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The hon. Member for Enfield, Southgate persisted in suggesting that the Bill did not explicitly rule out the donation of organs. He did try to correct himself, but he continued to make that assertion, although it is not the case. The Bill sets out that the siblings must be suffering from a serious medical condition that could
be treated by umbilical cord blood stem cells, bone marrow or other tissue, except whole organs, resulting from the child
Dawn Primarolo: The hon. Gentleman has intervened a lot and he has also spoken. If I could make some progress in answering the points that he has already made, I would be happy to give way later. He owes the Committee an explanation of whether his motivation is just that he is completely against this Bill and its provisions. That would be a legitimate position, but it would be helpful if he could make that clear.
Amendment No. 18 would limit to regenerative tissue the cases in which embryo testing can be used where the intention is to use tissue other than bone marrow or cord blood. It is our view that that might prevent the use of some potentially desirable types of tissue in the future, such as cells of the umbilical cord itself.
Amendments Nos. 15, 16 and 17 address the issue of whether a disease is life-threatening. Embryo testing allows families with inherited genetic conditions to avoid passing on the particular condition that affects them. The HFEA has licensed more than 80 conditions for pre-implantation genetic diagnosis, including Huntingtons disease, muscular dystrophy and cystic fibrosis. Three of the purposes for which an embryo can be tested relate specifically to medical conditions, and the Bill specifies that embryo testing for those three purposes can be done only when the condition is serious.
I accept the points made in the debate that the Bill does not contain a definition of serious. The HFEA will have to determine how that term should be used in practice when considering the appropriateness of embryo testing for any particular condition. We expect its ethics committee, using its full experience as an authority, to make appropriate interpretations.
severely impairs...quality of life.
The effect will be to tighten the criteria for which some types of embryo testing can be carried out. As I have said, embryo testing is not a trivial process. It involves invasive stages of IVF including the drug regime and egg collection, plus an additional stage of testing, which will ultimately reduce the numbers that are suitable to be placed in the woman. People would not and do not undertake the process lightly or for trivial conditions.
How much effect the amendments would have on practice would depend on how the criteria are applied. The HFEA would still need to consider what makes a condition life-threatening: whether such a condition is one that shortens the life of the affected person by a number of years, or one that causes death in childhood. How much of an impairment must the condition be to the persons quality of life? Those are difficult decisions. The use of the word serious in the Bill is to determine for which conditions embryo testing is appropriate. It gives a strong steer about what kinds of
conditions can be tested, while allowing scope for the HFEA to apply definitions using its licensing experience.
Amendments Nos. 24 to 30, tabled by the hon. Member for Oxford, West and Abingdon (Dr. Harris), relate to the use of the word abnormality in embryo-testing provisions. He seeks both an alternative description and an extension of the provisions. Under the amendments, the embryo-testing provisions would be extended to allow the testing of combinations of genes, as well as genes that are not necessarily harmful on their own but could be in combination with another factor. That would involve testing for genes that in the majority of the population are normal variants and would not necessarily cause a medical condition.
The amendments go further than the provisions in the Bill, and the Government have concerns that as currently drafted the effect might not be as intended. The Bill reflects current HFEA policy, and we are not aware of anyone having used the technology for the wider uses envisaged by the amendments to date. For some people, that type of testing would be considered a step too far. However, we recognise the desire for future-proofing of the legislation. Accordingly, we have allowed for that via a secondary power enabling the provisions relating to embryo testing to be amended in the future. Such regulations would be subject to the affirmative procedure. The amendments are not appropriate as they would allow testing for conditions that to date the HFEA has not licensed. If necessary in future, the legislation could be amended using the regulation-making power.
Amendments Nos. 19 and 20 seek to remove the regulation-making power so that the provisions in the Bill when enacted could not be updated if necessarya point to which Members keep referring. To ensure that the desirable purposes of testing can be permitted, and the undesirable ones prohibited, the regulation-making power is appropriate. The amendments would not allow the legislation to keep pace with science and would limit the longevity of the new Act.
Let me deal with amendments Nos. 14, 31 and 32, on licences for therapy. Under the 1990 Act, the HFEA is given the power to issue licences in respect of four types of activities: treatment, non-medical fertility services, storage and research. The Bill does not change that. The amendments tabled by the hon. Members for South Cambridgeshire (Mr. Lansley) and for Oxford, West and Abingdon would add the further specific category of the licensing of the creation and use of embryos for therapythat is, the creation of embryos to generate embryonic stem cells for use in the treatment of disease that is not infertility related.
The Government have always supported the use of embryonic stem cells in the development of treatments for serious diseases and medical conditions. Following discussion in the House of Lords, we gave the need to license non-reproductive therapies serious consideration. The Government are of the view that the licensing framework that would be in place following the introduction of the Bill would allow for the derivation of embryonic stem cells if it took place as part of a research project.
In the vast majority of cases, it is highly likely that clinical research would be involved. The Bill would then allow the development of those cells into a therapeutic product without the need for further amendment.
Any embryonic stem-cell line that is intended for therapeutic use will need to undergo considerable safety assessment and then a substantial research phase involving pre-clinical and clinical studies. Each and every cell produced with the intention of treating disease would be different, and therefore each and every cell line produced would require the same clinical research, including pre-clinical and clinical studies. It is therefore unlikely that stem cells will be taken directly from an embryo and inserted into the patient.
Even with the most advanced and effective protocols for stem cells and for the differentiation of those stem cells into the tissue required, the pre-clinical and clinical testing of those cells will invariably be required before wider use can be sanctioned. As we have explained in detail and in a letter circulated to the House of Lords, it is therefore difficult to envisage a situation, despite the propositions that we have heard, where stem cells will be used for patients without some element of research involving pre-clinical and clinical studies. That would be the appropriate time to consider what further regulatory framework we need.
Some hon. Members are concerned that if embryonic stem cells are derived under a research licence they cannot be used in treatment, because that goes beyond research. Let me address those concerns. Regulatory oversight by the HFEA finishes once a stem-cell line is derived. That means that once embryonic stem-cell lines have been developed, the HFEA regulatory framework under which the embryo was produced is not relevant to any further use of that cell line, whether for further research or for treatment.
The Medical Research Council has recently made available £3 million in order to allow the consideration of 25 embryonic stem-cell lines for therapeutic application, which is to be awarded to research projects in that area. That reflects recognition of the potential for the creation of embryonic stem cells for use in therapy. The House should consider what it does next when that potential is closer to realisation.
Mr. Grieve: I had not intended to intervene in the debate, but the comments made by the Minister and the right hon. Member for Knowsley, North and Sefton, East (Mr. Howarth) cannot go unchallenged. I fully accept that the Committee has to consider some complex ethical issues. One of the underlying ethical issues, which the Minister touched on, is the extent to which one approves or disapproves of interfering in the process of procreation. That is one of the fundamental dividing lines between Members of the House; it has been illustrated in earlier Divisions and will doubtless crop up again.
On Second Reading, I took the view that I should not oppose the Bill, because whatever my ethical viewpoint on that fundamental matter, it could be argued that the pass was sold in that regard rather a long time agocertainly some time before the Government took office.
However, the problem that the Minister seemed quite unwilling to address this evening was that once the pass has been sold, and the House and the Government have taken over the task of making those ethical judgments, they cannot be ducked. The right hon. Member for Knowsley, North and Sefton, East said that the provision was not about designer childrenan argument echoed by the Minister. I have to say that their argument has an intellectual incoherence that is truly breathtaking. It cannot be argued that the provision is not about designer children, because the intention behind it is to design children who will fulfil the particular purpose of being able to help their siblings. If the House is really to be soft-soaped into believing that is not the case, it really is to the discredit of the Government in their inability to engage in coherent argument.
There might be powerful reasons for the Minister to say that the provision represents an aspect of designing children that the Government conclude is justified. That argument would be intellectually valid, but it is to belittle any notion of common sense to argue to the contrary.
Mr. George Howarth: The example I gave from schedule 2I think, with some intellectual credibilitydemonstrates that if we cannot design the gender of the child, it cannot possibly be in all respects a designer child. There is a world of difference between what the hon. and learned Gentleman is talking about and what is in the Bill and, if I may say so, the lack of intellectual credibility lies elsewhere than with my right hon. Friend the Minister and me.
Mr. Grieve: I listened carefully to the right hon. Gentleman, but I have to disagree with him. I accept that he might be using the expression designer child in a sense that I am not, but if one decides to select the creation of a child on the basis that it has certain design characteristics, particularly in terms of its genes, which will be helpful to a sibling, to my mind that is a designer child. We really cannot escape that argument.
Patrick Hall: Is the hon. and learned Gentleman not treading into the area of saying that IVF is design? The tests made in that technique are normally to try to ensure that the child, or potential child, does not suffer from certain genetic conditions.
Mr. Grieve: The hon. Gentleman makes a perfectly valid pointone could indeed advance that argument. On the whole, in vitro fertilisation to aid conception has been accepted by many as valid, particularly if it is carried out, in essence, randomly. However, if it was carried out selectively the hon. Gentleman would be right.
I want to move on. I was making a preliminary point, because as the debate moves awayas I hope I now willfrom the fundamental potential ethical divide over interference in a natural process, what troubles me is that the House may be lulled by arguments that what we are doing is not very important or does not matter. It is important that we are not lulled into a situation where the Minister says, All these things will add to freedom of choice, which was one of the arguments. That may be so, but the provisions will be subject to the HFEA, which was set
up as the arbiter of that choice. That is not pure freedom of choice at all. We are not saying, We leave it to everybody to make up their mind according to their conscience. Instead, we are setting up a whole series of processes. The Minister says that the processes will be limited, but what do some of those serving on the HFEA say? An external adviser, Dr. Simon Fishel, predicted that saviour siblings would soon be used to treat children with various forms of anaemia, and could eventually help those with other conditions. He said:
You might start looking at organs...Suppose you have a family with a gene for polycystic kidney disease.
If they are going to have another child they could use these techniques not only to ensure that it does not suffer from the condition, but also use tissue typing just in case an older sibling does need a transplant later.
There has been a lot of debate about the impact that the decision to bring a saviour sibling into the world will have on the saviour sibling, and whether it will depend on whether he fulfils the expectations of his parents. Those are valid points, but the question that we must ask, having balanced what we aim to achieve against the possible disbenefits, is whether it is necessary to proceed down that route. To argue that we are not engaging in design is a piece of casuistry that does not help us in our deliberations, because whether we are doing it for good or ill, that is what we are doing.
Robert Key: My hon. and learned Friend is making a characteristically erudite and clever speech, but he disappoints me, because he seems to be trying to argue that someone is literally designing a child. That is not the case. We are talking about discovering something that already exists, and simply choosing one kind of cellular structure rather than another, one of which will deliver genetic abnormality or disability, and one of which will not. That is not designing a child. That is taking what is on offer in nature, and it is helping to design only in the sense of choosing what is best.
Mr. Grieve: I have to say that I disagree with my hon. Friend. It is a selection of a design for a purpose. Moreover, I do not know whether he was present at the time, but the Minister made it quite clear that we are using the expression saviour sibling because the design intention is to help the sibling. Indeed, that is the purpose of the Bill. The aim is not to remove the possibility of a child having genetic problems of their own, but specifically to help another child. I am trying to confine myself to the narrow issue, rather than stray on to the wider ethical question, but I find the proposition very dubious indeed.
The House has taken it upon itself to try to regulate these challenging ethical fieldsthrough, I suppose,
the mechanism of the HFEA; it is the arbiter. I find that impossible to justify, even if I try to approach it in the manner in which it has been presented by the Minister. For that reason, I shall certainly support the amendments of my hon. Friend the Member for Enfield, Southgate (Mr. Burrowes). I do not see the need for the process, to approach the issue from the narrow angle of the Minister, and I see many downsides to it. We are embarking on a new field of ethical activitythe creation of human beings specifically for the genetic benefit of others. I suggest to the House that it should try to think through logically the consequences of what it is doing before we embark on that course.
Mr. George Howarth: The hon. and learned Gentlemans argument is predicated on the assumption that a child born in such circumstances would be created for one purpose only, which is clearly not the case. I do not know whether he is aware of what was in his parents minds when he was conceived; I certainly do not know what was in my parents minds. I remain grateful for the fact that I was born[Hon. Members: So are we!]but I am unlikely to ask my mother, as she enters her 82nd year, what was in her mind at the time.
Mr. Grieve: I have no idea what was in my parents minds at the time, although I can speculate, but I am sure that it was not a tissue-type match for a sibling, which is the serious point that the Committee must consider. Underlying the regulation of those processes, which have been going on since 1990, is the notion that there are some underlying ethical matters, which have continued to trouble hon. Members and the Government. Moving to a situation in which people are created as tissue matches, which is the only reason the HFEA must regulate such activity, strikes me as an astonishing change for which I have not heard a single justification.
I want to bring my remarks to a close. If the Minister wants to justify the provision to the Committee, she will have to do better than arguing that it is not a design process for the purpose of helping somebody else, which means that it is of no relevance to the person being procreated. Even on that narrow basis, there are strong arguments not to go down this road.
Tom Levitt: I rise as a biologist, a rationalist and a supporter of the Bill. I am not attracted by any of the amendments that have been discussed tonight. However, I do not want to engage in intellectual argument or discuss high-falutin matters of philosophywe heard enough of that in the previous contribution.
I want to tell the Committee a story about one of my constituents. David is three years old and suffers from
fanconi anaemia. There is no medical treatment or cure for that condition. He needs a bone marrow transplant before the age of 10 to avoid a slow and lingering death within the following 20 years, when he will die from bone marrow failure or from leukaemia. There is no existing tissue match for David. All 12 million people worldwide who are members of bone marrow databases have been checked, but a match has not been found. If David were to have a bone marrow transplant from a mismatched donor, there would be a 30 per cent. chance that he would survive in the short term. At that point, he would spend six months of his life in hospital, and he would have a life expectancy of perhaps another 15 years. He would not reach adulthood, if he were to have a mismatched donor.
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