Human Tissue Bill

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Dr. Harris: Data are available on the excellent UK Transplant website, which sets out those figures. Reasons have been given for the dramatic fall in the number of strokes and road traffic accidents in the past two years. Clearly, that is a factor, but the fact that one line is going up while the other, sadly, is still drifting down should be of even greater concern than issues such as ICU beds, which are supposed to be going up, not down.

The point that the Minister used in defence would be fair if the number involved were tiny. I counted four occasions—and one for the hon. Member for Westbury—on which she said that in only 1 per cent. of cases did relatives say no where there was an opt-in on the register or donor card.

Ms Winterton: The hon. Gentleman makes assertions about numbers going down. The reality is that the number of donations has gone up by about 6 per cent. Cornea donations have gone up more in some areas—by 12 per cent., I think. I shall write to him with the figures, but following the publication of the framework and the other measures that have been taken there has been an increase.

Dr. Harris: The 6 per cent. increase was in the annual report for 2002–03. I fell into the trap of using the latest data, not the last data that showed an increase. The latest data presented to me—for 2003–04 to date—showed, at least until June 2003, a 12 per cent. reduction in organ donors. I hope that the data are now available to September 2003. If the Minister is to write to us with the data, which will inform later parts of the debate, it would be helpful if she gave us the most up to date figures.

As the Minister and the hon. Member for Westbury referred to the figure of 1 per cent., I would be grateful if she wrote as soon as possible, giving the basis for it and showing how the latest authoritative data from the excellent potential donor audit support the figure of 1 per cent., because that is not what I have seen. I was presented by UK Transplant with a figure of 11 cases in which the organs of people on the register had not been used—in most cases, if not all—because the relatives refused consent. That does not sound like 1 per cent. of any figure.

I simply ask the Minister to write to me this afternoon to clarify where the 1 per cent. figure comes from. If she can do that, I shall say that the proposal is probably not worth the candle, but I still believe that 11 lives in one section of a year are a significant number that we should be concerned about.

Dr. Murrison: I think that the record will show that I did not use the figure of 1 per cent. at any time in my contribution. However, I quoted UK Transplant in saying that this situation was virtually unknown in practice and made a judgment based on the figures that it gave. If UK Transplant says the situation is virtually unknown, we need to take cognisance of that.

Dr. Harris: I understand. If the Minister can send us information saying that UK Transplant's figures show that the situation is virtually unknown, or involves

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1 per cent. or a tiny number of cases, she is right to take her present position on the issue.

Ms Winterton: The hon. Gentleman referred to 11 people, and said that the organs of most of them were not used. I suggest that that is quite a low number when the relevant figure is, I think, about 6,000, although I am not certain of that. His figure would not necessarily indicate that the total is so far removed from that.

Dr. Harris: Then I would be grateful if the Minister provided the data showing that the 11 donors on the organ donor register in whose cases transplantation did not proceed were 11 out of several thousand, not several hundred. If that is the case, she is right in saying that it is probably not worth—[Interruption.] Does the hon. Member for Norwich, North (Dr. Gibson) wish to intervene?

Dr. Gibson: I dispute the hon. Gentleman's figures. They come from a biased source, but we will unravel this when we obtain the official figures.

Dr. Harris: I could not hear that sedentary intervention and translate the accent. The hon. Gentleman will have to forgive me, although I am grateful to him for clarifying his point.

All I am saying is that there are figures, which should be made available to the Committee. If they show that the cases involved are a tiny minority, it may be right that we do not push the issue further. In the light of what the Minister said, I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Question proposed, That the clause stand part of the Bill.

Dr. Harris: Is the Minister able to discuss notification at this point, or is she planning to do that in another way? Should adults who had organs taken as a child with consent from someone else be notified when they come of age so that they can exercise their right under the Bill to withdraw that consent where there is identified stored and used tissue?

Ms Winterton: I hope that I can be of some help. We would expect parents to tell their children that the Bill does not provide for notification. There are some issues about practicality here. People carrying on activities regulated by the Bill are thankfully entitled to assume that consent endures until they have been given notice that it has been withdrawn, even though the right to withdraw may have passed to the child. The point is interesting, but this is a practical issue. It would be difficult to find a method of notification that did not produce undue burdens.

The Human Tissue Authority might be able to emphasise in guidance to parents the fact that if they are making a donation we would expect them to tell children that that had happened so that they had the right to withdraw consent. It would be too burdensome to say that every birthday had to be recorded and that such people had to be informed in writing that their donations were still in storage.

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Dr. Taylor: The Minister had the answer herself. That is exactly the sort of thing that could go on to the electronic patient register when it is put in place. When a young person turns 18, as well as the keys to the front door, their electronic patient record can be handed to them so that they know what has happened.

Ms Winterton: The hon. Gentleman makes an important point that will be clear in the future. In the meantime, there are too many practicalities, but I hope that the HTA may be able to help.

Question put and agreed to.

Clause 2 ordered to stand part of the Bill.

Clause 3

''Appropriate consent'': adults

Mr. Lansley: I beg to move amendment No. 90, in

    clause 3, page 3, line 40, at end insert—

    '(2A) In relation to the purposes in paragraph 7 in Schedule 1, where it is not contrary to his interests and would benefit persons with the same or similar conditions, a person who stands in a qualifying relation to him can consent on behalf of an adult who lacks the mental capacity to make decisions on his own behalf.'.

The Chairman: With this it will be convenient to discuss the following: Amendment (a) to the proposed amendment, in

    line 1, leave out 'paragraph' and insert 'paragraphs 3, 5 and'.

Amendment (b) to the proposed amendment, in

    line 2, leave out 'would' and insert 'might'.

Amendment No. 91, in

    clause 24, page 15, line 24, after '(ii)', insert '3(2A)'.

11.15 am

Mr. Lansley: During the consultation that led to the framing of the Bill, the question of what should happen in circumstances where someone lacks the capacity to give consent was considered. The law does not permit someone to give consent to treatment on behalf of another adult. By extension, therefore, the structure of consent does not allow someone to give consent for the retention of tissues and organs on behalf of another adult.

The consultation went on to consider the question of best interests and non-therapeutic research. Taking it step by step, the best interest criteria include the fact that a clinician dealing with someone who cannot give consent, or who does not have the capacity to do so in relation to therapy, can treat that patient if it is in the patient's best interests. However, something that is not concerned with the treatment of that patient would not necessarily satisfy the definition of best interests.

The consultation also considered the Council of Europe convention on human rights and biomedicine, which recognised the fact that non-therapeutic research on a person not able to consent would be ethical—I think it should have said ''could'' be ethical—if strict safeguards were applied. A document, ''Who Decides? Making Decisions on Behalf of Mentally Incapacitated Adults'', was based on the work of the Law Commission. It considered that question and observed that non-therapeutic research could improve understanding of the

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condition from which a patient suffers, and may assist fellow suffers in future.

The consultation pointed to a consensus that non-therapeutic research could be justifiable if it was concerned with the condition from which a person without capacity suffered and if the procedures involved minimal risk and invasiveness. The commission's recommendation was touched upon on Second Reading. If my recollection is correct, the Minister said that that would be dealt with in the draft Mental Incapacity Bill. However, in this Bill we are setting the legislative framework for the retention of organs and tissues.

On the face of it, we were surprised that the issue was not being dealt with in this Bill, given the recommendations of the Law Commission. Amendment No. 90 is designed to achieve that. It would provide for occasions on which an adult who lacked the mental capacity to make a decision needed a person in a qualifying relationship to give the appropriate consent for him. Amendment No. 91 to clause 24 links up with the subsequent definition of qualifying relationship, and is merely consequential.

Amendment No. 90 refers to this process being ''not contrary'' to that person's interests—that is in relation to the ''minimal risk and invasiveness''—and to whether it would

    ''benefit persons with the same or similar conditions''.

A test therefore has to be met, and we propose that it should relate specifically to medical research under paragraph 7 of schedule 1 in connection with disorders of the functioning of the human body, rather than the wider ones proposed separately by the hon. Member for Oxford, West and Abingdon. We decided at that point to try to implement the Law Commission's intentions.

If Ministers and the Committee are not persuaded to include that provision now, we can at least explore Ministers' intentions in relation to the Mental Incapacity Bill, so that in due course people can see the whole framework of legislation.

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