Human Tissue Bill

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Dr. Murrison: I take it that these are probing amendments that are designed to shed light on what I confess even for me is an unclear area of the Bill. It touches on the consent given by a minor. We have to consider two things: on the one hand, consent for purposes that may happen in the future, given on the minor's behalf by a parent, guardian or other person; and, on the other hand, consent for a procedure that occurred when someone who subsequently attained their majority was a minor. I should be grateful if the Minister could clarify those two points.

Ms Winterton: An interesting point has been raised about future notification, and I shall return to that. The amendments as tabled, which reflect the hon. Members' initial concern, are unnecessary, because the Bill makes no distinction between the quality or duration of consent obtained from a competent child, from a parent on behalf of a child, or from an adult. The Bill neither provides that consent under clause 2 ceases on the child's 18th birthday, nor requires that the child should be revisited at that time for the purposes of obtaining a further consent under clause 3.

If a parent gives consent on behalf of an incompetent child, for example to the storage and use of tissue for the purposes set out in paragraph 7 of schedule 1—for research—that consent will be sufficient for the carrying out of that activity. If it is a continuing activity, such as storage, the consent will continue to have effect until it is withdrawn by the parent, or by the child on becoming competent. Consent given by a competent child to a continuing activity will remain valid until it is withdrawn by that child at any age.

In terms of continued storage, and whether an individual child, if they had been incompetent—a terrible phrase—were to be notified—

Dr. Harris: Before the Minister moves on to that matter, may I draw her attention to a difficulty posed by line 15, which could have been the subject of another probing amendment? If line 15 were to say that, in the case of a child being incompetent, ''appropriate consent'' meant the consent of a person who ''at that time'' had parental responsibility for him, there would be no doubt that that consent was still valid. Despite the Minister's assertion, there may still be some doubt, because ''appropriate consent'' for

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continued storage and use is defined by the person, and that person no longer has parental responsibility.

Ms Winterton: We are confident that consent is valid in both instances, unless it is withdrawn by the child on reaching 18 or beyond, and it will therefore be helpful to put that on the record. The consent is valid unless it is withdrawn.

Dr. Harris: Will the Minister explain why it is stated in lines 14 and 15 that the appropriate consent is the consent of a person ''who has'' parental responsibility—using the present tense—and why it would not be better to insert the words ''at that time''? Her words will be welcome to those who seek to interpret the provision at a later date, but they do not overrule a more literal reading—indeed, the obvious reading—of those lines.

Ms Winterton: There is nothing in the Bill that says that consent ceases at the age of 18; nor does the Bill require that the child be revisited at that time for the purpose of obtaining further consent. Having given that reassurance, I hope that the hon. Gentleman will feel able to withdraw the amendment.

Dr. Harris: I wanted to intervene earlier. I sought to do so before the Minister went on to address in detail the issue of notification, and whether there will be a requirement to notify. I am seeking clarification as to whether, when she said that she would return to the matter, she meant that she would do so during our consideration of this group of amendments or later. I hope that by intervening I did not put her off from continuing to make remarks in response to the other points that I raised. If now is not an appropriate time, perhaps we will have an opportunity to deal with these matters in a brief clause stand part debate. There is a question about whether people who did not give their consent at the time—because it was given on their behalf—but later gain competence, should be notified if there is identifiable material being stored and/or used.

Ms Winterton: There is no particular way in which people would be notified unless their parents or doctors had told them that this was the case. If they understood that something had happened to which they objected, they would have the ability to withdraw their consent.

Dr. Harris: That is a useful explanation of the Minister's understanding—that where the knowledge exists, people will have the ability to withdraw their consent. The key question asked by many who feel strongly about the issue is whether they would ever know without being able to contact and get an answer from the person who gave consent on their behalf. Again, I accept that that question is not necessarily directly dealt with by the amendments, but it is something that we may wish to think about, to ascertain whether the position is satisfactory. In the light of the Minister's assurance, I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn

Dr. Harris: I beg to move amendment No. 112, in

    clause 2, page 3, line 34, at end add—

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    '(7) In the case of transplantation, consent shall include evidence of a signed organ donor card or registration on the NHS Organ Donor Register.'.

The Chairman: With this it will be convenient to discuss the following:

Amendment No. 150, in

    clause 2, page 3, line 34, at end add—

    '(7) In the case of transplantation, consent shall include an affirmation on any instrument that the Human Tissue Authority may determine.'.

Amendment No. 113, in

    clause 3, page 4, line 23, at end insert—

    '(5A) In the case of transplantation, consent shall include evidence of a signed organ donor card or registration on the NHS Organ Donor Register.'.

Amendment No. 151, in

    clause 3, page 4, line 23, at end insert—

    '(5A) In the case of transplantation, consent shall include an affirmation on any instrument that the Human Tissue Authority may determine.'.

Dr. Harris: This group of amendments—in which there are two analogous amendments; one tabled by me and the other by the hon. Member for South Cambridgeshire—deals with the question of what consent is, both in terms of clause 2, dealing with children, and clause 3, dealing with adults. Perhaps it is easier for our purposes, since they are effectively identical, to deal only with the amendment to clause 2, and the insertion of the proposed subsection (7). It is effectively a probing amendment to clarify whether that is the understanding.

I agree that amendments Nos. 150 and 151 are more relevant in this instance, because I do not think that we would want to place on statute terms that can be transient. Probing amendments should not use such terms where that can be avoided. I am not suggesting that, in tabling his amendment, the hon. Gentleman believes that the opt-in donor card and the NHS organ donor register will not be with us for a long time. However, I recognise that it is better to keep the exact limits of the instrument as vague as is done in amendment No. 150.

The issue of whether consent would include that was raised a number of times on Second Reading. I think that what was really being investigated at that stage was whether—where there is written consent of that nature, and it is deemed to satisfy the requirements of clause 2—that in itself is sufficient to allow donation to take place. The answer appears to be yes and no, because while it is sufficient, it does not require doctors to follow that consent. There may be many reasons why they do not. Even after the time when consent is confirmed—I use that term loosely—by the family, there may be medical or practical contra-indications to consider before transplant. Clearly, consent is not a requirement. The current position is that where consent exists, it is still possible for relatives to withhold their consent. It appears, unpractised, to trump the signed, informed consent of the person seeking to donate.

On Second Reading, the Government said that the question was about not relatives refusing to give consent, but intervening factors, such as distressed

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relatives, which means that doctors exercise their discretion not to take the organs even though someone's life might be saved and it is the wish of the person seeking to donate.

10.30 am

Dr. Murrison: The hon. Gentleman probably shares my concern about the availability of organs and the possibility that, with consent having been given on a donor card, for example, consent might be overturned on consultation with relatives. He will have noted, as I have, on the website of UK Transplant that such an eventuality is ''virtually unknown'', and that his point is therefore academic.

Dr. Harris: I am not sure that it is so unknown these days. Research that I have seen shows that, in about 1 per cent. of cases in which the person concerned was known to have opted in under the donor card system, relatives have refused consent.

I met representatives of UK Transplant to discuss the matter, who told me of several cases—nine were mentioned—of relatives not giving consent even though the person was on the organ donor register. Nine would be 1 per cent. of 900; clearly nine is not vanishingly rare. It is a live issue, particularly given the publication of the potential donor audit by UK Transplant, which showed that relatives were saying no in 48 per cent. of cases. Although we do not have the exact information, that figure is bound to cover some people who are on the organ donor register. About 17 per cent. are on the register, so it would be bizarre if that 17 per cent. were all included in the other 52 per cent. of cases.

I have read what the Minister said on Second Reading, and I understand that where there is a donor card, written consent as outlined in clause 3 or registration on the organ donor register, she does not plan to allow the taking of organs and the saving of lives where there is no medical contra-indication to doing so but where relatives object. I understand the position, although it is sad. We do not necessarily need to discuss the matter in Committee; it was an issue on Second Reading and it is possibly one for Report and Third Reading.

My organ donor card states not only that I give consent for my organs to be used, but that it is my fervent wish that on no account for non-clinical reasons—where there is no medical contra-indication—should anyone be able to overrule that consent. I am still concerned that—in my case if a relative can be found who is prepared to own up to being such—the danger remains that my valid, written, informed and advance consent would be overruled. I do not know what legislative scope exists to deal with that problem. I hope that we can probe the matter through the amendments.

 
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