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At least from the implantation of a fertilised embryo we are a unique character for others, for society, for our maturing, enjoyment and fulfilment, and for God. We grow into the fullness of that unique character in the context of our parents, which is relevant to some of the later clauses in the Bill about fathers, and then under an ever-widening range of influences throughout our lives and, I should say, beyond. It is an archetypal human right that we are that unique character for those purposes. It is our responsibility first as parents to defend that right around our children and for them, then it is society’s responsibility to do so and society, in this context, includes Parliament and the medical professions. If that picture of what it is to be human and of humankind’s responsibility for human individuals is valid, the picture of saviour siblings as imagined in the aspects of the Bill that the noble Lord, Lord Alton, is seeking to remove, or to amend if removal fails, is fundamentally at odds with the picture I have painted.
Enabling the collusion of parents—whom I have suggested have major responsibilities to defend and succour the growth of the infant into maturity—in making this individual an instrument, making legal
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Baroness Hollis of Heigham: Before the right reverend Prelate sits down, can he help me? I am now confused between the concept of instrumentality on the one hand and the issue of consent on the other. I gather from the right reverend Prelate that he is opposed to a second child being conceived through IVF in such a way through screening that that second infant is known to be compatible and therefore in a position to donate an organ or whatever. The right relevant Prelate has said that however much loved the child may be by its parent and however much that parent might have wanted a second child in any case, none the less, turning that child instrumentally into a means to an end is somehow degrading to human dignity.
There is a second issue of consent. What would be the right reverend Prelate’s advice to us were that first child to become ill after that second child was born and it so happened that there was a fortuitous tissue match and that that first child would survive only if the one year-old’s or the two year-old's kidney was removed without that small child being able to give consent to save the life of the first? Does the right reverend Prelate think that both those circumstances are identical? Does he think there is less instrumentality about the second because it is about chance?
The Lord Bishop of Winchester: The noble Baroness's second example is where the noble Lord’s later amendments come into play. It is entirely one thing for somebody as an adult and in a position to choose to offer some part of themselves for a sibling or a close relative, but quite another for an organ to be removed from a two year-old, which was the example she mentioned, for that purpose. A two year-old clearly is not in a position to give consent or to judge the risks involved. That would be the same whether or not there had been the intention to create this child so that it could do that.
I have already spoken about the intention to create and I have said that I am not convinced by the turning upside down by the noble and right reverend Lord, Lord Harries, of the argument of the noble Lord, Lord Alton, and, by implication, of my argument. The noble Baroness’s second point runs straight into the later set of amendments which would make such removal of organs from a child for another’s good a criminal offence.
Baroness Deech: No other field has been as extensively analysed by the lawyers as well as by the ethicists. The noble and learned Law Lords of this House gave a
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The Law Lords gave judgment in the case of Hashmi and found that the procedure was legal and, I believe, ethical. The trouble lies in the Human Tissue Act. It has been said in many quarters that it is a pity that amendments are not being made to the Human Tissue Act on this occasion. Until very recently there would have been no question of a donation from a child who did not have the capacity to consent unless that child was made a ward of court. The judges would consider the case and most likely not give their permission. The fault lies, if there is one, in this new law that the HTA should be giving permission in these cases.
The Law Lords regarded it as legal for umbilical cord blood to be used, although in fact the Hashmis never succeeded in becoming pregnant. The lady in the case did have a child naturally, but that child was not a matching sibling. There is only a one in 16 chance of finding an embryo that is free of the disease and is capable of developing into a saviour sibling. In other words, the law is very narrow indeed. The fault lies, if I have it right, in the removal of the wardship jurisdiction which would protect a child who did not have the capacity of consenting to have an organ taken.
As to “means to an end”, I am sure that Members of the Committee will agree that no one should be used as a means to an end, but until the dawn of the age of contraception very recently there could be no question as to whether there was a good or a bad reason to have a child. People had babies because they came along, maybe to till the land, to inherit a title indeed, or for whatever reason, and there is no question but that parents are likely to love that saviour sibling very much indeed because they have gone to enormous lengths to have it. The Law Lords have been on the side of this procedure. The fault lies in the way that permission might be given in relation to any tissue other than the umbilical cord.
Lord Alton of Liverpool: Before my noble friend sits down, perhaps I may ask her a question because of her knowledge in this area. She is quite right. Without the ability to amend the human tissue regulations, which was of course originally part of the purpose of this Bill when it was first presented, we are not able to lay a statutory duty in the context of things like the routine collection of cord blood. Rather more importantly, and on the point she has just made, will she clarify what are the best interest regulations inside the Human Tissue Authority’s code of practice and confirm that they extend way beyond the medical questions to psychological, social and emotional issues? If we incorporate those into these tests that will obviously be a wide area indeed on which to make these judgments.
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Baroness Deech: I am sorry to say that I am not as familiar as I clearly should be with the definition there, but there are legal definitions of “best interests”. In my view, looking back at decisions made in the past, it is very unlikely that a court would give permission for a major organ to be removed from a small child. At least that was the case in the past; the Human Tissue Act is new.
In the discussion of a person being born as a means to an end or treating anyone as a means to an end, the most egregious example of that was the Diane Blood case where sperm was taken from a dying and then a dead man. There are provisions in this Bill which would continue to prevent any such thing, but that is the area to be careful of.
Baroness Tonge: I rise to speak to Amendment No. 35A in the name of my noble friend Lady Barker. I wish I had done this earlier in the debate but I could not somehow get in. Before I do so, I should like to make some brief comments on the debate as it has evolved so far.
To complain that “serious” should not replace “life threatening” is quibbling because surely a serious condition is one which could become life threatening if not treated. Therefore, it would be better to treat it when it is serious rather than life threatening. I really do not understand that amendment. I take a similar view on the amendment about effective treatment. Who knows whether a treatment is going to be effective before it takes place? You hope that the patient will be treated effectively, but you cannot guarantee it.
6.30 pm
None of us seems to have any qualms about the use of cord blood from saviour siblings—as we may call them. Having done many bone marrow punctures in my junior doctoring days, I do not have any qualms about bone marrow being used either, but I support the noble Earl, Lord Howe, and the noble Lord, Lord Alton, in their amendment to the phrase “other tissue”. That phrase is very worrying. The Minister needs to explain that. We have heard that it could be interpreted to mean that the organ—a kidney, say—of the saviour sibling could be removed. We have been assured by the noble Baroness, Lady Deech, that that could not occur under the Human Tissue Act. I suggest, moreover, that it could not occur because the mother who, once the baby is born, bonds with it, whatever was the reason for its birth, and loves her children equally, would have great difficulty in going one step further to save the first child.
Baroness Deech: May I make a small correction? I am not sure what would be the procedure under the Human Tissue Act. I do not believe that it is right for the Human Tissue Authority to be giving that permission. It would be better if we had the old system, whereby a child was made a ward of court and the judges gave permission. I do not know how the Human Tissue Authority would approach that.
Baroness Tonge: I thank the noble Baroness for that intervention. It is something that all of us on all sides of the argument in these debates are clearly extremely concerned about, and it needs to be clarified by the Minister in her summing up.
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- “in a case where a person (the parent) who is one of the persons whose gametes are to be used to bring about the creation of an embryo suffers from a life threatening condition which could be treated by umbilical cord blood stem cells of any resulting child, establishing whether the tissue of any resulting child would be compatible with that of the person”.
In other words, this is a probing amendment to see whether it would be possible—whether the Committee thinks that it would be feasible—for cord blood stem cells to be used to save the life of the parent, perhaps, should they be compatible with the saviour sibling. We need to consider that. If we are doing it for children, why not do it also for the carer of those children?
As I said, it is a probing amendment. We need to hear the Minister's response to see whether the Government will consider it. I look forward to her comments.
Lord Walton of Detchant: I do not intend to make a lengthy speech on this very difficult issue, which bristles with scientific, medical, ethical and social problems, not all of them easy of solution. Speaking entirely personally, I have a great deal of sympathy with the view expressed by the noble Earl, Lord Howe. The idea of creating a so-called saviour sibling to produce an individual who could then be used as a source of human organs—such as a liver or kidneys—fills me with considerable concern.
Having said that, speaking now as an honorary fellow of the Royal College of Paediatrics and Child Health, I am fully aware that a number of serious, life-threatening disorders—I prefer the term “life-threatening” to “serious”, because it is crucial that something of this nature could be used only for the amelioration of conditions that are life threatening— which are genetically determined and occur in infants, are progressive and utterly devastating in their effects. One such is the X-linked disorder called adrenoleucodystrophy, which produces progressive paralysis, fits and a whole lot of other things in young infants. There is evidence to suggest that if that disease exists in a family and is diagnosed early, it is possible—in that condition and in some of the other metabolic and storage disorders of young infants, if we could obtain immunologically compatible bone marrow and transplant it—significantly to ameliorate the condition. In certain instances, there are other conditions in which that could produce a cure.
For that reason, I certainly agree with the noble Earl, Lord Howe, that bone marrow must remain covered by the clause. I entirely understand why he wants to remove the words “other tissue”, but let me postulate something for the future. My personal interest is in research into muscle disease. A number of genetically determined muscular dystrophies exist that are the rare congenital dystrophies present from birth which are the result of abnormal genes. Muscle is a regenerative tissue; it has an enormous ability to regenerate. It is perhaps theoretically possible that one could remove with a needle a small amount of muscle from an individual, culture it and derive from it stem cells that could be used in treatment of the human disease. I am talking purely hypothetically, but I think that to have the term “other tissue” ruled out completely might in
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I agree with the noble Earl and with my noble friend Lord Alton about the concern expressed around the Committee about the creation of a sibling as a source for organ donation.
Lord Elton: I first echo support for my noble friend on the Front Bench and for the noble Lord, Lord Alton, in what he is trying to achieve. Secondly, we will clearly have amendments tabled to the Human Tissue Act at Report—
Baroness O'Cathain: We cannot.
Lord Elton: We cannot? In that case, I withdraw that sentence.
The principal concern is the legislation to allow tests of an embryo to take place before implantation to discover whether it will be compatible with a sibling or other person. The noble and right reverend Lord, Lord Harries, said that there would be mixed motives in the generation of such a child and that we should remember the emotions of a mother—the parents—who might want a child whether or not it was compatible.
If the child was compatible and the emotions— the motives—were mixed, the embryo would be implanted and might go to full term. If it was not compatible, the question then arises: what would happen to the embryo? If the mother and father wanted a child anyway, the child would again be implanted and would hopefully go to full term. What is exercising us, as much as the question of the use of a child as something from which to harvest organs—which is a repulsive idea—is the idea that if the child was not compatible, the embryo would be destroyed.
There are three courses, are there not? There is the compatible child, when all that is wanted is a compatible child, which goes to full term; there is the incompatible child that is not wanted for other purposes, which is destroyed; and there is the one for which there are two motives for generation, which also goes to full term. I merely wanted to draw to the Committee's attention the fact that the purpose of the part of the Bill that the noble Lord, Lord Alton, wants to remove is in part to identify embryos for destruction.
Lord Winston: Very briefly, I wonder whether I might, without causing too many jitters on my Front Bench, throw a tiny embryological spanner into the works. Perhaps the noble Baroness, Lady Deech, will correct me if I am wrong, but so far, in practice, most of these diagnostic procedures, which are very rare—they have been done only a very few times—have usually been done in collaboration with other countries, for example in the United States where tissue-typing or a gene-specific diagnosis has been made by a pre-implantation diagnosis overseas. How would that be covered by British law under the Bill if it was passed? Should that be considered, because it seems to be quite relevant to our discussions?
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Baroness Deech: As I have said before, we live in a world of freedom of mobility. There is nothing to stop anyone going abroad to have a procedure that is limited or prohibited here. Indeed, the HFEA refused the Whitakers permission to have such a procedure. I understand that they had the procedure in the United States and it was successful. We have no control in that sense, but we live in a world of globalisation so far as IVF and embryology go, as the noble Lord, Lord Winston, knows only too well. All we can do is to set standards in this country and do what we can to counsel people. If we get the law right, we can rely on the judges to uphold and protect it, but only of course within the boundaries of this country.
Lord Jenkin of Roding: In the light of the debate, I have reread a bit of the Joint Committee’s report and the evidence on which we made our recommendation that we should substitute “serious” illness for “life-threatening” illness. The argument has been that “life-threatening” was very restrictive and that you could have an elder child—no doubt the noble Lord, Lord Walton, could give us many examples of this—who was bound to live an extremely restricted life as the result of disease but who would not actually die prematurely. We came to the conclusion that it really would be unduly restrictive to refuse permission for a saviour sibling to be used in those circumstances. We based this on the evidence of two distinguished academics, Professor Sheldon and Professor Wilkinson. If anyone wants to read it, it is in their memorandum at pages 454 and 455 of the evidence. Even in the light of this discussion, I would draw the same conclusion reached by the Joint Committee.
The report says, however, that,
- “we do not understand why the practice is limited to ‘life-threatening’ conditions capable of treatment using umbilical cord blood stem cells”.
Our evidence was that the phrase,
was intended to be restrictive and to create a limitation, so that you could not have a saviour sibling for the purpose of harvesting a kidney or anything else.
I listened to my noble friend Lord Howe speaking to the amendment in his name and that of the noble Lord, Lord Alton, and I do not think for one moment that the Joint Committee would have contemplated a saviour sibling being used for that purpose. I yield to the noble Lord, Lord Alton, who referred to the recommendation, but I do not think that that is what we meant or that I would have agreed to that if it were. I like the idea of regenerative tissue. Bone marrow is a very good case in point. Of course it is regenerative, and there may well be others, but that is what it should be limited to, and I very much hope that we may come back to this on Report and put it into the Bill. I wish to retain “serious” illness and not restrict this to “life-threatening” illness.
I have one other thought. There is a huge difference between the conduct of a joint pre-legislative committee, which we had, and the importance of a debate such as the one that we have had this afternoon. Both serve their purpose, but the pre-legislative committee can never be a substitute for debate in the House.
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6.45 pm
Lord Alton of Liverpool: I am very grateful to the noble Lord, Lord Jenkin of Roding, for his interpretation of and personal feelings about this. I suspect that he will have seen the interview with Mr Phil Willis, the Chairman of the Joint Committee, and heard the quotation about autism which I cited from it. I am certain that that does not reflect his view, but he will see how, given that interview and its publication, there could certainly be concerns that “serious” can be interpreted very differently from the example that he has just given.
Lord Jenkin of Roding: I expressed at Second Reading my admiration for the way in which Phil Willis chaired our committee, but I do not agree with everything that he said, which he recognises. No one could be happier than me if the position could be resolved by an amendment to the Human Tissue Act, because, as I explained in my Second Reading speech, I am advised by the House authorities that it is outwith the scope of the Bill and so cannot be done.
Lord Winston: I, too, was a member of the scrutiny committee, and I was always unhappy about this definition and the difference between “serious” and “life-threatening”. I take a different view from that of the noble Lord, Lord Jenkin. The definition of a life-threatening disorder can be extremely wide. We face in this country the possible threat of a bird flu epidemic that might kill people. Influenza is a life-threatening disease that has killed many thousands of people in the United Kingdom in the past century. The definition of “life-threatening” is very broad and in many ways is preferable to “serious”, which is open to all sorts of interpretations and is much looser. “Life-threatening” is a better definition and would cover genetic diseases.
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