Genetic Testing (Consent and Confidentiality) (Hansard, 23 May 2000)

§ Mr. Nick Harvey (North Devon)

I beg to move, That leave be given to bring in a Bill to require that genetic testing and genetic test results and other information derived from such tests may be used only for medical and clinical purposes, after informed consent of the patient has been given; to prohibit the giving of such information to other parties; and to prohibit insurance companies, banks, mortgage providers and employers from requiring genetic tests to be taken or insisting on disclosure of the results or of information derived from such tests. Hon. Members will be aware that genetic science is proceeding apace, that completion of the human genome project is not far away, and that it will soon be commonplace for genetic tests to be available for a variety of conditions. Currently, however, genetic testing is still in its infancy. Moreover, some genetic diseases are multi-factorial—meaning that, although a gene may predispose one to a disease, other environmental factors, such as diet and exercise, influence whether one gets it. To date, the scope of the Government's concern seems to have been to ensure that any genetic tests employed can be said to be accurate and appropriate for use by genetic companies—in short, that the tests detect what they are said to detect.

It is generally agreed that medical records and medical examinations may appropriately be used by insurers in an assessment of risk. Such information is historical, recording previous illness, disease and disability which it seems proper to take into account in deciding insurance premiums. Conversely, genetic testing looks forward, trying to establish what will happen. Many genetic diseases are currently not treatable. Information derived from genetic testing is, therefore, a very powerful matter for the individual concerned. It could reasonably be argued that, in cases of disease with a very poor prognosis, individuals have a right not to know and not to submit themselves to testing.

The problematic consequences of making available the results of genetic tests to insurance companies seem to be threefold. First, there would be the spectre of the creation of a whole underclass of people unable to obtain health insurance, mortgages or loans, and thereby financially excluded from society as a whole. Secondly, compelling individuals to take genetic tests against their will—to discover information that they do not want to know, and that might offer them very little or no medical advantage—seems to undermine the principle of informed consent.

Thirdly, some people who might benefit from appropriate medical intervention might be dissuaded from taking genetic tests because the information from the tests might later be made available to insurers. That concern goes over much of the ground that has been covered in previous debates on human immune deficiency virus and acquired immune deficiency syndrome.

The Association of British Insurers has in place a moratorium on the use of genetic testing. Regrettably, however, not all insurers are observing the moratorium. There have been exchanges between some of the campaigning pressure groups and the ABI on the conduct of specific companies. It is also worth remembering that 5 per cent. of insurance companies do not even belong to 878 the ABI or recognise its code of conduct. It is also clear that many of the companies that do recognise the code are requesting the declaration of all medical tests that have been undertaken, rather than restricting themselves in the matter as they are supposed to do.

The danger is that less scrupulous companies which ignore the voluntary code of practice will cherry-pick individuals who are low risk and offer them low-premium products. So far, only one company—Virgin—has pledged not to use genetic test information, for ethical reasons. As I said, however, the main argument is that although genetic tests may show a predisposition to a particular disease, they are absolutely uncertain in suggesting that an individual will necessarily get that disease.

Other countries have recognised the problem and are taking action to deal with it. In Australia, insurers are not allowed, for example, to ask for an applicant's age. In Sweden, there is an agreement between the Government and the National Federation of Swedish Insurers stipulating that insurance companies may not require either family medical history or genetic results to be disclosed by the applicant. There are legislative restrictions in a number of other countries, including Austria, Belgium and Norway, as well as in 18 US states, while Australia, France, New Zealand and the Netherlands have voluntary agreements.

The Government are putting too much faith in the ABI and its code of practice. The Government set up an earlier commission, which reported in November 1998 and recommended a ban. Unfortunately, the Government did not accept that recommendation entirely and set up two subsequent commissions, both of which I welcome, to look into the two aspects of the issue. One is considering the practical aspect of whether particular tests are accurate and satisfactory; the other is just beginning its work on ethical and social considerations. I regret that the Government have not introduced at least a temporary ban while the two commissions are doing their work. I also regret that the Government do not appear to have considered the public health aspect of the problem. They do not even seem to have put in place measures to monitor how many people will decline genetic tests because they are fearful of the insurance implications, thereby perhaps imperiling their health and not taking advantage of new procedures that would be available to them.

The ABI code of practice says that applicants will not be asked to undergo a genetic test, that insurers will take account of existing results only if their reliability and relevance have been established, and that they will not interfere with the premiums that they charge unless a genetic test clearly indicates an increased risk. That should apply only to a limited range of products, but it seems to apply more widely across the board. There are some notable exceptions and it is unfair that those insurers who behave in a controlled and ethical fashion should lose out to those who do not. That is a taste of what is to come if we do not put in place tight regulations that ensure a fair marketplace.

The Alzheimer's Disease Society has been vocal in its criticism of the ABI and the Government's position. Its main critique of the ABI is that it has failed to demonstrate that insurers need to collect information on pre-symptomatic genetic tests. That is an important point. If insurers are not able to get such information, they will be in the same position as they are today. They will not 879 be materially worse off for not having information in the future that they do not currently have. It is incumbent on them to show that the existing insurance markets will fail if the companies are denied such information.

The Alzheimer's Disease Society also points out that insurance companies have yet to demonstrate their competence in dealing with such genetic information or their ability to self-regulate. The society is right to flag up those substantial fears and many people are justifiably concerned.

I am also particularly encouraged that President Clinton has signed an executive order forbidding the United States Federal Government from using genetic information in employment decisions. That will protect all 2.8 million federal employees. President Clinton said: We must not allow advances in genetics to become the basis for discrimination against any individual or any one group. By signing the executive order, my goal is to set an example and pose a challenge for every employer in America, because I believe no employer should review your genetic records along with your résumé. That sets out a bold course in the United States and we should do something similar. We should recognise the example of other countries and realise that those scientific advances will soon be with us. The legislative framework within which companies will operate needs to be put in place now, so that when the scientific advances come no one will have any cause for fear or alarm.