My Lords, I shall speak also to Amendments Nos. 51, 62 and 113.
Schedule 2 to the Bill amends Schedule 2 to the 1990 Act, which lists what a licence may authorise in the course of providing treatment services. The Bill introduces an additional purpose for which embryos can be used under a treatment licence, which is in the training of embryologists. The Bill specifies that this use in training is limited to techniques associated with the testing of embryos, such as embryo biopsy. In practice, it is unlikely that a large number of embryos will be used for training, because only those embryos which are not suitable for treatment or storage will be used for that purpose. However, it is important that where people are willing to donate to the training of embryologists embryos which they do not require for their own treatment, they should be able to do so.
During debate on the Bill, comments have been made about other embryological techniques in which embryologists might wish to use human embryos to practise; vitrification, for example, a storage technique that requires a precise process. Additionally, new techniques may be developed in future, which it would be beneficial for embryologists to practise on human embryos. In order to ensure that embryologists may be trained in techniques other than those associated with embryo testing, and for the sake of future-proofing the legislation in the event of techniques developing that we are not yet aware of, we agreed in Committee to take this away and consider it further. We have consequently tabled Amendment No. 27, which broadens the number of activities for which embryos may be used in training people such as embryologists.
In addition, Amendments Nos. 51, 62 and 113 make consequential changes to other provisions of the Bill which refer to embryo testing under Schedule 2. It is intended that these amendments will allow the proper training of embryologists and other members of the clinical profession to benefit future patients who require assisted reproduction in techniques that require the use of human embryos. I beg to move.
My Lords, I thank the Government for tabling these amendments on Report. We tabled an amendment in Committee on this subject, when I drew attention to the fact that there was some concern about adequate training in embryo storage, and generally in embryo research techniques. The noble and scientific Lords were, I think, in slight disarray on the matter then, and I did not get their full support. However, I understand that they are totally supportive now. I therefore thank the Government for bringing it back on Report.
My Lords, Amendments Nos. 29, 32 and 34, which stand in my name, would prevent embryo testing which seeks a tissue match for a brother or sister who is ill. They would stop the creation of what are generally known as saviour siblings. These amendments would prevent the Human Fertilisation and Embryology Authority granting licences for embryo testing for the purpose of creating saviour siblings. Embryo testing for the other reasons set out in Schedule 2 is unaffected.
The Bill bans embryo testing for sex selection for social reasons and I am sure that everybody agrees with that. However, it is argued that creating a tissue matching sibling whose tissue, bone marrow or other matter could be used to cure certain diseases which afflict a sick sibling can be justified. This proposition is presented in very simple terms, suggesting an easy technical procedure with an almost assured outcome involving no harm whatever to the selected embryo and an almost unconditional promise of a miracle cure and a happy ever after outcome for the sick sibling.
Before addressing the overarching ethical issue of the legitimacy or not of deliberately creating a human being so that his or her body tissue can be harvested for the benefit of another—an act which I argue is impossible to justify in any circumstances—I take noble Lords through some of the practical aspects of the technology. At the very least we should have a realistic analysis of what is involved. We have a duty to explore the reality rather than the hype of creating tissue matching babies. It is not a simple procedure and it gives no guarantee of a cure.
The process requires in vitro rather than natural conception. Of course, it is by no means guaranteed that the IVF used will result in viable embryos or in a pregnancy which will go to full term. We have already heard that there are real health risks to a mother from ovarian hyper stimulation, which is part of the IVF process. If the saviour sibling procedure promulgated in this Bill is accepted, is it right for a fertile woman to be subjected to infertility treatment carrying risks, bearing in mind her responsibility to her family, including at least one existing child?
When trying to produce a matching baby, multiple IVF cycles, increasing the health risks to the mother, would almost certainly be needed in order to create a large number of embryos, thereby maximising the chances of a tissue match. Of course, any non-matching or surplus embryos are destroyed. The testing process to identify a tissue match depends on removing one or two cells from the developing embryo around the eight cell stage—an invasive procedure which of itself may diminish the survival rate of the embryo in question. In addition, the longer term consequences of the technology involved—pre-implantation genetic diagnosis or PGD—are unknown. Children created in this way have yet to reach reproductive age. The tests that are undertaken to search for a tissue match are not being done for the benefit of that particular embryo. His or her interests are subservient to those of the sick family member.
The tests are expensive and are not 100 per cent reliable. A single cell from an embryo can be atypical—described technically, I am told, as mosaicism, and when used to identify genetic abnormality can result in either false positive or false negative results. Testing two cells is more reliable than just testing one individual cell but may further decrease survival rates for the biopsied embryo—not surprisingly, as two cells from an eight-cell embryo means a quarter of the whole. Some people question both from a physiological and a philosophical perspective whether an embryo which has a quarter of its cells removed remains the same embryo afterwards as before biopsy. If cells are atypical, what personal characteristics may have been lost along with the removed cells? The so-called saviour sibling may one day ask such a question.
We have a duty to address the probability of success. How likely is it that a tissue-matching embryo will be created? Answer: there is no guarantee of success. It will never be easy and, whatever the outcome, it will take at least a year before any tissue becomes available. If PGD is performed simply to identify matching tissue, the chance of success is estimated at one in four; but this figure decreases considerably when further tests are performed to select out embryos carrying genetic diseases.
In data on embryo biopsy across Europe collected for the European Society for Reproduction and Embryology, published in January 2005, it is recorded that of 14,500 fertilised embryos, there were only 298 pregnancies showing a positive heartbeat. These data relate to PGD to identify genetic disease and do not include added testing for compatible tissue typing, which is what the Bill proposes. As far as I can establish, no other national Parliament in the world has legislated to allow saviour siblings. Perhaps the Minister could advise us on that point.
To be fair, we hear in defence of the parents who go down this route that the selected tissue-matching baby is very much wanted and welcomed. That may well be the case, but only if it happens to fit the specific requirements. The non-matching embryos are sadly not welcomed by anybody at all.
During the passage of the Bill, serious concern was raised about the meaning of the phrase "other tissue". The Government have moved a step in the right direction by bringing forward Amendment No. 31 and I thank them for it. I welcome the move by the Government in seeking to restrict the practice in this respect, but it does not assuage my concerns about the fundamental ethical principle at stake here, and neither does Amendment No. 30, in the name of the noble and learned Lord, Lord Lloyd of Berwick. Moreover, the government amendment is not sufficient in its own terms. By using the word "whole", it does not preclude part of an organ. There is the possibility of part of a liver, for example, being taken from the unconsenting new baby.
Desperate parents, with the hope of a miracle cure for a sick child, may be persuaded of the legitimacy of some or all of these solutions. But we are here today to take a calm and objective view. The interests of the absolute welfare of the child who would be created must encourage us to resist the emotional force of the argument about the sick sibling.
I hope I have shown your Lordships how complicated and fraught with risk and uncertainty is the practical reality of trying to create a tissue-matching embryo. Even from a pragmatic medical perspective, we should look for more universally available, streamlined and cost-effective solutions. Thankfully, there is one such solution readily and universally available, and we do not have to resort to the deliberate manipulation of one child for the benefit of another in need of therapy. I refer to the routine collection of cord blood stem cells.
Cord blood stem cells hold a significant position among the miracle cells of today, but it is simply not necessary to create them by design. They are available naturally from the placenta and the umbilical cord every time a baby is born. The tissue-matching characteristics of such stem cells are particularly versatile—more so than bone marrow. Although a good match is ideal, a perfect match is not necessary. I ask whether we should not press the Government to raise the profile of cord blood donation by funding the banking of these cells together with investment in further research into their curative capacity.
Returning to the substance of my amendment, it is true that the HFEA has already permitted so-called saviour siblings in a handful of cases. Its decision to do so has been supported by the courts, but Parliament has never voted to allow the practice and, given the immense problems it creates, I believe that noble Lords should reject it.
Finally, the ethical issues are considerable and they constitute a fundamental obstacle. First, there is the question of potential harms to the parties involved, most obviously the harm inflicted by the destruction of unsuitable embryos. Secondly, at the very centre of our ethical thought—both religious and secular, deriving from philosophy as well as tradition—lies the principle that one may not degrade an individual human life by treating it as an instrument for the benefit of others rather than as something to be regarded and respected in its own right. If we deviate from that principle, we have no fixed grounds on which to stand in resistance to other claims to create and manipulate human life for various beneficial ends. Instead, we will be pulled by the demands of the day, and I have no intention of speculating how horrible that could be.
We are not dealing with having a child because one wants one, or even because one hopes that it will be a tissue match; it is a case of having a particular child only if it is compatible physiologically with the tissue of another. That all other embryos are rejected is confirmation of that fact. The designed child, for the duration of its life, will be witness to the intention of the designers and will always be vulnerable, both physically and psychologically, to further demands on its body. To manufacture a person in this way is to offend against the respect that is due to the integrity of that person, no matter how compelling the goal of trying to cure. I am therefore convinced that the right decision has to be total opposition to the deliberate creation of children as tissue donors for others. I urge noble Lords to support the amendment. I beg to move.
My Lords, I strongly support the amendment, which was moved so ably by the noble Baroness, Lady O'Cathain, and which takes us back to a debate that we held in Committee. I say to the Minister that there has been an attempt by the Government to accommodate some of the arguments that were raised then, and I am grateful to the Government for that, but significant questions remain. This evening, the noble Baroness has set out the philosophical arguments against tissue typing in the first place and therefore against creating the child who will be born to be a saviour sibling.
I remind the House that in November, in answer to a question from me, the noble Lord, Lord Darzi, said:
"The Bill does not limit which tissue can be used in the treatment of a sibling ... and the Human Tissue Authority must approve any transplants involving organs from living donors and for children who are too young to give consent".—[Hansard, 21/11/07; col. 869.]
That answer gave me cause for concern, and that is why I tabled amendments in Committee.
In a letter on
"Concerns have been raised that these decisions could envisage organs being taken for transplant. The Government accepts that this would not be a desirable state of affairs ... The proposed change"— which I think is Amendment No. 31—
"will make clear that a decision to allow embryo testing on the basis of providing a future organ transplant for a sibling would not be allowed".
As far as it goes, what the letter says sounds reasonable enough and seems to be an attempt to meet some of the points that have previously been made. However, as the noble Baroness said, the difficulty is that once we tissue-type in the first place we set these wheels in motion. When you tissue-type to test for umbilical cord or bone marrow, you have the genetic footprint of that child and then organs could be used after birth, even though this Bill does not set out to permit that.
My other concern is that in Amendment No. 31 we are being invited to include the words "other tissue" in the Bill. I hope that when the Minister replies to this debate about prohibition he will say something about what "other tissue" means, because that will influence how we vote later. Doctors have put it to me that it could mean taking part of a liver—not a whole liver—or a lobe from a lung, which could be used and identified as "other tissue". Because it might be regenerative, it might qualify under "other tissue". Obviously, that has considerable implications for the child from whom those tissues have been taken. Morbidity, even mortality, rates can be high. The noble Baroness, Lady O'Cathain, has done us a service by reminding us that there are profound questions here in allowing the principle to proceed at all.
I raised a question in Committee that I would briefly like to rehearse again this evening—I do not want to be repetitive, as that would be out of order. I ask the House to put itself in the place of the saviour sibling, who is torn between fear, guilt and love. How might the development of their life be disrupted? Tragically, the sick child might often die anyway. How would the saviour feel when the older brother or sister died? Guilt if they did not give the required part organs and, if they did give them, guilt and despair that their part organs were not good enough or given in time. What if the saviour had a major complication following the transplant or had their life disrupted by being taken out of circulation to recover at a crucial stage in their life, such as final exams? What, in a small percentage of cases, if they died? How would the family feel in those circumstances? These are not unreasonable questions.
The Government might object that it would be up to the Human Tissue Authority to decide whether to allow the transplant. However, if this legislation is passed, the Human Tissue Authority will have seen the signal from Parliament that it is perfectly all right to create a child as an organ donor and therefore will be under strong pressure to agree. There is also the test of best interest that the HTA has to use. However, this includes psychological, emotional and social best interests, as well as medical ones. Imagine that the saviour created as an organ donor is now utterly devoted to his older brother and does not want him to die. It could be argued that it would be much better for his psychological, emotional and social health to part with this or that part organ rather than to see his brother die. However, he should not have been deliberately put in that position in the first place. That is at the heart of the argument laid before us by the noble Baroness, Lady O'Cathain.
In her response in Committee, the noble Baroness, Lady Royall, indicated that this would be acceptable if a child could have their life expectancy extended by one, two or 10 years. Perhaps she would like to reconsider that in the light of the examples given about the kind of part organs that might be used in treatments for conditions such as cystic fibrosis. The Government have also repeatedly quoted the HFEA's seventh code of practice, which is concerned with the initial tissue typing. That is irrelevant if one considers the example of Dr Simon Fishel, the IVF expert, who told us that he is looking forward to creating kidney donors. I cited that example in Committee not because he is someone who has just got a view on this but because he is an HFEA peer reviewer, an external examiner and an inspector. Clearly, therefore, we would be imprudent simply to rely on the HFEA to stop embryos being tissue typed to create organ or part-organ donors.
We need cures for diseases of the sort that I have mentioned, but deliberately creating saviour siblings as organ or part-organ donors is not the answer. Furthermore, parents should not be put in the position of being able to make such a dreadful decision in such vulnerable circumstances. The Government have repeatedly cited the Human Tissue Act, passing the buck to the Human Tissue Authority and implying that it would be the same for any child after birth. However, let us be clear about this. It is not a comparable situation. Normal children are not deliberately created to be organ or part-organ donors for their older brother or sister.
It is an absolute sham to claim that a saviour sibling would be created for only umbilical cord blood and possibly bone marrow—and even for part organs. After birth, the child could be used for whole organs, as it would be immune-matched for the existing sick child. There would be diseases that could be helped partially by these other tissues but which might eventually require a whole organ. This might be known by the parents and the IVF clinician, but in their desperation to cure the sick child they might overlook the profound implications that that could have on the saviour sibling.
There are two fatal flaws in any attempt to limit what a saviour sibling could be created for. One is that once an embryo is immune-matched to the existing child, it is known to be immune-matched—period. The other fatal flaw is the ability of the Human Tissue Authority to grant permission after the child's birth for any of a variety of whole organs to be taken from it and transplanted. Three words out of the 44,363 words in the Bill—"or other tissue"—could consign a child to being created deliberately as an organ donor. The Government are suggesting one word—"whole"—but that could consign a child to being deliberately created from the outset as a part-organ donor and to being available after birth as a whole-organ donor. Once the child has been tissue typed, that possibility is inevitable.
In 1623, in TheTempest, Shakespeare crafted a line that is spoken by Miranda; 300 years later it was used, ironically, by Huxley; and now the phrase frequently occurs in our debates. Miranda is taken in by what she thinks is the beauty of mankind and explains:
"O brave new world that has such people in it".
However, she does not realise that those wondrous people have, of course, killed her father. There is nothing brave and nothing good in breeding babies for the purposes proposed. That is why I support the amendment tabled by the noble Baroness, Lady O'Cathain.
My Lords, I strongly support my noble friend. I shall not reiterate her arguments, but I want to raise the issue of the human rights of saviour siblings, on which the Government have been strangely silent. I have always believed that a child is a child is a child and I am fearful that the Government may well lead us down the route of setting up two classes of children: children and saviour-sibling children. On whatever side of the argument we sit in relation to embryology and so on, we should pause to consider what we are doing. As the noble Lord, Lord Alton of Liverpool, has just pointed out, once tissue typing begins, a child once created for this purpose will rapidly be seen as a commodity. A child is not a commodity; a child is not a donor; at best a child is a patient.
There are serious issues, which do not seem to have been addressed at all in the debates so far, about consent and who gives that consent. Children are children and not organ banks. We must begin to think much more profoundly about the human rights of children, set against the undoubted human rights of parents, their wish to have children and the undoubted hopes of the recipient sibling who wishes to be saved or to have some tissue used to save them.
Much to my surprise, this is an issue on which the human rights commentariat—as I think of them—has been strangely silent so far. Few of the usual human rights noble suspects are in their places in the Chamber this evening, but the human rights of the saviour sibling should be very seriously considered by your Lordships.
My Lords, I will add one short thought. I very much agree with the noble Baroness, Lady O'Cathain, about the seriousness of trying to create a child as a potential organ bank for an older brother or sister. Quite simply, one has to consider the power of the popular press. In any particular case, the popular press is likely to support the idea of saving a child who has some defect that might be resolved by the presence of a saviour sibling. However, I do not think that the popular press will appreciate the way in which the door has been opened to what the right reverend Prelate the Bishop of Winchester said was the danger of moving towards the commodification of the individual. I can think of no better instance in this Bill than this provision.
If we allow this, we treat the second child essentially as a commodity to be used and exploited by the first child or the first child's parents. The parents are almost certain, understandably, to be overwhelmingly concerned about rescuing their child. The Chinese have a saying: "After the first child, there is no other". Of course, that is not quite true, but one understands what is said about the emotional strength of a first child. The second child is therefore bound to be treated as, in a sense, ancillary—as not having full human rights, as the noble Lord, Lord Patten, says. That will lead on to the acceptance of the purchase of organs, which already happens all over the world, for the purpose of curing oneself or one's family. The devil take the hindmost when it comes to the child who becomes the unwilling donor of an organ, which is already to be seen all over Asia and Africa, with people buying up organs.
A line has to be set. That line has to respect the sacramental nature of the human being who is being asked to make this terrible sacrifice. In the case of the saviour sibling, that child will be under moral pressure to produce elements for his brother or sister. He or she will certainly not be able to make that decision in an independent way—in a selfish way, if you like—because of the nature of the pressures. I simply ask the House to consider for one moment what would be made in the Sun, the Daily Express, or the Daily Mail of a case where it looked as if a child could be saved by the birth of a tissue-similar brother or sister. The pressures would be huge to allow that. It is the responsibility of the Government to draw a line and say that we will not accept the commodification of children. I refer back to what the right reverend Prelate said earlier in this debate.
My Lords, is the difficulty of the noble Baroness, Lady Williams, that the embryo has been selected to be a tissue match or would her objections apply equally if a natural-birth second child was found to be a tissue match and there was a wish on the part of the parents—leaving aside the issues of consent for the moment—to ensure that material from the second child, whether bone marrow or whatever, be made available to the first child? Is it the design or the intention that presents her with the greater difficulty, or is it the effect that the second child may indeed turn out to be a tissue match even though it was not so intended?
My Lords, the noble Baroness, Lady Hollis, always asks acute questions. The objection is the deliberate creation of a second child for the purpose of being primarily an organ donor. That is to diminish the nature and the purpose of the second child by essentially producing it and creating it for this purpose. That is the objection. Incidentally, the objection is not about whether the tissue comes from an embryo or a more fully developed child. The issue is that the child is being treated as an instrument for the purposes of the parents and the other child and is not being treated for itself. If a child was a perfect tissue match, I appreciate that it would be a matter for the parents and, if the child was old enough, for the child itself to decide on what was to be done. But that is quite different from deliberately setting out to produce a child for the purposes of being an organ donor.
My Lords, I will press the noble Baroness a little further. Leaving aside again the issue of consent, would she have no objection in principle if the match was accidental? Is her objection only if the match is deliberate?
My Lords, as the noble Baroness indicated, the principle of the child being produced for this purpose would no longer hold good if the child was a tissue match by chance, rather than being deliberately set up in that way.
I have to add another point to this. If the child was not old enough to be able to make a judgment on this matter, the child would have to be fully taken into account in its own right and the parents would have to be treated in that way by the HFEA. The child's own rights would have to be respected. That is to do with recognising human rights. I suppose that one could add that up in practical terms by saying that, if the donation in no way affected the younger child's prospects of survival, of living a full life and of having the normal prospects that a child has, the objection would be far less strong than if there was some question of, as in the example given by the noble Lord, Lord Alton, part of a liver or something of that kind being attributed, or one kidney out of two. Then you begin to raise questions about the survival value of that child and it becomes a different story—a story about the rights of that child.
My Lords, I presided over the Human Fertilisation and Embryology Authority when permission was first granted for such an embryo to be selected. It was the case of the Hashmi family, and our decision was subsequently upheld by the decision of the judges in the House of Lords. I should say that the decision of the HFEA to grant permission in this case was roundly condemned by the media for the reasons that have been given by the supporters of this amendment. I add in parentheses that, a few years later, the HFEA refused permission to the Whitaker family in slightly different circumstances. Again, that was roundly condemned by the media, this time for being hard-hearted; in other words, one cannot win. When the HFEA gave permission to the Hashmis, it followed about a year of the most extensive internal ethical debate and some public consultation. Every aspect that has been so eloquently explored by the proponents was studied by the HFEA in an ethics committee then headed by a bishop.
On instrumentality, the feeling was that, ever since reproduction began until about 20 years ago, the question of choice in having children was not very real. Children came along and people had them for whatever reason they thought fit. I might even suggest that some titled families had children so that they could inherit the title. Others might have had more children so that they could till the earth, or whatever the situation might be. The motives were not questioned and to do so is very new.
The Hashmis already had one baby, conceived naturally, in an effort to try to match the tissue of the sick older child, Zain. The new baby did not match. The Hashmis might have carried on having children naturally, which is possibly a worse ethical situation and certainly more of a stress on the family than having PGD. In the event, there is only a one in 16 chance of finding an embryo that is free of the inherited disease and is a tissue match. Sadly, the Hashmis have not yet succeeded, as far as I know, whereas the Whitakers went to America and did succeed. Their children are healthy, as is the original saviour sibling, Molly Nash.
The only thing that worries me about the use of PGD for saviour siblings is that, while the use of the umbilical cord is fine, who will consent to the use of the tissue? When I taught family law a few years ago, permission could be given only by a High Court judge. I was surprised to hear that the Human Tissue Authority can give permission. It is, in a way, parti pris—geared up to human tissue donation. I would feel content if any donation other than the umbilical cord blood had to be sanctioned, as was the case in the past, by a family court judge. Those judges have had much experience in this for many years. That would provide satisfaction for those who feel concerned about it. As for the ethics of choosing and allowing the saviour sibling, they were carefully thought through and have a measure of public support. I oppose the amendment.
My Lords, that was, characteristically, an enormously valuable contribution from the noble Baroness. However, it seems that the logic of what she says, particularly when you start talking about a High Court judge, is that both Parliament and the judges often take the view that parliamentary direction on matters of substantial principle is a proper thing. Therefore, great as my respect for her is, I take issue with her on that point.
It is possible that if the noble Baroness had had longer to think of how to respond to the Minister's responses she might also have said that, were this saviour sibling legislation to be passed, it would make less extraordinary the judgment of parents that they should treat their naturally conceived child as an organ donor when it was in no state to consent to it.
I support the amendment. Among the most extraordinary things in this discussion is the language that slips off even the tongues of those who support the amendment—"create a child as an organ donor". That summary has been given a number of times by those supporting the amendment. It is a shocking collocation of words. I recognise, to the extent that one can from outside, the longings, desires and desperate anxiety that parents in this situation, with a chronically sick child, will be undergoing. It is responsible, fine and laudable that clinicians should want to do everything legally permitted to assist such a child and such parents. However, it seems to me that Parliament's purpose is to ask the question of whether that is right.
Should Parliament allow clinicians and parents to do such a thing? The points that the noble Lord, Lord Patten, I think, made about human rights are entirely accurate. I also recognise the point made by the noble Baroness, Lady Deech. Any of us who are parents, or who long to be parents, go on from there for all sorts of reasons—but this is another kind of reason, one that has a commodifying aspect and makes an instrument of a child. That is fundamentally questionable. Those of us who are parents or grandparents, as many of us are, know that whatever the temptation to do otherwise, part of being a parent is to defend your child from that kind of treatment, even by yourself.
It is extremely important that the law and we as parliamentarians look at the principles of this matter, resist these clauses and vote for the amendment. I cannot see how we can say—as Parliament has admirably done a number of times, particularly in the Children Act—that the child's interests are paramount but then go down this road.
My Lords, there have been some extremely powerful speeches on this amendment. I have been moved and swayed by people I thought that I would not agree with. The noble Baroness, Lady O'Cathain, divided her argument into two parts: the scientific arguments and the ethical arguments. With all due respect, the six scientific arguments she put forward can be met in a very straightforward way, but I shall not do so because I do not want to take the time of the House and it may be that the noble Lord, Lord Winston, may want to do so. I think that they can be met very easily.
The heart of the matter is the ethical issue. Like the noble Baroness, Lady Deech, I have been involved in it, although for the sake of the record I should say that I was not the original bishop who approved this as chair of the ethics and law committee. I could see the noble Lord, Lord Patten, shaking his head, thinking that it might have been me, but it was not. It was actually a bishop with a much more traditional reputation than I have. However, I was chair of the ethics and law committee when this once again came before it. I supported it because I believe that when parents have children they have a mixture of motives. They are not having another child simply in order to aid a sick sibling; they will want another child anyway. All of us have a range of motives when we do things, and I do not think that this is simply a question of instrumentality.
However, a new point has been stressed this evening, particularly by the right reverend Prelate the Bishop of Winchester. It is that if we allow this for the use of umbilical cord or bone marrow, it could create a culture in which people might think it more normal to use the organs of children and therefore there will be unfair psychological pressure on that child, perhaps even an infringement of its human rights. The question left in my mind is whether we have enough safeguards in place to ensure that once that child has been born, there will not be unfair psychological pressure on it and its parents for its organs to be used. Therefore, I was also interested in the suggestion of the noble Baroness, Lady Deech, that we need to ensure that that is dealt with by the judiciary, rather than the Human Tissue Authority.
My Lords, I follow the noble and right reverend Lord, Lord Harries of Pentregarth, exactly on his last point. In Committee, the noble Baroness, Lady Deech, asked whether it would have been a good idea still to have the procedure that would allow a case to go before a court for a judicial decision, rather than handing it over to the Human Tissue Authority. We discussed in Committee whether we could amend the Human Tissue Act. I took that issue to the Clerk of the Parliaments and specifically drew his attention to the point made by the noble Baroness, Lady Deech, in Committee. The argument was that if it was directly related to the main purposes of our Bill, an amendment would be in order.
Subsequent investigation suggested that it would not be sufficiently connected with the purpose of this Bill. Therefore, an amendment was not tabled to transfer the authority from the Human Tissue Authority to the judiciary. However, like the noble and right reverend Lord, I think that that would actually be the right answer. It was a great pity that the Human Tissue Act took that authority away from the court. There is a long and traditionally established pattern of children of people without the ability to consent being made wards of court. That is an admirable safeguard. It is a great pity that we cannot do that here.
On the issues raised by my noble friend Lady O'Cathain, the Joint Committee looked at the issues carefully. We came to the conclusion, for the reasons stated in this debate, that the process of a child being tested to see whether there is a tissue match is now well established and should not now be outlawed. What I miss from the amendments—perhaps I should have taken more trouble over this—is that my noble friend on the Front Bench, Lord Howe, suggested that the test of what organs could be used in those circumstances should be confined to regenerative organs. I am not sure that we have that proposal before us in any form at the moment. That is an attractive suggestion. It is quite different from half a liver, a kidney, or something, but would apply to bone marrow and other regenerative tissue. That would have far fewer ethical difficulties than what is currently contemplated.
I have some sympathy with those who say that the government amendment—simply saying that it does not apply to a whole organ; with great respect to the noble Lord, Lord Darzi—does not meet the case at all. Of course no one is going to take a whole lung, but you can take part of one. That is the point at which one would like to feel that there is a greater safeguard.
If I may say so, this is unfinished business. I hope that, when the Minister replies, we may get an undertaking from the Government to continue to consider the issue and see whether the Bill has got it right. With great respect to my noble friend Lady O'Cathain, I would not go the whole way with her and ban the whole process. I would not agree with that at all. I entirely take the point made by the noble Baroness, Lady Deech, and agree with her, but I do not think that we have got it right yet. It may well be that this will have to be put right in another place. Some valuable points have been be made during the debate this evening.
My Lords, I suppose I never thought 22 years ago when I had a conversation with Alan Handyside on a wet Sunday afternoon on the theoretical possibility of pre-implantation genetic diagnosis that I would end up in a debate like this in the House of Lords. The first children from this treatment of recognising a specific gene in an embryo diagnosed after a biopsy of that embryo are coming up to their 17th birthday. It will be 17 years next April.
I feel I ought to put in an interjection simply because my lab pioneered this technology. I am really sorry that I was not in my place when the noble Baroness, Lady O'Cathain, spoke but I imagine that she will find me a surprising supporter of some of the things that she has been saying. One of my concerns is something that has been in the news very recently. When you biopsy an embryo, you effectively take away one or at most two cells containing one or two molecules of DNA. What you are effectively doing is something which has been in the courts recently in Northern Ireland and is currently under scrutiny in the courts generally in the British—a form of low copy number DNA. Essentially, you are trying to establish the genetics of an embryo based on the tiniest possible amount of tissue in very controlled circumstances, unlike in criminal circumstances or where the courts are looking at age DNA, but none the less subject to all sorts of problems regarding the gene amplification and the risk of contamination of that DNA.
At present, that technology is by no means entirely safe. There are risks of making a wrong diagnosis—thinking that you have a particular tissue type when you have not, or getting a gene defect right when you have not. The history of PGD shows that from time to time mistakes have been made and an embryo affected by a disease for which there has been screening has been transferred to the uterus.
Here we have a particular case in point. Most of these cases will be in families where there is a gene defect already and therefore the scientists involved will not just be screening for one specific gene but for the gene which causes the defect and the series of genes which make up the tissue type of that embryo. Therefore, there is a very real risk of not making a correct diagnosis. I listened very carefully to the noble Baroness, Lady Deech, who says that the chances of getting it right are about one in 16. I am not sure what the mathematics are, but I imagine that the chances of getting it right every time are really quite low and even if it is correct, you still have the recognition that if that child grows up, its stem cells will be capable of being taken up by that embryo.
So the problem for me is, first, the serious risk of unreasonably raising the hopes of couples by a technology which at the moment is very rare. I think the noble Baroness would agree with me from her experience as chairman of the HFEA that these requests are exceptional. They are very unusual and it is interesting to notice that over the years they have not increased. So whatever your Lordships decide—I am not sure which way I would vote if there were a vote—I do not think it will make a huge difference to the practice of in vitro fertilisation in actual issues.
As a clinician—and I agree very strongly with the right reverend Prelate the Bishop of Winchester on this—it seems to me that we are at risk of being on a kind of slippery slope. In general I am not a great believer in the slippery slope, but even if we do establish a child who is compatible with its elder sibling and free of the gene defect, the problem is that if the initial stem cell transplant does not work, there is then the increasing pressure to consider what you might do next as the child grows up.
If there is organ failure, do you consider a renal transplant from that child, which is quite a feasible proposition? That gives rise to huge difficulties. I hear what the noble Lord, Lord Jenkin, is saying about regenerative organs, but I remind the House that a number of organs are regenerative that are solid tissues. The liver is one such organ that regenerates. This definition is not very clear, and it gives rise to a medical problem.
There is a real risk that children might be used, and therefore abused, with this technology, so we must consider this very carefully. I know that the noble Baroness, Lady Deech, has argued that the courts can protect such a child. She is right in theory, but in practice such children who are at risk cannot be protected, because even if the courts decide against a particular procedure for that child as a donor, there is still the family pressure and the notion that that child has in some way failed its elder sibling and therefore its parents. That is a real problem, which the House must consider this evening.
My Lords, I shall try to redress the balance in what I see as a very one-sided view of womankind, especially of women in this situation. We were asked whether it was right for a woman to subject herself to this procedure for the sake of an existing child, but I ask whether it is not her right, if this technique is available and it has been suggested to her, to choose to go down that road for her existing child. It is surely her choice to make, and she must make it.
We were also asked whether this child would become subservient—I think that was the term—to its sick sibling and a commodity for the use of the sick child. We must think a little harder about what goes on in women's minds and bodies. It certainly happened to me over three pregnancies and deliveries and to many patients with whom I have dealt in the past. Women always worry terribly about how on earth they will be able to love two or three babies as much as one. In fact, when the second child is born, 99.9 per cent of the time they are overwhelmed by exactly the same emotions towards that child as they were towards their first child.
We have so far not taken into account the fact that a woman, having given birth to a saviour sibling for her first child, will love that child just as much as she loves the sick child, and will therefore protect its interests and balance out the interests of the sick child with the needs of the healthy child. This needs to be said, because women are not stupid. They love their children, and they are not going to sacrifice one child whom they love dearly and who happens to be healthy for the sake of a sick child whom they also love dearly, as the options become more and more difficult.
If we are worried about the extent of the tissue that may be used from the saviour sibling, that again will depend on whether the mother is prepared to let her beloved child go through that procedure and whether she feels that it is in anyone's interests—the family's interests, her interests—to go that far. Once the child becomes old enough to make up their own mind, will they not be in the same position as a brother or sister who happens to match the tissue type of any other brother and sister in a family, all normally conceived, who would opt to give a kidney or a piece of their liver to a brother or sister? We have to have a more balanced view of how a mother will react in this situation and not totally reject this technology, which may be on offer.
My Lords, I am normally a fairly optimistic person. I like to look on the bright side and believe that everything will be all right in this best of all possible worlds. Lessons over the years have rather indicated that I am occasionally, if not frequently, wrong. It is a very happy picture, but simply not true that every mother loves every child. If the first child has become ill and, solely in order to help that sick child, the mother has had another child, which she hopes will be able to make the first child better, I am bound to say that I cannot go along with the happy notion that all of a sudden, although the child had been created to serve that purpose for a loved first child, all of that would be put at nought because the mother loved the second child as well. It would put the mother in a terrible dilemma. I am impressed, indeed, by what my noble friend said initially in introducing this amendment. I have the greatest concern about this and I would support her all the way, although I wish that what has just been said was always true.
My Lords, I have not dared to intervene so far because it seems to me that you need a double first in ethics to understand what is going on. I am slightly prompted by what the noble Baroness, Lady Tonge said, which was that if a mother has a saviour sibling, who has given some part of its body for the child that is ill, the mother will love that child just as much as the sick child. That may be so, but I wonder what the child will feel if it thinks that it has been brought into the world solely in order to provide a donor for a brother or sister.
My Lords, it is not always the case that the child is brought into the world just as a saviour sibling. It may be that the family in question fully intended to have other children.
My Lords, that may be so, but as I understand it, the Bill allows this to be done for the specific purpose of providing an organ. This is a very complicated subject, but you do not necessarily have to be a butcher to smell when the meat is bad. I find it very difficult to think, if I have understood correctly, that this Bill permits people to have babies for the sole purpose of providing organs for another sick child. It seems to me that this is taking science too far. In many respects it might be described and considered as grotesque. That is why I would vote for the amendment.
My Lords, I had not intended to speak on this issue except to say, very briefly, that the government amendment would make it impossible, under the terms of this clause relating to saviour siblings, to transplant whole organs. That is something that I would strongly support. Indeed, I would support a prohibition on the transplantation of part organs. There is a case, which we must at least consider carefully, that umbilical cord blood produced by a sibling—or indeed bone marrow, which is much less invasive—might cure a child suffering from a major, devastating genetic disease. For that reason, I would be a little uncomfortable if the Bill were to rule out that possibility, subject always to the kind of legal considerations and approval by a judge to which the noble Baroness, Lady Deech, has referred. I would be very uncomfortable if we ruled out that possibility altogether.
My Lords, before the noble Lord sits down, will he also confirm—I think we will agree about this—that if collection of the umbilical cord when a baby is born was routine, and we did that in every case, the dilemma we are facing this evening would be avoided, particularly in that context?
My Lords, this has been an important discussion which has raised many difficult and serious ethical issues. I am grateful to all noble Lords who have contributed to it.
The HFEA currently licenses, on a case-by-case basis, the screening of embryos where the intention is that the resulting baby's umbilical cord blood stem cells, or bone marrow stem cells, will be used to treat an existing sibling who has a life-threatening or serious illness.
The Bill clarifies the scope the HFEA has to make such decisions by setting out five purposes for which embryos can be tested, including one that specifically enables testing embryos for tissue type where there is a seriously sick older sibling. These amendments would prevent that happening.
Amendment No. 29 removes the tissue typing purpose so that it would not be possible to license embryo testing to find out the tissue type of an embryo where the older sibling could be treated with, for example, the cord blood cells of the resulting child.
Amendment No. 32 inserts a new sub-paragraph into Schedule 2 to the Bill which essentially bans the use of embryo testing where the purpose would be to establish whether the tissue of any resulting child would be compatible with that of their sibling for any purpose connected to the treatment of their sibling's medical condition. Amendment No. 34 limits the regulation-making power that is provided in the Bill to amend the provision relating to embryo testing so that the paragraph inserted by Amendment No. 32 could not be altered; thus ensuring that the ban on tissue typing is maintained.
To date the HFEA has licensed tissue typing for three conditions. If we were to accept this amendment we would be taking a backward step. In practice, tissue typing is only ever considered when all other options for successful treatment are exhausted; in other words, when there are no matched donors on the worldwide bone marrow registry or within the family.
Understandably, many noble Lords have expressed concerns about creating embryos for the purpose of removing tissue to treat another child. We acknowledge these concerns. However, we should remember that parents making this decision are often in a difficult situation with one very sick child and no other option. It is highly unlikely that any further child who happened to be born to such parents as a result of treatment would be anything other than loved and cherished.
The noble Baroness, Lady O'Cathain, spoke of the health risks to the mother and the potential implications to the family as a whole. I am sure that the parents would have reflected long and hard on such a difficult decision, and they will certainly be aware of all the risks involved. Following the creation of tissue-matched embryos and the birth of the resulting child, most frequently cord blood or bone marrow would be used in the treatment of the seriously ill older sibling.
Cord blood can be collected at the time of birth with minimal impact on the child born. The noble Baroness asked what the Government are doing to encourage cord blood donation. I believe that we are encouraging a cord blood bank, but I will write to the noble Baroness with further information.
If bone marrow is used, the Human Tissue Authority would oversee the transplants from children. The Human Tissue Authority and an independent assessor would have to be satisfied that the child's best interests have been properly considered and that the regulations and the Human Tissue Authority's codes of practice have been properly followed. Where a child donor is involved, the courts may also be involved to authorise what is in the donor child's best interests.
The Government decided on balance that the creation of embryos where the intention was to collect bone marrow for the treatment of a seriously sick sibling was appropriate, subject to these safeguards. Protection is in place by two regulatory authorities—the HFEA to license the creation of embryos for this purpose and the HTA to oversee transplants of bone marrow taken from children.
Many noble Lords have asked what "other tissue" means. I must emphasise that "other tissue" is intended to capture regenerative tissue other than whole organs. An example of such tissue would be the actual cells of the umbilical cord. Research has shown that the cells may have potential for future treatment.
The noble Baroness asked what effect the removal of two cells from the embryo might have. From thousands of children born worldwide following PGD there has been no evidence of harm to date.
The noble Lord, Lord Patten, and others, raised the issue of the child's human rights. It would not be lawful to remove any tissue from a child if that would be incompatible with the rights of the child under the European Convention on Human Rights. A parent could consent on behalf of a child, but only where that would be in their best interests, subject to final determination by the courts. Any decision in a child's best interests would have to comply with the convention.
I acknowledge and understand the concerns that have been raised about the use of embryo-testing technology for the purposes of tissue typing, but the provisions in the Bill allow the treatment of seriously sick children where there really are no alternatives for successful treatment. We think on balance that this is appropriate.
My Lords, the Minister referred to the existing institutions which would need to give their permission for this to go ahead—the Human Tissue Authority and HFEA. In the light of what the noble Baroness, Lady Deech, asked, where is provision made for there to be a final decision by the courts, unless she is considering a request for a judicial review or something of that kind?
My Lords, where children are involved in organ transplants in England, Wales and Northern Ireland, the Human Tissue Act requires that the Human Tissue Authority must approve any transplants involving organs from living donors. This would mean that, prior to any transplant taking place, the Human Tissue Authority would have to consider the individual circumstances. Where children are involved, the panel making the decisions should consist of no fewer than three members of the Human Tissue Authority. The code of practice of the Human Tissue Authority advises that before the removal of a solid organ from a child, whether competent or not, it is good practice for court approval to be obtained.
My Lords, this has been an interesting debate and I should like to thank every single person who has taken part. I will not detain the House by trying to get a proper summary of this discussion. The proposal we have considered in this debate breaches a fundamental moral principle and cannot even be shown to offer any great prospect of success. In all the contributions, there was little comment about my risk analysis question—the risk to the mothers and the risk to the saviour sibling both physically and psychologically. I am grateful to my noble friend Lord Patten for reminding us of the human rights of the child. I had that in an original draft and then forgot to put it in. That is an important issue because the child cannot give proper consent until the age of about 15 or 18.
I am rather disappointed that little attention was given to viable alternatives. The noble Baroness kindly said that she would write to me. Perhaps I should write to her with all the details. Already in the UK we have a centre of excellence at Newcastle University, where Professor Colin McGuckin and his team are performing world-class research into cord blood cells. If we truly want to win scientific laurel wreaths in the United Kingdom, there could not be a better place to target funding. I request that the Minister and the Government think about that seriously.
There is an opportunity tonight for this House to express, in a clear, coherent, cogent and intelligible manner, that human life is of intrinsic value and may not be rendered an unconsenting instrument of the welfare of others. To that end, I wish to test the opinion of the House.