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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
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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.
Lord Harries of Pentregarth: 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
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9.30 pm
Lord Jenkin of Roding: 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
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Lord Winston: 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.
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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.
Baroness Tonge: 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.
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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.
Baroness Knight of Collingtree: 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.
Earl Ferrers: 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.
Baroness Tonge: 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.
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Earl Ferrers: 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.
Lord Walton of Detchant: 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.
Lord Alton of Liverpool: 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?
Baroness Royall of Blaisdon: 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
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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.
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