House of Commons Hansard Debates for 28 Mar 1995

Dr. Bray: My hon. Friend raises several important issues that need to be regarded in a wider context.

There is a range of considerations. First, the circumstances differ widely for different genetic predispositions. Sometimes there is a high probability that an illness or malcondition will occur; at other times, there is a low probability. In some cases, it is long postponed; in other cases, it occurs at a very early age. In some cases, there is rapid progress in research and there is the prospect that some treatment may be found during the lifetime of the person affected. In other cases, it is a hugely difficult issue whereby, according to the present state of knowledge, there is not much optimism of a therapy being found in the foreseeable future. Against that background, we are dealing with public attitudes and parliamentary attitudes that are inappropriate to consideration of those issues. A public who expect one to insure against risks of a million to one--against the extreme improbability of people incurring cancer as a result of a tiny radiation leak, requiring huge investment at a nuclear power station or something like that to avoid that risk--are plainly not a public who are able to cope with 1 per cent., 10 per cent. or 30 per cent. probabilities of their having a child with a certain predisposition, which they will need to come to terms with in their personal lives.

In Parliament, it has been money for old jam to take up some cause about which the public can be panicked and to build that up into a great campaign, producing wild biases in the allocation of resources, in the direction of research and so on, which do not lead to a sensible set of personal attitudes. The most important aspect of legislation is the type of demonstration it gives people as to how they should react in certain circumstances.

Sir Giles Shaw (Pudsey): Does the hon. Gentleman agree that it is exactly the problem that so much may be expected of genetic screening and so many unwise decisions might be taken in the light of genetic screening that makes it essential to avoid a mass hysteria resulting from people supposing that we shall all be able to have genetic screening, and that we shall all be found to have Alzheimer's disease? Hence the disservice that would be done, in my humble estimation, if the amendment were made, because it would arouse expectations that should not be aroused, and would make such persons even more vulnerable than they may feel now.

Dr. Bray: The hon. Gentleman, who is Chairman of the Select Committee on Science and Technology, well understands the complexities. My judgment would be that, on the whole, given the present set of public and

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parliamentary attitudes, given the splendid progress that the Committee is making under his enlightened chairmanship, and given the likelihood that the Government will accept the recommendations that we make in that report, it is a sensible measure, in response to the alert identification of the bias in the Bill by the hon. Member for Stratford-on-Avon (Mr. Howarth), to tackle the practical position that it creates by the amendment that he has tabled.

I repeat that it can be only a temporary disposition, and the House must return to those matters.

Mr. Wigley: I approach the issue from the viewpoint of disability, although I should have very much liked to have been on the Select Committee on Science and Technology, which is inquiring into those matters.

I suppose that I should declare an interest immediately, because I lost two boys because of a genetic condition, and therefore I am a carrier. That may put me in a different position from other Members of the House. On the other hand, it may not, because all of us have on average half a dozen genetic abnormalities, and it is very often a matter of luck whether those abnormalities lead to one's offspring having genetic problems.

That being so, the problem is not an individual one but a general one, because, as hon. Members have said, we shall confront massive problems over those issues in the next few years, and very shortly. I have discussed some of the implications with Professor Peter Harper and others.

There are two distinct aspects. One is the aspect that impinges immediately on discrimination in the context of the Bill, such as in the place of work. It is unacceptable that we should say that it is legitimate for there to be discrimination against a person because that person has a potential of having a disability at some time--that is, to discriminate against a perfectly healthy person at the moment because something may or may not happen in future.

To make it worse, because many of the rarer conditions are not well understood, a potential employer may read in all types of difficulties in a few years' time that may not be there, because the rate of progress of many conditions varies enormously.

One thinks of people with some of those conditions who have made enormous successes in their lives. One thinks of Sir Charles Evans, who was principal of the University College of North Wales, Bangor, who very nearly reached the summit of Everest in 1953, yet who, for his latter years, was in a wheelchair with MS. If he had been discriminated against because of the condition that he potentially had, it would have been outrageous, and no one was to know the speed at which that condition developed.

Therefore, in the context of employment, it is untenable to hold the opinion that has been held by some Conservative Members in resisting the amendment. I think that that goes along with a whole load of other aspects of the Bill regarding services and other facilities needed by disabled people, but especially employment. Hon. Members have mentioned another matter--insurance. There, I suspect, we have it, because I am very much aware of a strong lobby in the insurance world that is of the viewpoint that it has the right to use all and any

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information available in calculating insurance premiums and liabilities, and that to restrict that lobby from having that information is to cut across the whole profession.

The argument that I would make about that--I would base it on a different premise from the argument that I made regarding employment--is that insurance should be regarded as a spreading out of risk, and if we are approaching a position where the genetic mapping of every individual is potentially known, all those calculations can be made and the whole industry will be turned upside-down. I would prefer that we resist that at the moment, that we take it that there must be an average loading of premium, and that the more difficult, expensive cases must be carried by the rest of us who are lucky enough not to have those problems.

Mr. Batiste: I do not necessarily disagree with what the hon. Gentleman says about insurance, but my understanding of the amendment is that it will not have that effect. If the insurance companies can show that there is an actuarial base for the premiums that they wish to charge, it will simply enable them to identify higher-risk groups and load the premiums even more on to those groups.

The way in which one should approach the matter is to consider whether the documentation should be supplied in the first place, in view of the overwhelming need to get as many people screened as possible in the categories required.

Mr. Wigley: Yes, but the clause and the Bill have nothing to do with the provision of the documentation. We are talking about discrimination-- discrimination against people on the basis of their potential disability. I believe that that is an unacceptable way of going about things.

There may need to be some amendment in another place to fine-tune the implications in insurance, although I do not believe that that is necessary. I believe that the approach that must be taken is a broad-based approach by the society in general--by which I mean the society of people who are insuring, accepting the overall swings and roundabouts of risk. However, if there is another approach whereby some safeguards for insurance work need to be built in in another place, so be it.

However, it would be wrong to allow discrimination to be acceptable in the context of employment and all the other contexts that we have examined in the Bill because of those problems. The Government should accept the amendment. If there needs to be some fine tuning after that, so be it. I accept that there will be much more legislation on other aspects of the subject that have far-reaching implications.

Mr. Miller: I shall not repeat the issues with which the Select Committee on Science and Technology is dealing--my hon. Friend the Member for Motherwell, South (Dr. Bray) covered the subject extremely well.

The key issue is whether we should take a neutral view on issues relating to genetic predisposition, a negative view--as clause 1 does--or follow the lead of the hon. Member for Stratford-on-Avon (Mr. Howarth) and take a positive view. To my mind, there is only one choice.

The hon. Member for Stratford-on-Avon referred to people minded to discriminate, which is what we must focus on. As the hon. Member for Elmet (Mr. Batiste) said, it is clear that each of us has a genetic predisposition

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to something: the problem is that we do not know what it is. The only certainty in life is death. We all have a genetic predisposition to some condition or another, and our knowledge will grow, but that is not what the clause is about.

The clause is clearly about the circumstances in which people discover that they have a genetic predisposition that may result in a shortening of their life or a serious late-onset disease that causes them to be discriminated against. Clearly, such people should not be the subject of discrimination, and I think that the Government would agree with that.

The question is one of definition. A number of clauses refer to issues such as progressive conditions and histories of impairment. They could all be used to incorporate the spirit of what the hon. Member for Stratford-on- Avon is saying, but they do not get to the nub of the matter in the way that he does.

The hon. Member for Caernarfon (Mr. Wigley) made an extremely important point about insurance-related issues. If all Conservative Members joined BUPA and one of them wanted to jump the queue, the only way he could do so would be by creating a super BUPA. The Government might regard that as a sensible market, but if we extend the logic of the point made by the hon. Member for Caernarfon by 10, 15 or 20 years and if the insurance industry operates in the way postulated by the hon. Member for Elmet, there will be no insurance industry. People will have to be grouped and risks will have to be spread, otherwise there will be no insurance industry.

The key reason why we need to ensure that nobody is discriminated against is simply that if there is potential for discrimination much of the research being undertaken within family groups will be restricted. If one member of a family group in which a particular condition is prevalent makes himself available for a test that shows that he has a predisposition that may or may not express itself in years to come, that could, in itself, result in discrimination. If we do not encourage people to participate in family group studies, our knowledge of disease and tragic conditions will be restricted. A positive way to encourage development would be to incorporate the philosophy of the hon. Member for Stratford-on-Avon within the framework of the Bill.

7.15 pm

Mr. Hague: We have had an interesting and wide-ranging debate in the middle of our proceedings this evening.

I am concerned that some hon. Members view the Bill as the solution for all discrimination. It is not a general anti-discrimination Bill; it is not even a general health discrimination Bill. Our intention in proposing the Bill is simply to tackle discrimination against disabled people.

As the hon. Member for Birmingham, Erdington (Mr. Corbett) said, the Bill aims to avoid discrimination against people with disabilities. In meeting that aim, we must carry with us employers, business and the general public. Vagueness and uncertainty will not do. Employers, businesses and individuals need to know who has rights, who can complain to the courts and tribunals and to whom those employers or businesses have duties.

The Government have had a clear policy--that the people we intend to cover are those with a physical or mental impairment that has a substantial and long-term

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adverse effect on their ability to carry out normal day-to-day activities. Those are people who are disabled in commonsense terms. There is no question about whether people with sensory impairments are included. The hon. Member for Erdington raised that subject in his speech and we have been over it in Committee. The phrasing of the Bill, and our proceedings in Committee and in the House, show, without doubt, that people with sensory impairments are included in the word "physical" when we use the definition "physical or mental impairment".

We have also ensured that people with progressive conditions are covered from the first point at which they have an effect on day-to-day activities, however slight. We have also ensured that people are covered who have impairments where the effects fluctuate or recur. We have ensured that people with severe disfigurements are covered. All those are people who are commonly accepted as having a disability.

Mr. Alfred Morris: The Minister spoke of those he must try to carry with him on the issue. He did not talk about the organisations of or for disabled people. They are concerned to see changes in the definition that he proposes. I asked him at an earlier stage in the Bill's proceedings if he would meet the Genetic Interest Group. I suggested that it would be rewarding for him as well as highly satisfactory for the group. Is he prepared to meet that group?

Mr. Hague: I met the Genetic Interest Group last week. My hon. Friend the Member for Stratford-on-Avon (Mr. Howarth) brought its director to see me and we had a valuable discussion. I shall come to the points that hon. Members have made about genetic predisposition in a moment.

Although we are extending protection to a wide range of people, a line has to be drawn about whom the Bill is for. That is not an easy task, as today's debate has clearly shown. The American experience shows that tremendous problems can be caused by involving groups with marginal connections to disability. Such problems include large backlogs of complaints, great employer uncertainty and groups rightly intended to be excluded from the legislation managing to complain by claiming that they have a reputation of having a disability. We recognise, however, that there is serious concern, which has been voiced this evening by my hon. Friend the Member for Exeter (Sir J. Hannam), about discrimination against people who have had a disability, but who have recovered. MIND--the National Association for Mental Health--has put the case for people who have recovered from mental illness. Other groups and individuals have made their strong views clear, including my hon. Friend the Member for Exeter. After careful consideration, the Government have accepted that the Bill should confer protection against discrimination on people who have had a disability that meets the Bill's definition.

We cannot, however, accept the amendments because we must consider the implications of the change, not just for the definition but for the Bill as a whole. We will table appropriate amendments in another place and I hope that, on that basis, my hon. Friend the Member for Stratford-on-Avon will feel able to withdraw the relevant amendment concerning history of disability.

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Amendments Nos. 13 and 17 would bring people with latent conditions and genetic predispositions within the scope of the Bill. I have given the matter a great deal of thought and I had a very useful meeting with the director of the Genetic Interest Group last week. I accept that some serious ethical issues arise from the advances in genetic screening techniques and that there is potential for discrimination--which I strongly oppose--against people with certain genetic predispositions. However, to include people with latent conditions or genetic predispositions in the Bill would open up the legislation to vast numbers of people who are not, and may never be, disabled.

I am advised that the human cell has an estimated 100,000 genes. As we are able to identify, isolate and test for more of those genes--the point made by my hon. Friend the Member for Elmet (Mr. Batiste)--it has been estimated that we will all be found to carry a complement of potentially lethal mutations, which is a sobering thought even for this place. In about 10 years' time, the Bill, which is designed to provide protection for disabled people, could cover the entire population of the country.

I understand that the effects of those potentially harmful genes do not always manifest themselves and that many individuals who carry a particular trait will never show any effects of it. I am also advised that the predictive power of genetic testing is, with few exceptions, likely to remain uncertain. No screening test will be 100 per cent. reliable. For example, the well-publicised cystic fibrosis test cannot detect all the mutations; at best, it can be only 80 per cent. reliable and both false positive and false negative results can be expected.

In other words, except in a few well-publicised cases, genetic tests are not as yet a useful indicator of future actual disability. Their inclusion would open up the Bill to large numbers of people who are clearly not, and may never become, disabled.

Dr. Bray: If what the Minister says is correct--and his remarks have great force--would it not be reasonable for the Government to say that, in certain named conditions where the likelihood is more than about 10 per cent., it would be wrong to discriminate? That suggestion is clearly not made in the amendment, but the Minister could say that he will examine the possibility of such a proposal before the Bill goes to another place.

Mr. Hague: With that suggestion, the hon. Member for Motherwell, South (Dr. Bray) takes us into a whole new area of creating an arbitrary distinction about which there would be further room for debate. I understand the points that he and other hon. Members, such as the hon. Member for Caernarfon (Mr. Wigley) and my hon. Friend the Member for Stratford-on-Avon, have expressed in that area. However, we cannot wander into a situation whereby, for some reason or another, potentially the entire population could claim protection under the Bill.

I do not believe that the Bill is the right place to address those concerns --which go much wider than issues relating to discrimination, as I think my hon. Friends the Members for Reading, East (Sir G. Vaughan) and for Pudsey (Sir G. Shaw) said in interventions. The House will now be aware of the inquiry by the Select Committee on Science and Technology into human genetics. I

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understand that the Committee is currently addressing a number of the concerns raised by hon. Members and that it will report later this year. The Government will want to look very carefully at the Select Committee's findings and recommendations before deciding whether specific action is called for. That will provide a valuable opportunity to consider the issue in the round, including the points that have been raised in the debate.

I assure my hon. Friend the Member for Stratford-on-Avon that the Government do not intend to ignore those issues. The Government's door will be open for further discussions not only about the specific issue that he has raised tonight, but about the wider issues that have been raised as a result of what we know about those matters to date. I think that is the sensible way for the Government and the House to proceed.

To accept all the amendments that have been proposed would change the Bill from a disability Bill into a general health Bill, which would dilute its effect in protecting people who are commonly understood to be disabled. I hope that the whole House will welcome the statement that I have made about including people with a history of a disability in the Bill.

I turn briefly to the Government amendments that are grouped with the amendment which was moved by my hon. Friend the Member for Stratford-on- Avon. As hon. Members know, the Bill is designed to eliminate discrimination against people with a disability that has a substantial long -term adverse effect on normal day-to-day activity. We have always intended that the Bill should cover people who are terminally ill and who may not have 12 months to live. However, it became clear in Committee that that might not be the effect. Therefore, in order to avoid any doubt or confusion, I have tabled amendments Nos. 98 and 99, which clearly cover people who have fewer than 12 months to live.

Many of the other amendments are drafting changes, but I particularly draw attention to amendment No. 129, which introduces the term "concentrate" into the list of normal day-to-day activities. It is a very important amendment which ensures that people with certain conditions, such as schizophrenic disorders, will be covered by the Bill.

In addition, we are aware that there is potential for confusion because the Mental Health Act 1983 also uses the term "mental impairment". The Mental Health Act definition is too narrow: it does not cover learning disabilities unless they constitute an impairment associated with abnormally aggressive or seriously irresponsible conduct; it does not cover mental impairments arising from injuries later in life; and it has no long- term element. As the purposes of the two Acts are quite different, we believe that it will be helpful to make the difference in the definitions apparent. That is why we have tabled amendment No. 127.

The final Government amendment to which I shall refer is amendment No. 132, which makes it clear what is meant by "progressive condition". As I said in Committee, the Bill is about people who have the symptoms and signs of a disability--and it will now be about those who have had them in the past. However, as symptoms are rather subjective, we have decided to adopt the same approach that we used to define a disability and refer to effects on normal day-to-day activities.

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This is a very difficult area. We have to draw the line somewhere in the definition and I think that we have drawn it in a sensible place, although the Government are prepared to move the line for people with a history of an actual impairment which meets the terms in which impairment is defined in the Bill.

My hon. Friend the Member for Stratford-on-Avon has expressed legitimate fears. I hope that he will be encouraged by my assurance that the Government's door is open to discuss these matters in the round. We certainly look forward to the report of the Select Committee later this year, which will draw attention to many more of those issues.

Mr. Alan Howarth: With the leave of the House, I shall make some quick observations.

I am grateful to hon. Members who, in some considerable number, have taken part in the debate, which has proved extremely helpful and valuable. I am particularly grateful to the hon. Members who supported me on amendment No. 13--notably, the hon. Member for Motherwell, South (Dr. Bray), whom I like to think of as my old sparring partner rather than my opponent across the Dispatch Box, and the hon. Members for Cambridge (Mrs. Campbell), for Ellesmere Port and Neston (Mr. Miller) and for Caernarfon (Mr. Wigley), who made very constructive and helpful speeches.

I reassure my hon. Friend the Member for Pudsey (Sir. G. Shaw) that there is no question of raising unreal hopes and fears of the kind and on the scale that he anticipated. I am grateful to my hon. Friends the Members for Reading, East (Sir G. Vaughan) and for Elmet (Mr. Batiste), who have given careful thought to the issues. I agree with my hon. Friend the Member for Elmet that predisposition to a disorder is not of itself a disability, but we are dealing with the attitudes of those who think that it is. He is worried that the clause might apply to a large number of people; I do not mind that in the least. Legislation dealing with discrimination on the grounds of race or gender quite rightly protects the whole population and, equally, all people should be protected from discrimination on the basis that they are perceived to be disabled.

The evil against which we seek to act is discrimination by ignorant and prejudiced people. My hon. Friend the Member for Elmet cited Professor Modell and was worried that the amendment might entail positive discrimination, but it would not. It would not entail the conferring of particular privileges on a particular section of the population--that is not what I am arguing for.

7.30 pm

My hon. Friend the Member for Elmet was worried that we might be making a piecemeal judgment, acting somewhat impetuously to deal with one small part of a much larger complex of problems. I acknowledge that, but we have a clearly defined evil that is made more likely--unintentionally, of course-- by the Bill, and my amendment proposes a remedy for that.

I am most grateful to my hon. Friend the Minister for enabling me to meet him and Mr. Alastair Kent, the director of the Genetic Interest Group. I welcome the commitment that he was able to make about including in the protection of the Bill those who have a history of disability. That is a most constructive and important advance, and I am sure that the whole House appreciates

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it. I am sorry, however, that he was not able to offer a more positive response to my amendment on the particular issue that it addresses, because he has recognised--for which I am grateful --that there are serious ethical issues and that we risk exposing people who suffer from latent conditions and genetic predispositions to unacceptable discrimination.

My hon. Friend the Minister said how strongly he would oppose such discrimination. He is worried, however, that my amendment would open up the situation too widely. I have indicated why that is not an anxiety for me, but I recognise that, if it is a problem for the Government, it is worth looking again at drafting an amendment that might remove that unfortunate effect from the Bill. I will, along the lines suggested by the hon. Member for Motherwell, South and with the Genetic Interest Group, look to see whether it would be possible to narrow the compass and the effect of the amendment to an extent. My hon. Friend the Minister suggested that that might not be a suitable approach, but it would be analogous to the approach that the Government have adopted in the Social Security (Incapacity for Work) Act, where specified medical conditions exempt people from having to undergo the medical test. We are therefore not in entirely uncharted territory, for all the differences between the two situations. I still maintain that there is a problem and that it is important to address it within the proposed legislation. I welcome the constructive willingness of my hon. Friend the Minister to look seriously at these issues, but I do not think that it will be satisfactory to leave it to subsequent legislation. I hope therefore that it will be possible for all concerned to look again at the drafting of an amendment that might meet my hon. Friend's genuine concerns, and that a new amendment will be tabled in another place. I hope that the Government will be able to favour it.

With the leave of the House, I beg to ask leave to withdraw amendment No. 13.

Madam Deputy Speaker (Dame Janet Fookes): We are dealing with amendment No. 12, so there is no need to seek to withdraw amendment No. 13, because it has not, technically, been moved.

Mr. Howarth: I beg to ask leave to withdraw the amendment. Amendment, by leave, withdrawn.

Schedule 1

Provisions Supplementing Section 1

Amendments made: No. 98, in page 28, line 16, leave out `or'. No. 99, in page 28, line 18, after `months', insert `; or (c) it can reasonably be expected to last for the rest of the life of the person affected'.

No. 100, in line 35, leave out from `having' to end of line 36 and insert `that effect'.

No. 128, in line 40, after `affect' insert

`the ability of the person concerned to carry out'.

No. 129, in page 29, line 3, after `to' insert `concentrate,'. No. 130, in line 7, after `affect' insert

`the ability of the person concerned to carry out'.

No. 131, in line 10, after `affect' insert

`the ability of the person concerned to carry out'.

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No. 132, in page 30, line 2, leave out from `Where' to end of line 13 and insert `--

(a) a person has a progressive condition (such as cancer, multiple sclerosis or muscular dystrophy),

(b) as a result of that condition, he has an impairment which has (or had) an effect on his ability to carry out normal day-to-day activities, but

he shall be taken to have an impairment which has such a substantial adverse effect if the condition is expected to result in his having such an impairment.'.

No. 133, in line 14, leave out `Act' and insert `paragraph'.-- [Mr. Hague.]

Clause 5

Circumstances in which less favourable treatment is justified

Amendments made: No. 71, in page 3, line 30, leave out `be' and insert `have been'.

No. 72, in line 31, after `believe' insert

`, at the time of the treatment in question,'.-- [Mr. Paice.]

Clause 6

Duty of employer to make adjustments

Amendments made: No. 120, in page 4, line 14, at end insert-- `( ) The following are examples of steps which an employer may have to take in relation to a disabled person in order to comply with section (1)--

(a) making adjustments to premises;

(b) allocating some of the disabled person's duties to another person;

(d) altering his working hours;

(e) assigning him to a different place of work;

(f) allowing him to be absent during working hours for rehabilitation, assessment or treatment;

(g) giving him, or arranging for him to be given, training; (h) acquiring or modifying equipment;

(i) modifying instructions or reference manuals;

(j) modifying procedures for testing or assessment;

(k) providing a reader or interpreter;

(l) providing supervision.'.

No. 121, leave out lines 29 to 35.-- [Mr. Paice.]

Clause 7

Exemption for small businesses

Amendment made: No. 122, in page 5, line 13, leave out from `substituting' to end of line 14 and insert

`a different number (not greater than 20) for the number for the time being specified there.'.-- [Mr. Paice.]

Mr. Wigley: On a point of order, Madam Deputy Speaker. You are going through the amendments at a rate of knots, but I expected the Government to explain some of them. Some of them are purely technical, but amendment No. 120 is substantial and has gone through on the nod without any explanation. That is an unsatisfactory way of dealing with business.

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