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Seeking Patients Consent: The Ethical Considerations, produced by the General Medical Council, describes how a young person can be treated as an adult and can be presumed to have capacity to decide at 16. My noble friend referred to that. Therefore, one must assume that Amendments Nos. 50 and 54 are intended to exploit the potential inability of young children under 16 years of age to provide informed consent. The same document provided by the GMC also states:
Where a child under 16 years old is not competent to give or withhold their informed consent, a person with parental responsibility may authorise investigations or treatments which are in the childs best interests.
On the basis of existing empirical evidence, how can the creation of an interspecies embryo necessarily be stated to be in the best interests of a non-consenting child? Let us not forget that the purpose of these amendments is restricted solely to research rather than to clinical treatments that have already proven their worth and might be used in the interests of the child. My noble friend Lord Patel stated in our debate on 3 December how producing satisfactory results was too high a hurdle. He made those comments on Amendments Nos. 7, 44 and 46. My amendment said that,
This amendment would allow human embryos to be made using gametes or cells from a child without their consent. How would the non-consenting child feel in later life once they realised that they were made a mother or father at an age too young to give consent, even if the embryo was destroyed by 14 days? Not many of us would want to know that our gametes had been taken, without our having any understanding of it, to make interspecies embryos or human embryos on our behalf and without our consent. No one has the right to take that decision on behalf of others. I feel that this is going too far.
There are echoes here also of an application made more than a decade ago by an Edinburgh scientist, Roger Gosden, who sought permission from the HFEA to use the eggs of aborted baby girls for fertility treatments. The HFEA did not demur. It embarked on a public consultation on whether a little girl would be aborted and then robbed of her eggs from her ovaries. A woman is at her most fertile at 20 weeks gestation, when she has 5 million eggs in her womb, 4 million of which are shed naturally before birth. An aborted girl could be seen as a rich source of organs and tissues.
The noble Baroness, Lady Knight of Collingtree, and I tabled an amendment in another place to a criminal justice Bill and successfully outlawed what I described as contemporary grave robbery. That a
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Obtaining gametes, especially from a girl, is not like giving blood. The procedure needs to be spelt out in full and any attendant risk, present or future, should be made clear to your Lordships while we debate the matter. I hope that the Minister, when he comes to reply, will tell the Committee very clearly how exactly one would get the gametes from these infants and children, especially how one would obtain eggs or ovarian tissue from a teenage girl of reproductive age. That should be described in ordinary, everyday language so all of us can understand what the procedure would be. Furthermore, would the procedure involve a general anaesthetic, and would that involve a risk? Would there be any risk to the girl during any of the surgical procedures? My noble friend said on Amendment No. 62:
I entirely agree with him. We need clarification on that point. The noble Lord, Lord Winston, will speak next, I think, and help to illuminate our proceedings. I want to know whether we can guarantee that there will be no possible risk of future damage to the childs own reproductive system.
On a related subject, I ask the Minister whether there is an error in new paragraph 9 in Schedule 3, in line 12 of page 63 and line 2 of page 64. Can he explain the relevance of donor with reference to child donor in that paragraph? Is that paragraph specifically related to the storage of gametes of children who may be ill or undergoing some medical procedure, such as chemotherapy, that may render them infertile, with the intention of storing their gametes to enable them to have their own genetic children later in life? That would seem perfectly reasonable. Is the purpose broader, to include donation as implied by child donor, and if so can these other purposes be explained? Is donor intended to mean patient, in which case could that be rectified, otherwise the meaning of the term could be considerably expanded in practice? If the word is intended to mean donor, does that mean that the child is intended to be an egg or sperm donor for somebody elses fertility treatment, or to provide eggs or sperm for research without their consent?
Finally, let me return to an issue raised earlier in our Committee. Why exactly do we need to do these things? We create embryos under any number of guises when alternatives exist. Yet, even if there were no alternatives, to create interspecies embryos from non-consenting children is going too far.
Only last week, Bob Edwards of Louise Brown fame commented at the end of the HFEA annual review about the need for welfare of the child to be the priority. In passing, he questioned the wisdom of the HFEA being involved in sanctioning the creation of hybrids.
Doubt was cast earlier on the figure I cited of 2 million human embryos destroyed or experimented on since the passage of the 1990 Act. A lesser figure of 82,955 was mentioned, but that is in connection with the number of embryos donated for research. The figures are in a parliamentary reply given to me on 28 June by the noble Lord, Lord Hunt of Kings Heath, at col. WA 159. The number of embryos created involving fresh, non-frozen embryos is 1,940,576, with just 3.4 per cent resulting in live births from a total of 66,715 treatment cycles. Since 1991, 76,462 embryos have been created in treatments involving frozen embryos, with 13 per cent resulting in live births from 10,040 treatment cycles. Therefore, more than 2 million embryos have been destroyed or experimented on since 1990.
If Amendments Nos. 50 and 54 were agreed to, would we collect data on the gametes and cells taken from non-consenting children or would that, too, become so routine that we would not feel the need to do it? I hope that the Committee will not incorporate these amendments into the Bill.
Lord Winston: I had not intended to speak in support of the amendment because it seemed self-evident that it was a valuable amendment that the Government should consider. I say, in all seriousness and absolutely sincerely, that it is extremely helpful that the noble Lord, Lord Alton, continues to make objections; it helps us to focus our minds on what is ethical and what is useful. I thank him for his points, but I disagree with him.
Pretty well all of us in this House who have at some time or other had unprotected intercourse will have made embryos that did not become babies; it seems that most human embryos do not. Let us not forget that most embryos do not implant.
I return to the points made by the noble Lord, Lord Patel. We must understand that genetic disease is a very serious issue indeed. There are about 6,000 single gene defectsthat is what we are talking aboutand most of them are so-called recessive defects, which means that if the parents both carry the gene, usually unwittingly, their children have a chance of having the defect. Such diseases are, frankly, untreatable. A few of thema handfuldo not cause very serious problems but, mostly, if you have a genetic disease, you live with it, you suffer from it and you die from it; and you die from it, normally, while you are still a child. Most
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The only effective treatment that we think is on the horizon for genetic disease is gene therapy. Basically, gene therapy involves getting the correct gene constructthe correct DNAinto the person so that their tissues start to express, or make, the proteins that are necessary for normal health. With cystic fibrosis, a protein is made without which breathing, digestion and other things would become impaired, and the children would die, usually in an emaciated state, with very severe breathlessness. One of my friends, sadly, is in that situation at the moment, and it is pretty unpleasant to watch her, as a young adultshe survived that long; she was lucky.
Gene therapy normally involves piggybacking a gene into the cell so that you can modify the genetics with which the person has been born. That is normally done with a virus; various viruses have been tried. In my own laboratory, we use what are called retroviruses for such experiments, and we do so only on animals. They are similar viruses to those that infect people during infection with HIV. You can see the potential risks that such therapy has.
Other viruses have been tried, particularly, for example, adenoviruses but, to date, gene therapy, in nearly all cases, has been an extremely serious undertaking. In America, there have been deaths after gene therapy and, so far, it has not been satisfactory. It currently carriesbecause we do not understand how to get the genes into the nucleusa risk of cancer, a risk of an immune reaction and, in some cases, a risk of death within a few days of treatment. There is a real needlet us not underestimate thisto get genes into tissues that are damaged. At present, most gene therapy, quite understandably and probably quite ethically properly, is reserved only for people who are already so seriously sick that there is no alternativeby which time, in the case of cystic fibrosis, their organs are really badly damaged; they can hardly breathe and are virtually at lifes end. If we could get the genes in earlier, we could prevent both that scarring and that terminal disease. Therefore, the need to try to treat children youngearly on, while the disease is still making its way and not with its full ravagesis extremely important.
With all due respect to the noble Lord, Lord Alton, there are many examples in medicine where parents or guardians quite properly take it upon themselves to make consent for medical research on children that involves the potential to improve the health of their children or of others. That is firmly established within paediatrics, and while that area is at the moment under considerable scrutiny there is no doubt that that aspect of paediatric research is considered completely proper. There is no question among most medical opinionand, I suspect, most public opinionthat it is appropriate to do that.
Consent given by someone legally entitled to do so on behalf of the child must be an appropriate way to conduct such research, particularly where there seems to be a real therapeutic possibility. The great advantage
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We can never prevent genetic disease. Each of us in this Chambereach of your Lordshipshas a defective gene somewhere in our genome. In most cases, however, your Lordships are fortunate not to have married or have had sex with someone who has a similar defect in their genome and, therefore, your children are not at risk. That is a matter of random chance, and, if we can prevent these diseases or improve our understanding of them, it is a moral imperative to do so.
Lord Patten: I fully support the noble Lord, Lord Alton of Liverpool, and will not attempt to repeat the arguments that he so clearly gave. I also feel that the noble Lord has isolated a continuing problem that has begun to run through our Committee debates. That problem is definition; in this case, definition of the word donor.
We had some discussion last week about what donor meant, as it seems to be being used interchangeably. Sometimes it can mean a patient and at other times someone who is willing. Sometimes it does not mean giving consent in the way that some of us would understand consent to be given. I hope that we will have a clear definition on Report from the noble Lord, Lord Darzi, on what he and the Government actually mean when using the word in this Bill. I take this as my closing text: we should not legislate on those things which we cannot define.
The Lord Bishop of St Albans: I am neither a medic nor a lawyer, but if I picture a child involved in such processes, I have this question. Clearly, I do not know the answer, but will be grateful to hear from someone who does. Let us imagine that a child has had these procedures carried out on them. What rights in law would that child no longer have after the procedures, which they would have had had the procedures not been carried out? I am looking around the Chamber in the hope that, at some stage, someone can give me an answer.
Lord Winston: On a brief point of information, the amendment is not suggesting that we take eggs or spermor cells that might produce themfrom a child, but simple cells. For example, a cell from a buccal smear from inside the mouth might do perfectly well for the purposes of the proposal of the noble Lord, Lord Patel. We are not suggesting operating on little girls to remove their eggs from their ovariesthat is not at stake. We are not looking at a major invasion of a childs body.
Baroness Carnegy of Lour: I have not joined in the proceedings before. I missed Second Reading but I have listened to the whole of the Committee stage so far. The main part of the argument of the noble Lord, Lord Alton, was that he wondered what a child would think when it grew a little older and was told by its
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I am sorry that the churchpart of the church, anywayis being so depressing about the possibilities before us. As a church person myself I find it sad. I appreciate what the noble Lord is doinghe does it beautifully and with huge integrity, and I admire him for itbut I am sad about it and it is the church that is doing this. I am not talking about all the other issues because I am not sure that I fully understand them all, but on his point about what the child would think when told by its parent that it had helped in this way, I think he is wrong.
Lord Alton of Liverpool: I am grateful to the noble Baroness for raising that issue. First, I do not speak for the church or indeed put forward views held by the church. The church is quite capable of doing that on its own behalf. I put forward my own views. I have argued for probably 40 years for the sanctity of human life from the womb to the tomb and I will go on arguing that proposition. I am extremely grateful to the noble Baroness for the way in which she couched her remarks.
I spoke to these amendments because I want to shed light on whether gametes or cells are involved. The noble Lord will no doubt give us further illumination when he comes to describe what is actually in the amendments and what dangers there might be for the young woman from whom these gametes might be taken. That seems a perfectly proper question to ask in the context of this issue and to raise again the issue of consent and what precisely is meant by donor. The noble Lord, Lord Patten, is right to ask about that; the point was raised in our debate last week about so-called saviour siblings and will be raised in other contexts as the Bill proceeds.
All of us need to think very carefully about what we do on behalf of others, even when parents give consent. I agree with the noble Lord, Lord Winston. I was in the position 18 years ago when my own daughter had a congenital hip displacement, of having to give consent for general anaesthetics and for operations to be carried out, which were very painful and difficult. I am glad to say that, thanks to the skills of the doctors involved, my daughter came through that experience and her problems were rectified. These are decisions that parents have to make, but we as parents have to know what information can inform our decisions. If there are dangers to our daughters or sons as a result of any of these procedures being carried out, we have a right to know that before we incorporate such proposals into law.
Lord Elton: The noble Lord, Lord Winston, offered some reassuring words to the right reverend Prelate about how these powers would be used if they were
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Baroness Royall of Blaisdon: This has been another fascinating debate. Amendments Nos. 50 and 54, tabled by the noble Lord, Lord Patel, seek to permit the use of gametes or cells for creation of human and interspecies embryos for research from a child not able to give consent. Consent instead would be obtained from the parents of the child. This proposes that such cells or gametes could be used if there were reasonable grounds for believing that the research would be less effective if taken from a person who could consent, such as an adult with capacity. Consent to the use of sperm and eggs in the creation of embryos and to the keeping and use of those embryos for treatment or research is one of the cornerstones of the 1990 Act. The provisions relating to when consent will be required and the form of such consent are set out in Schedule 3 to the 1990 Act.
The Bill allows the use of gametes and cells to create human and interspecies embryos for research only where the adult who provided the cells or gametes gives consent. This reflects the special status of an embryo created using a persons genetic material. No one can give consent on behalf of an adult who lacks capacity, and for the same reasons I do not believe that a childs cells or gametes should be used to create embryos or interspecies embryos without that childs own consent.
I listened with interest to the views expressed by the noble Baroness, Lady Carnegy of Lour. I listened carefully to the noble Lord, Lord Patel, and my noble friend Lord Winston, and better understand the benefits which such an amendment could bring. However, if a child is incapable of giving consent to the creation of a human or interspecies embryo themselves, then it would be wrong for any person, including the parents, to make that decision for them.
The noble Lord, Lord Alton, asked whether there was an error in Schedule 3 and about the meaning of donor in that context. New paragraph 9 refers to child donor and has a meaning specific to this paragraph. Where a child is about to undergo treatment that will affect their fertility and cannot consent to storage of their gametes, this paragraph allows storage only for their treatment if it is in their best interests. Gametes cannot be used for any other purpose.
The right reverend Prelate the Bishop of St Albans asked what rights the child would lose. Under the Bill, consent is required to create an embryo. A child able to give consent could do so; otherwise, no one may give consent on the childs behalf. Amendment No. 50 would provide an alternative mechanism.
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