Human Tissue Bill

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Dr. Harris: I agree with the Minister. Does she accept that there must be a balance between providing sufficient information and not putting people off by being too gruesome? One way to move that balance towards the provision of more information would be to demystify some of the issues surrounding the human body. In that respect, the ''Bodyworlds'' exhibition and the plans to broadcast operations to consenting adults who wish to see them seem a good way forward and might put an end to the fear and mystery that surround the human body and the yuck factor, which are a barrier to research.

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Ms Winterton: That is an interesting idea. However, we are talking about people in very difficult circumstances. We must adhere to the principle—I know that all hon. Members do—of informed consent and maximum information, but with sensitivity to people's needs. As the hon. Member for South Cambridgeshire said, in some circumstances people may not wish to know all the details. As long as we are sure that somebody has made the decision not to be told them, that is the way forward.

It is an important issue that, for many hon. Members, goes to the heart of the principles in the Bill, but I hope that I have been able to give the reassurance that they sought and that the hon. Gentleman will seek to withdraw the amendment.

Mr. Lansley: I am grateful to the Minister for taking the trouble to explain in detail why the Government do not support the amendment. There is a substantial difference in structure between the Bill's provisions and what the amendment proposes. In order to define consent in the Bill, we would have to engage in the process of creating a new statutory framework for consent as opposed to a common law definition. There would be dangers in going down the path of carrying out a little bit of statutory definition and trying to mesh that with common law.

I am happy with the argument relating to overall structure. That does, however, place a special burden on codes of practice to deal with the issues of substance so that no one is in any confusion about what is expected in the obtaining of valid consent, even if it does not include a legal definition. That leads us to amendments Nos. 3 and 4. There are difficulties with including a definition, which is why I rested on what was in previous legislation, which was designed for a different purpose. The Bill deals with a range of purposes for which organs and tissues are being retained.

The Minister referred to paragraph 43 of the current code of practice, which states that

    ''the discussion must make clear to the family the meaning of the term human tissue; that it includes organs, parts of organs and tissue in various forms, such as frozen sections and samples fixed in paraffin wax''.

That is true, but it highlights the problem. One might have a discussion in which one makes it clear to families the meaning of the term ''human tissue'', but when one examines the standard consent forms in the code of practice—I am not saying that the forms are not best practice; they seem to work in the right way—one finds that the forms, such as the one relating to a baby or child, make it clear that there is consent for the post mortem examination, and consent for the donation of organs for medical research, education or audit.

It is curious that there is a distinction in the forms between medical consent for tissues in section 3 of the form and the donation of organs for medical research in section 5(b). I want to make it clear only that codes of practice will not do their job if they do not clearly reflect the distinction that has to be made between tissues, samples and whole organs. We may not include that in the Bill, but we have to be clear—it would be helpful if the Minister were to confirm this—

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that the HTA will not do its job if the discussion does not clarify what ''human tissues'' means. It must also deal with the distinction between tissues and organs in relation to the question of retention so that the consent process makes clear the meaning of ''organs'' in that context. Otherwise, the process of families agreeing—or agreeing with exceptions—may be difficult for those families. That discussion is important.

To satisfy me, will the Minister make it absolutely clear—with no qualifications—that the distinction, reflected in the consent form, needs to be there in future and needs to be an explicit part of the discussion with families, which is covered in the codes of practice?

Dr. Gibson: Will the hon. Gentleman tell me why he thinks that people would care whether they were being asked about an organ, a piece of tissue, a cell, a piece of DNA, a protein or something else? If the sample is for medical research, and there is confidence and trust, is that not enough? We do not have to become inflexible.

Mr. Lansley: The short answer is no, it is not enough. Experience has shown that families take different views about the retention of different organs. People often feel differently about brains, hearts, and corneas—as the Minister said, that raises its own issues—compared with other organs or tissues. If we are designing a structure that reflects the wishes of families, as I hope we are, we must take into account their emotional responses and views. It is not, in practice, simply a question of whether one trusts the scientific and medical professions. One may do that, but still have valid emotional and instinctive reasons why one does not want to donate whole organs.

Ms Winterton: I am happy to give the hon. Gentleman some reassurance. There is an issue about what people understand tissues and organs to mean, which relates to what I was saying earlier. Tissue can be a whole arm, or part of a limb. Organs can be things that people would not necessarily think of and which do not necessarily fit in with the understanding of an organ as a brain, heart, liver or kidney. We would expect the HTA to make it clear in its codes of practice that we have to take into account public perception of what organs and tissue are, and to be sensitive about emotional responses. I return to the example that I gave. If someone said, ''We're going to take some tissue from the eye''—

The Chairman: Order. I appreciate that the Minister is seeking to be helpful, but interventions are becoming rather lengthy.

Mr. Lansley: I think that the Minister had helpfully said yes, and was explaining that. Her explanation will help families that are concerned that the practice of obtaining generic consent in the past may become the practice in the future. The fact that the definition of valid consent remains the common law definition has its uncertainties, but at the same time it means that the medical research community will be operating broadly within the legal framework that has developed over about 50 years. Just as we have to satisfy the medical research community about that, we can also say to families that the strengthening of enforcement means that valid consent, although not defined, will be guided

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by the codes of practice. That will make their position much stronger if there are flagrant breaches of what is understood to be valid consent. Such breaches will, in future, become breaches of the law by definition, because of the way in which the codes of practice are structured.

If the Minister is saying that the HTA will clearly have to reflect the distinctions, I do not want to press the amendment. I am grateful to the Committee for taking the time and trouble to explore the issue in detail. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Dr. Harris: I beg to move amendment No. 75, in

    clause 2, page 3, line 6, at end insert—

    '(2A) Where consent is given by a child under subsection (2), that consent shall represent ''appropriate consent'' in respect of the child upon reaching adulthood for the purposes of section 3 unless an indication is given to the contrary.'.

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

Amendment No. 149, in

    clause 2, page 3, line 15, at end insert—

    '(3A) Where consent is given by a person who has parental responsibility under subsection (3), that consent shall represent ''appropriate consent'' in respect of the child upon reaching adulthood for the purposes of section 3 unless an indication is given to the contrary.'.

10.15 am

Dr. Harris: These amendments deal with a relatively small point, which the Minister may be able to clarify in a relatively straightforward way. Clause 2 deals with the giving of consent for material to be taken from children's bodies.

On amendment No. 75, I question whether the consent of a child who is competent to give consent—a Gillick-competent child, in the vernacular—endures into the child's adulthood, unless otherwise revoked, and whether the clause is designed to deal with that.

Amendment No. 149 is probably a more relevant question. It deals with subsection (3), which concerns cases in which a child either is not competent to give consent, or is capable but has not done so, and consent has been given on the child's behalf. The question is twofold: will there be an obligation on researchers, for example, to return to the child to seek consent when that child reaches adulthood—where that is possible—or will the consent given on behalf of the child endure? Part of the problem is that the person who had parental responsibility when consent was given will no longer have parental responsibility at that later point. I seek reassurance that that will not be a problem.

What notification procedure should there be? That is an additional point, which is not really covered by the amendment, but which I hope will be dealt with in this debate. Will there be a requirement to notify people who come of age that material is being retained? Much of the Retained Organs Commission's work involves trying to identify people whose organs have been retained and whose tissue is being used, in order to notify them of that, so that they can withdraw their consent should they choose to do

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so—as is their right, where it is reasonable and feasible to do so. Will the Minister clarify that point?

If there is no obligation, or best practice, to contact an adult whose material was used when they were a child on the say-so of someone with parental responsibility, will the Minister clarify whether that person, who may have ethical views and opinions, has a right, upon reaching adulthood, to seek information about their tissue? Should they be able to ask for any stored identifiable tissue to be destroyed and no longer used in research? I am not sure whether I have a settled view as to whether that would be right. Will the Minister deal with those three issues in her response?

 
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