Previous Section Back to Table of Contents Lords Hansard Home Page


Lord Addington: I believe that many of the problems that were raised are dealt with, as my noble friend pointed out, by paragraph (a) of the amendment; namely, the words,


I believe that the point is covered in many of the grounds already stated.

The Minister gave a full and interesting reply. It is a matter about which we have great sentiment at this stage. Indeed, we actually believe that the idea is sound. However, whether or not the amendment proposed happens to be the right vehicle does not matter very much because we are only in Committee and can look at it again. I wish to read what the Minister has said, take the opinion of experts in this field and possibly return to this subject. I beg leave to withdraw the amendment.

Amendment, by leave, withdrawn.

[Amendment No. 24 not moved.]

7.30 p.m.

Lord Swinfen moved Amendment No. 25:


Page 2, line 41, at end insert:
("( ) In the case of an act which constitutes discrimination by virtue of section (Discrimination: genetic predisposition), this section also applies to discrimination against a person who, at the time, is not disabled.").

The noble Lord said: In moving Amendment No. 25 I wish to speak at the same time to Amendments Nos. 67 and 130. In introducing a right for disabled people not to be discriminated against in employment and in access to goods and services the Bill will extend protection to many who have suffered greatly as a result of institutionalised discriminatory practices endemic in society. However, in putting right a wrong, care should be taken that measures

13 Jun 1995 : Column 1710

proposed are inclusive rather than exclusive and do not themselves create the possibility of discriminatory practices.

Recent developments in the understanding of the genetic base for a range of conditions means that it is increasingly possible to determine whether or not an individual will develop a disorder before he or she shows symptoms of the disorder; in other words, pre-symptomatic testing can increasingly inform healthy people that at some time in the future they will either become, or run the risk of becoming, disabled. The advent of such testing means that those at risk are able to make informed choices concerning major life events such as the decision whether or not to have children. It also creates the opportunity for those making decisions about those at risk to use the information in a way that disadvantages them unfairly.

The Bill as it stands will make it possible for a healthy person whose genetic make-up means that he or she will one day have a disability to be treated in a way that would be illegal if he had begun to manifest symptoms. Indeed the wording of paragraph 7 to Schedule 1 to the Bill, whilst recognising the progressive nature of many conditions, and bringing them within the scope of the Bill, specifically excludes those who have not yet begun to show symptoms but who will do so because of their genetic make-up. This is blatantly discriminatory and is surely contrary to the intention of the legislation. Furthermore, it will also increase the numbers of those who find it more difficult to enter the labour market and make adequate provision for themselves and their dependants, with a consequent increase in the likelihood of other problems developing that will need intervention or support from statutory services. Such people are also highly likely to become dependent on benefits for financial support.

If healthy people who are at risk from genetic conditions feel that they will be discriminated against if they put themselves forward for a diagnostic test which turns out to be positive, then they will be less likely to have the test. This could have severe consequences for their health and that of any dependants who may be born as a result. For example, about half a million people are thought to be at risk from—I shall have difficulty expressing this medical term—familial hypercholesterolaemia. However, only about 10 per cent. have availed themselves of specific diagnostic tests. If detected early enough, a dietary and exercise regime can be introduced that will result in the individual being able to lead a virtually normal life. Without this the individual will almost certainly experience early onset of severe heart disease with consequent severe incapacity and premature death, yet those detected frequently experience significant difficulty in getting work. Their occupational choices are curtailed and they either cannot get insurance or can only do so if they are able and willing to pay significantly raised premiums, or accept greatly reduced cover. It is clearly unreasonable that health decisions should be adversely influenced by people's fear of their possible consequences in other areas of life. If the Bill is to produce the hoped for improvement in the lives of those whose disability is due to a genetic cause, then the position of

13 Jun 1995 : Column 1711

those in the pre-symptomatic state must be protected, otherwise all that will happen is that the problem will be brought forward and they will be worse not better off.

Can the Minister clarify the Government's position and make clear that those who are in the pre-symptomatic phase cannot be treated any less favourably than they would be if their condition had advanced to the point whereby it had begun to show external manifestations? As an example, there is a family in Dumbartonshire who I understand are buying a house with an endowment mortgage. It is not clear whether the endowment insurance carries a loaded premium or not. The current total outgoings on the endowment mortgage are some £400 a month. As they were worried about the possibility of the payment of mortgage interest being changed in the income support regulations, they asked their building society to arrange a quotation for insurance cover to pay the mortgage in the event of sickness or unemployment. The monthly premium quoted was £104 which is beyond their capacity to pay. They are worried about the possibility of losing their house as they have adapted it to meet the needs of the husband and daughter who both have epidermolysis bullosa. There are few council houses in the area and none are already adapted. This is a problem that we ought to face in this Bill. I beg to move.

Lord Addington: I rise to support this amendment to which my name is added. There are few certainties as regards inherited genetic conditions but the likelihood or the certainty of their being inherited should not be used as a means of discriminating against someone. An amendment of this kind is totally in character with the aim of this Bill of preventing discrimination. I hope that it receives the support of the Committee.

Lord Ashley of Stoke: I wish to support the amendment moved by the noble Lord, Lord Swinfen. I am delighted he did so because it is an extremely important amendment. A little while ago I attended a meeting of the all-party disablement group and I heard a bunch of experts speaking about the problems of those with genetic disorders. I found that discussion very disturbing because people with those disorders are not only facing the probability of developing a serious illness later in life but they are also facing serious discrimination.

Knowing that the noble Lord himself is a great expert on all aspects of disability, I assumed that he and his colleagues would have made provision for these people. I read through the various debates on this matter and I found to my amazement that the Government are opposing these amendments. I cannot quite make out why they are opposing them. I have read their words but I am still looking for the meaning. Possibly when the noble Lord replies to the debate he will try to convince the Committee on this matter, but I can see no substantial reason why we should not make special provision for people with a genetic disorder.

I think it is absolutely undeniable that some, although not all, employers, and some insurance companies, will discriminate against people with a genetic predisposition. From their own extremely narrow self-interest some of them are bound to do that, and these are the people who we must prepare ourselves for and for whom we must legislate. This amendment is of crucial importance. I think in the future there will be—-

13 Jun 1995 : Column 1712

Lord Vinson: Will the noble Lord give way?

Lord Ashley of Stoke: Yes, by all means.

Lord Vinson: In the case of epilepsy if, thanks to the advances of medical science, it was shown that someone was going to be prone to epileptic attack but had, fortunately, up to that point not had an epileptic attack, would it be regarded as discriminatory if the insurance company refused to insure that person, if it was aware of the condition, because the person might suffer his first epileptic attack while driving a motor car? Would the noble Lord regard that as discriminatory or non-discriminatory? I am afraid it is cases like that which are likely to arise. I would be grateful to hear the noble Lord's views on that.

Lord Ashley of Stoke: I would certainly regard that as discriminatory. Epileptics have been discussing this issue, as the noble Lord probably knows, for some time. The question is whether the Minister will so regard it. Perhaps, having overheard the noble Lord's question to me, he will address himself to it.

The problem is that when there is a predisposition people are not designated as disabled, but clearly they will be and they are faced with the problem of discrimination. I do not know what the Minister is muttering about, but if he wants to intervene he is more than welcome to do so. When employers and insurance companies discriminate against people on those grounds I believe that we have to take action in this House.

I was about to say that in future the struggle will be between those who are at risk trying to avoid tests because they are worried that if the results of the tests are known they will suffer discrimination, and on the other hand employers and insurance companies demanding that there should be tests. That is the real problem. They would want the results of the tests to be considered for job evaluation and insurance purposes. Whatever the outcome, those people have no protection if the Minister sets his face against the amendment.

I know that the Government have tried to justify their stand by saying that it is psychologically damaging to treat such people as disabled. I believe that it is more damaging, both psychologically and practically, to deny those people a job or insurance.

As scientific knowledge advances, as it is very quickly, this will become a major problem throughout Britain and the world. Many more people will be able to have tests and many more of these problems will be discovered. Therefore, we need to establish a framework for the future. The Government say that this Bill is not the right place to do that. On the contrary, I believe that this is exactly the right place for such a provision because this Bill is concerned with discrimination. The noble Lord shakes his head. It is. The Bill is called the Disability Discrimination Bill. I never knew that one could split hairs like that. This Bill is concerned with discrimination against disabled people. This is an opportunity to make special provision for those people because they suffer criminal discrimination. They are very vulnerable people; they are waiting for an illness, which is a further blow. There is no excuse for the Government refusing them protection.

13 Jun 1995 : Column 1713


Next Section Back to Table of Contents Lords Hansard Home Page