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Lord Carter: My Lords, the noble Lord, Lord Swinfen, explained the arguments behind the amendments extremely well. He quoted from the report published only today of the Science and Technology Committee of the other place entitled Human Genetics: The Science and its Consequences. The sections of the report which the noble Lord quoted and others bear extremely well on the argument in favour of the amendment. For example, in paragraph 220 the report states:

There is evidence from a witness to the committee which is extremely relevant. Professor Modell says:

    "It would be illogical and inequitable to permit discrimination against healthy people with a genetic predisposition to disability, while at the same time excluding discrimination against those already disabled".

As the noble Lord said when he moved the amendment, the report says:

    "We believe that genetic discrimination may happen inadvertently, and should be prevented. There must be some mechanism to do this".

On insurance, the suggestions were in three parts:

    "Insurance companies should not ask for any information on genetic tests at the time the contract was made. If the insured dies of a genetic disease on a list maintained by an appropriate authority as predictable by a genetic test, then the sum paid by the insurance company need not exceed a ceiling specified at the time of the contract. Insurance companies would re-insure an industry pool against the risk of deaths from genetically identifiable causes on the list".

It is an excellent report. It is a complex area. All that the noble Lord seeks to do is to leave a gateway in the Bill to enable later legislation, regulation, or whatever seems appropriate, to deal with the matter. If we leave the issue alone, it will raise enormous problems for people who have a genetic predisposition but are not disabled. If the Government do not intend to deal with the issue in this Bill, they will have to indicate how they intend to deal with it in other legislation.

To be fair, the Committee states that it is not sure that this Bill is the right way to deal with the issue. It is suggested that a privacy Bill would be a better way. Yesterday we heard the combination of handwringing

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and chickening-out that the Government are indulging in over a privacy law. It is extremely important that we make some provision in this Bill.

Baroness Masham of Ilton: My Lords, I find this a most interesting subject. I should like to ask the Minister this question: what existing legislation covering privacy of people deals with medical confidentiality? There is concern about fax machines, with information passing from doctors and hospitals being left in fax machines.

Perhaps I may ask another question about haemophiliacs and the workplace, and health and safety issues. There must be some legislation covering those aspects at the moment. It is necessary to ensure that the legislation that we are now discussing does not complicate other legislation.

Baroness Darcy (de Knayth): My Lords, perhaps I may briefly but warmly support the amendment. It is an area where things are moving very fast. The noble Lord, Lord Carter, referred to the report of the Select Committee on Science and Technology in another place. I heard the subject referred to on the radio this morning. In the same breath an item was mentioned regarding a semi-do-it-yourself kit for testing for the cystic fibrosis gene.

It would be a wise move to have this enabling amendment in position. I hope that the Government will show their wisdom by accepting the amendment, or by bringing a provision of their own back at Third Reading.

Lord Mackay of Ardbrecknish: My Lords, I am pleased to be able to address this important matter because, as your Lordships will be aware, it was debated at some length in another place and briefly touched upon during our own Committee stage.

Scientific advances in our understanding of human genetics have opened up complex moral and practical issues which will need to be looked at very carefully and in the round. I do not think that these issues can be picked off bit by bit. I believe that the implications go a great deal wider than the discussions that we are having this evening. As some noble Lords have already mentioned, the Select Committee on Science and Technology in another place has today published a report. The Government will want to look at it very carefully before considering legislation. My noble friend Lord Swinfen was quite right to presume that I had not had the opportunity today to read this voluminous report. I was rather busy reading another one from the Bank of England board. However, since I indicated to him at lunchtime that this report was published, I am rather glad that he has had an opportunity to glance through its pages. If he did so, I am sure that his eye will have alighted on paragraph 223. It was referred to by the noble Lord, Lord Carter, when he spoke about Professor Modell.

However, Professor Modell's point comes in the last three lines of a rather longer paragraph in which the Committee states:

    "There were suggestions that some genetic discrimination could be dealt with through amendments to the Disability Discrimination Bill. While we agree with the ends of those in favour of these changes, we are dissatisfied with the means proposed. It would be difficult to prove that failure to offer employment, say, was caused

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    by knowledge of a genetic predisposition to a late onset disease. Moreover, we were told that people with genetic predispositions, or who were likely to develop late onset diseases, might also be put at a psychological disadvantage if they were simply treated as disabled".

The report then goes on to give the quote from Professor Modell who was a witness.

Lord Carter: My Lords, in case the noble Lord was implying that I was attempting to mislead the House by partial quotations, I was careful to say that the report suggested that the Bill was perhaps not the best place to put such a provision.

Lord Mackay of Ardbrecknish: My Lords, the noble Lord did absolutely that. However, I just wished to underline what was said in paragraph 223. The amendment of the noble Lord, Lord Swinfen, would facilitate, he claims, future legislation. However, the noble Lord, Lord Addington, reached my point before I had the opportunity to do so. It is just as well for my noble friend that the noble and learned Lord, Lord Simon of Glaisdale, is not with us at this late hour because my noble friend would have received the same kind of lecture as I have received on a number of occasions about Henry VIII clauses. I suggest to my noble friend Lord Swinfen that his amendment seems to be the mother and father of Henry VIII clauses. I have made clear to your Lordships on a number of occasions that I am a reluctant taker of Henry VIII powers. The amendment proves no exception to my rule.

We must first think carefully about the effect the inclusion of people with genetic predispositions would have on the Bill. As I have said on a number of occasions, the Bill is intended to provide protection for people who have or have had a disability. The amendments make it entirely clear that here we are talking about people who have no disability. People with genetic predispositions do not yet have a disability and indeed may never have one. The predictive power of genetic testing is, with a few exceptions, likely to remain uncertain. No screening test is 100 per cent. certain. Having a predisposition to a condition which may or may not lead to an impairment which may or may not have a substantial effect on that person's ability to carry out normal day-to-day activities should not be deemed to be a disability as commonly understood. Nor should people in that position be covered by a Bill aimed at protecting disabled people.

Furthermore, as we are able to isolate and test for more and more conditions, it has been estimated that we will all be found to carry a complement of potentially lethal mutations. That is not to say that we all have a disability, but there will be an increasing number of us for whom it will be found, if we have the tests, that we may have a disability in the future, however slight that possibility. Are we really to envisage a situation in the future when the Disability Discrimination Bill covers the entire population?

I have said it on a number of occasions and I say again that we are trying to cater for those people whom the great public—employers and all of us—consider to be disabled. Those are the people whom we wish to help. The effect of including people with genetic predispositions in the Bill would be to increase the uncertainty among employers, service providers and

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disabled people as to who is and who is not covered by the Bill. This would undermine its effectiveness to protect the people whom it is intended to protect: those whom we all recognise as having or who have had a disability. I have been down the road on that argument before.

Another example of the uncertainty is the amendment to Clause 13 which was accepted at the Committee stage. It extended the provisions of Part III to include people treated as having a disability as defined in the Bill. In our view, that amendment has served to undermine the effectiveness of Part III, just as the amendments before us this evening would undermine the Bill as a whole. As I have done on a number of occasions, I wish to make it clear that I do not want to go down those roads. We shall seek to remove the amendment to Part III on treating people as disabled when the Bill returns to another place.

Let me repeat what my colleague said in another place on the problem of genetic predisposition. The Government will want, as will the whole House, to look very carefully at the Select Committee's findings and its 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 raised in this debate.

The noble Baroness, Lady Masham, mentioned the confidentiality of medical records. Of course, it is there. So far as fax machines are concerned, I suppose that the confidentiality of medical records is as safe from the fax machine as many confidential government documents appear to be safe. I am afraid that one of the downsides in the modern world of communication is that, just occasionally, the wrong buttons can be pressed and one's confidential piece of paper arrives in the office of the Leader of the Opposition or perhaps, as in the instance mentioned by the noble Baroness, in the office of one's insurance company. In these circumstances there is not much that can be done in the modern world except be careful about sending faxes and other pieces of information.

To sum up, I fully accept that there is a real problem here, but this is not the right point at which to address it. We have to look at this issue as it develops, and as it is reported upon in the Select Committee, and then perhaps consider what action has to be taken on a much wider front, rather than on the narrow front of this discrimination Bill.

10.30 p.m.

Lord Ashley of Stoke: My Lords, I am rather disappointed at the Minister's response to the debate. I am particularly concerned that the Government intend to show such disdain for the views of this House about perceived disability. A democratic vote is a democratic vote. I should have thought that, rather than simply announce what the Government intend to do, the Minister and his colleagues in government would take the views of all sides of the other place rather than make such an announcement today, which I am sure will disturb many Members of this House.

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I should like to get the views of the noble Lord clear and correct on this particular amendment. He states that he agrees with the ends but disagrees with the means. Is it not a fact that that is precisely the argument the Government have used against this Bill, and use against any Bill? They use that argument against any legislation on disability discrimination. They have said, "We agree with the ends, but we disagree with the means". For years they have pursued that argument. But they have acknowledged now, by bringing this Bill forward, that that argument is bogus; it is quite false.

Is it true, as the Minister stated, that the Government believe they should deal with this problem in the round, and not bit by bit? If that is so, was it not incumbent on the Minister to tell us precisely how the Government intend to do that? It is simply not good enough to say that it will be considered in the round, full-stop, end of discussion. This amendment was moved by a Conservative Peer. Both sides of this House are entitled to a statement of Government policy. The Government cannot simply say that they are not going to do anything about the issue, having said that they need to deal with it in the round. The Minister has a clear obligation to make a statement on that. I have many more points to make, but there are a lot of amendments to move before the night is over. I will leave matters there, but I hope that the Minister can give the House some kind of constructive response.

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