can affect any part of the body with small tumours which can appear from birth. In some cases, the symptoms are so mild that people do not realise that they have the disease until it affects them in mid-life. If a child is found to have the disease, it is certainly advantageous for the parents to be screened because they can then make an informed decision about whether to have any further children should one of them be found to carry the gene.

1766 In some cases, it is beneficial for people to have genetic tests, but it can be disadvantageous to have a genetic test for insurance purposes. Even if the insurance company does not require a person to have a test, it is commonplace for companies to ask applicants to disclose the results of any medical test that they have had. If people feel that they will be discriminated against if they have had a positive test, they will probably make the decision not to have a test or at least to defer it. This can be harmful to them if they do not make the necessary changes to life style which would reduce the risk of becoming ill and it might be harmful to their future children if they are carriers of unsuspected diseases.

It would, therefore, be helpful to require insurance companies to allow people to keep the results of any medical tests completely private. However, the insurance companies have made an important point, which is that if someone has a test which confirms that they are virtually certain to become ill, it will be beneficial for them to take out millions of pounds' worth of insurance as they cannot lose by it. This would be unfair as it would mean that individuals would benefit from prior knowledge. It is rather like betting on a horse race when the result is fully known. I believe, however, that it is appropriate that those people should be able to get at least some protection against risks that they acquire through no fault of their own. There is a strong case, therefore, for limiting the total amount of insurance money paid out to a single individual in the case of a genetic disease and for ensuring that those costs do not fall too heavily on a single insurance company.

There are many possible ways in which to deal with the problem. The one I propose is as follows. I suggest that the costs should be borne collectively by the policyholders of all insurance companies. In this case, a levy would be imposed on all companies that cover a particular disease and the proceeds of the levy would be used to pay out to those who ultimately contracted the disease. That would protect individuals and individual companies which might, by chance, find that they had insured a disproportionately large number of high-risk individuals. There is a direct analogy with car insurance. Car insurers maintain a financial pool which they use to compensate any of their members who are involved in car accidents with people who are, illegally, not insured.

Under the arrangement I propose, people with a predisposition, as a group, would receive a subsidy from those with no such predisposition. A strong case can be made for imposing a ceiling—