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Baroness Finlay of Llandaff: I want to say for the record that I was not implying that the Minister was wrong. I was signalling that the Bill influences the guidance and the guidance influences the message which goes out to the profession. The professional guidance affects their registration. That is what they adhere to and that is what will pull them up short. The amendment is about the way that a decision is made and that means it must be properly recorded in the case records and so forth. In going back to audit the notes, one would then be able to compare and make sure that there was no discrimination.
Baroness Ashton of Upholland: I am grateful to the noble Baroness. Legislation is not the only way to influence the code because my commitment to alter it is absolute. We will do that. I will happily discuss whether we can do more, but say simply to the noble Baroness, Lady Barker, that I cannot accept this amendment because I cannot do so without all the other things that are required.
Baroness Barker: I must confess that in my preparation for the Bill I did not come prepared to discuss Papal Bulls and, by the absence of my noble friend Lady Neuberger, neither did I come to discuss rabbinical law. However, I want to begin by addressing the key, important points made by the noble Earl, Lord Onslow.
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My noble friend Lord Goodhart perhaps made the point for me. In response to the noble Lord, Lord Walton of Detchant, citing the evidence given to his Select Committee, my noble friend Lord Goodhart said that not all Jewish people would agree on that interpretation of rabbinical law. There we come to the point because one must look at the amendment also in relation to Clause 4(6), mentioned by the noble Lord, Lord Carter. It is the duty in the case of any individual to examine the person's past and present wishes and feelings, beliefs and values.
The point I seek to make was put forward by the noble Baronesses, Lady Finlay and Lady Greengross. There is a need to enshrine in law that anyone making an assumption about an individual on the basis of his membership of a particular group is no longer acceptable. The fact that one may establish that someone was a member of a particular faith may be a starting point from which to go on to determine under Clause 4(6) that individual's wishes and feelings, but it is not acceptable to stop at that initial point.
The second point I want to address was made by the noble Lord, Lord Carter. There is read-across between some of the discrimination legislation, but it is not sufficiently tight for this legislation to be acceptable.
I make my third point to the Minister. I do not accept that it is not possible to include a principled statement of this kind without constructing an implementation framework around it. The implementation framework for those principles is the rest of the Bill. That principle must be reflected, as do all the others, in all the mechanisms outwith the Bill. It is about the application of anti-discrimination legislation. I do not therefore believe that it is never possible to take anti-discrimination principles and to insert them into other legislation as a factor. This is perhaps a very good place in which to start.
I also say to the Minister that whether the department chooses to accept a similar provision on this occasion, the problem will not go away. It will return in other future legislation. That is because in different areas of life practitioners have moved on from the anti-discrimination legislation of years gone by and have begun to apply that. Anti-discrimination measures of this kind will continue to be principles which people seek to work into applications in other fields. And that is how it should be because discriminatory behaviour, or legislation about it, cannot for ever sit in some separate entity that is tied up in terms of anti-discrimination. It must begin to be reflected in different areas of life.
Therefore, while I accept that the Minister may consider my amendment inelegant, I do not accept her argument. I would greatly welcome the opportunity to meet her and her advisers to see whether in some way we can achieve what we are trying to edge towards.
I also agree with the noble Baroness, Lady Finlay, that it is important not only for clinicians and practitioners to know, but also for patients to have the wherewithal to call them up short. The noble Baroness might be frightened of doing so, but patients should not be.
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It is because of the strength of feeling on this issue, particularly among people who have disabilities, that, although I shall withdraw the amendment at this stage, I shall not let it go without a further fight. I beg leave to withdraw the amendment.
That all sounds entirely rational. But the phrase "at the material time" is where there may be room for confusion, because it is unclear when the material time might be. Is it when the person is incapacitated or could it be some time before, for example, when they make an advance directive?
I also raise this matter because of a potential conflict with Clauses 30 to 32, with which we will deal later. They set out all the safeguards and conditions under which research may be undertaken on patients lacking capacity. It could be taken that the wording in Clause 2(1) is paramount and takes precedence over later provisions.
It may be helpful if I gave an example of some of the effects. I gave this example at Second Reading, so I shall be brief. A patient has a fluctuating illness, say manic-depressive psychosis, in which his mental capacity fluctuates. It is entirely conceivable that such a patient, when he is well, will want research done on his condition and will give consent for it to be done then and in the future when he is incapacitated. The wording here might appear to prevent that consent being accepted, as it was not given at the material time. I can give other examples, including the UK Biobank project, where 500,000 people are being sought to give consent for research that will go on for 20 or 30 years. What happens to that research if and when someone becomes incapacitated? That person may be seen as not having the opportunity to opt out at any time that others have.
I recognise that the wording in this clause may not have the interpretation that I am giving to it. But the problem is that the wording may be confusing to those who have to take note of it: research ethics committees and researchers. Ethics committees will always, quite reasonably, lean to the cautious side where there is any possible conflict in interpretation. If my amendment is not acceptedalthough I hope my noble friend will
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accept itI hope that, at the very least, research ethics committees will be given clear guidance in the regulations, as I think is suggested in the amendment of the noble Earl, Lord Howe, or in the guidance notes, or, even better, in both. I beg to move.
Earl Howe: My Amendment No. 5 is grouped with the amendment of the noble Lord, Lord Turnberg. It was designed to achieve the same purpose, which is to flag up the concerns that he has so ably expressed. It may be of assistance to the Minister to know that these concerns have been raised with us by respected bodies that are genuinely unclear about what the Bill means. Those bodies include the Academy of Medical Sciences, the MRC, the Royal College of Physicians and the Wellcome Trust.
Like the noble Lord, Lord Turnberg, I do not want to anticipate our later debates relating to research on incapacitated people. However, to take his example, if someone with manic depression who had agreed while mentally competent to take part in a research project then loses capacity and at that point expresses a wish to withdraw from the project, what position does that place the researcher in? The person may have explicitly said that if, when he was manic, he stated an objection to continuing to take part in the project no notice should be taken of what he said. But can a researcher rely on that instruction? The more I look at this clause, the more I agree with the noble Lord, Lord Turnberg, that greater clarity might be helpful.
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