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The noble Baroness said: My Lords, the draft Bill provides for embryo testing to be carried out for the purposes of determining tissue type where there is a sick older sibling who could be treated with cord blood stem cells, bone marrow or other tissue of any resulting child. Concerns were raised in Committee that “other tissue” could include whole organs—for example, kidneys—and that the Bill could permit embryo testing for tissue type where there was an intention that any resulting child could be used as an organ donor for their older sibling. This was not in fact the intention of the use of “other tissue”. This term was used to ensure, for example, that the potential use of cells of the umbilical cord rather than the cord blood could be considered. The main use of this technology would be when someone suffers from a life-threatening blood condition which could be treated by cells of the cord blood or bone marrow where there are no compatible donors on the worldwide bone marrow register or in the family.
In addition, in the future other types of regenerative tissue could be used for treatment, perhaps where a small number of cells could be removed from a donor for culture. In previous discussions this has been referred to as regenerative tissue, as the body could compensate for the loss of a small amount of cells without lasting harm to the donor. The amendment would continue to allow for tissue typing in these circumstances, subject to a licence by the regulatory authority. Taking into account the concerns expressed in Committee, this amendment limits “other tissue” by clarifying that the term would not include any whole organ of the resulting child. The result is that it will now not be possible to license embryo testing for tissue type where the intention is an organ transplant for the older sibling. The use of organs from children in transplantation is governed by the Human Tissue Act, or in Scotland the Human Tissue (Scotland) Act. The Bill does not change this position. The amendment still allows embryo testing where the intention would be to treat the older sibling with other types of tissue from any resulting child, such as bone marrow, cord blood or, as discussed in Committee, types of tissue other than whole organs.
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I am grateful to all noble Lords for their useful and informative comments on this issue. The Government have listened and have brought forward this amendment in response. I beg to move.
Lord Alton of Liverpool: My Lords, I raised this matter last November with the Government. At that time, as the noble Lord, Lord Darzi, will recall, when he replied to my Written Question it was the Government’s intention to include whole organs in the Bill. I am grateful to him and to the Government for making some change in this area, but I still have some reservations and I would be grateful if the Minister, when she responds to this brief debate, could say something about what will happen in the case of parts of organs. In Committee and at the earlier stages of Report I raised the issue of what happens if part of a liver or part of a lung is taken, and whether the Bill will permit that to occur.
The noble Lord, Lord Darzi, kindly sent to a number of noble Lords a letter dated 21 January that sets out a series of useful points about this question. Does the Minister agree that it would a good letter to place in the House Library so that all noble Lords would be able to read it? In that letter the noble Lord says:
“Several noble Lords have proposed the term ‘regenerative tissue’ could be used in this context. If this term were used, it might explicitly exclude the use of cells of the umbilical cord that we are trying to capture as these may not be considered to be regenerative”.
There is no difference between anyone in this House about the desirability of using umbilical cord. Many of us have made the point that to routinely destroy 98 per cent of all cord blood, as we do in this country at this time, and to have only four National Health Service hospitals collecting cord blood is itself something that we need to address. I hope the noble Baroness will say a word about that and consider again, before the Bill goes to another place, whether it might be possible to specifically exclude umbilical cord and refer to that in the Bill, and to include “regenerative tissue” as distinct from those things that, once taken, might not properly regenerate. There are levels of morbidity and mortality associated with the removal of parts of organs, let alone whole ones.
Earl Howe: My Lords, I intervene briefly to thank the noble Baroness for having considered this issue so carefully and for bringing forward this amendment. It is very welcome but, as she rightly said, it addresses only part of the concern that was the focus of our debate in Committee. Any decision on whether an organ may or may not be transplanted from a child falls outside the scope of the Bill and is the province of the Human Tissue Authority, based on the merits of each case put to it. While the amendment is decidedly welcome, so far as it goes, because it would prevent embryo testing with a view to carrying out a whole organ transplant, it does not, of course, address whether such an organ is actually transplanted in practice. I am sure that I speak for many of your Lordships when I say that I am grateful to the Government for their consideration.
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Lord Walton of Detchant: My Lords, I support the amendment, which is very welcome in the light of our debate in Committee. At that time, I was concerned about the point that my noble friend Lord Alton made about part organs; I was even tempted to suggest that the amendment should include part organs. Then I realised, of course, that some of my own research has been in the field of muscle disease and I suppose that taking a tiny sample of muscle by a needle biopsy could be construed as taking part of an organ. For that reason, I think that the amendment is better as it stands and no attempt should be made to include part organs in it, even though we all have concerns, as my noble friend Lord Alton said, about taking part of a liver or a lung. This is a welcome amendment which I warmly support.
Baroness Royall of Blaisdon: My Lords, I am grateful to noble Lords for their broad support. We would be delighted to place a copy of my noble friend’s letter in the Library of the House. With regard to parts of an organ, the Bill has been drafted in this way to allow the use of cells of the umbilical cord or, for example, if it were possible in the future to treat conditions with cells cultured from a small biopsy from the liver or any other organ. The noble Lord, Lord Walton, has clearly explained other potential uses of regenerative tissue.
On Question, amendment agreed to.
[Amendment No. 33 had been withdrawn from the Marshalled List.]
Earl Howe moved Amendment No. 33A:
“(4) For the purposes of sub-paragraph (1)(c) and (d) “serious” means life-threatening or impairing severely the quality of life of a person with the disability, illness or condition.”
The noble Earl said: My Lords, I shall speak also to Amendment No. 112A. This brings us back to the definition of “serious”. I should like to start at a slightly different point from the one that was the focus of the amendment in the name of the noble and learned Lord, Lord Lloyd. New subsections (9), (10) and (11) of Clause 14, which would amend Section 13 of the Act, focus upon pre-implantation genetic diagnosis and take us to a particular aspect of that issue which, but for these provisions, many of us might not otherwise have thought much about. They explicitly prohibit embryos being selected with a view to increasing the chance of having a child with a serious disability or medical condition. Consciously to wish such a disability or condition on a child may seem extraordinary, but there have been well documented cases where parents who are disabled in a particular way have expressed a desire to have a child with the same disability. I find that idea repellent because it ignores one of the issues central to any IVF procedure, namely, the future welfare of the child. Therefore, I wholly support a ban on that type of embryo selection. The techniques available to diagnose the presence of genetic conditions in any embryo should be used, if they are used at all, to reduce the risk of a child being born with a serious handicap and to reduce the risk of suffering.
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Over the years, this type of pre-implantation diagnosis has been carried out in a sensitive and responsible way by clinics on behalf of patients. It is not a technique deployed for trivial purposes. On the contrary, it is seen very much as a last resort in cases where a couple have been unable to produce a healthy child by natural means.
Two problems have caused concern. One of them is the time that it sometimes takes for the HFEA to allow a procedure to go ahead. The need for the HFEA to approve a particular condition as being serious enough to warrant pre-implantation diagnosis often means a considerable delay for couples wishing to access the procedure.
It is absolutely right that each case should be considered on its merits. There should be sufficient flexibility in the system to allow that to happen. At the same time, there is an argument for encouraging the HFEA to look at ways of shortening the decision-making process. For example, the BMA suggested that that could be done by having, in the first instance, a set of broad criteria included in the Act, with the scope and interpretation of those criteria fleshed out for clinics in the form of HFEA guidance.
If we look at Schedule 2 in conjunction with the provisions in Clause 14, those broad criteria for pre-implantation diagnosis and screening are indeed stated. Schedule 2, in new paragraph 1ZA(1)(c), allows for an embryo-testing licence to be issued:
The question begged by this wording, similar to that in Clause 14, is: what does the word “serious” mean—serious for whom? Most would immediately say, “Serious for the child in terms of the degree of suffering or the extent to which life expectancy is curtailed as a result of the child having the condition in question”. We do not mean serious for the NHS or the parents in looking after the child or serious for the parents in having to bring up a child who may not be 100 per cent able bodied. The seriousness of the illness or condition is surely defined, for most of us, from the point of view of the child when they are born. Therefore, we should think of setting out a broad definition of what is meant by serious in the Bill. This would potentially assist the HFEA in terms of Parliament’s intentions and it would address a second problem.
At the moment, there are rare circumstances in which patients, having had their embryos tested, find that they have to choose between a poor quality embryo which has no adverse abnormality and a good quality one which does have such an abnormality. The first, if it is implanted, is unlikely to result in a pregnancy. The second is much more likely to do so. As far as possible, we should try to avoid new subsections (9), (10) and (11) being interpreted in a way that would make it impossible to take a reasonable decision in such a case. Without a broad steer on what should be
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There is an equally important concern in relation to so-called saviour siblings. The Joint Committee on the draft Bill recommended that the practice of selecting for saviour siblings should not be restricted to life-threatening conditions—as we have just been debating—and that “life-threatening” should be replaced by “serious”. The Government accepted that recommendation. Personally, I have no problem with the change, provided that we know in broad terms what we mean by “serious”. Again, we surely mean serious from the point of view of the child in terms of its likely future suffering or the risk to the life of the child.
The whole concept of a saviour sibling is, ethically speaking, a difficult one. Some people find it impossible to countenance at all; others will do so only in a narrow range of cases. That is why, if we are going to extend the legal grounds on which tissue matching is to be permitted for the creation of saviour siblings and avoid the possibility that the process will be invoked for reasons that are less than compelling, we need to spell out in clear terms how we want the statute to be interpreted. The seriousness of the condition in this context is surely about the probability that it will end a person's life prematurely or cause the person a degree of suffering such as to impair their quality of life to a severe extent.
Some might argue that there are serious illnesses and conditions that fall into neither of those categories: the noble and learned Lord, Lord Lloyd, hinted at that very point earlier on. It is a perfectly respectable line to adopt. But the very fact that there is room for discussion on that point makes it all the more important for us to make sure that the terms in the Bill are defined in ways that are not overly prescriptive but, at the same time, we should leave all concerned in no doubt about what was intended. I believe that the definition that I have proposed is what the Joint Committee intended and I hope very much that the Minister will look at the amendments positively. I beg to move.
Baroness Finlay of Llandaff: My Lords, I regret that, because of circumstances completely beyond my control—rain and trains—I was unable to be here for the first amendment. However, I would like to speak to this amendment which is extremely carefully and well worded. One of the difficulties that we have is that the law lays down a black and white division between what you can and cannot do and in medicine we deal in shades of grey right across the spectrum. I will confine my remarks about this amendment to saviour siblings, although I think it applies equally well and is needed just as much at other points in the Bill.
The difficulty is that what is serious to one person is not serious to another. Medical science is moving on very rapidly and we are now making legislation that we will not revisit in the near future. I will use as an example a condition for which at the moment there is no talk of saviour siblings, so this is blue-sky thinking—psoriasis. Overwhelming psoriasis that affects the whole of a person's skin can be a devastating disease, but
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The other difficulty with “life-threatening” is that you cannot wait until the child who is ill is actually dying: you need to think about the saviour sibling concept earlier. The amendment addresses that neatly and beautifully. Without it, I fear that the line may shift and shift until there is increasing pressure to go for aesthetic biological perfection rather than being able to accept the broad spectrum of humanity. Surely, we should be considering saviour siblings only when a condition really is life-threatening and there is strong evidence that without a saviour sibling the child will die.
Lord Harries of Pentregarth: My Lords, I very much welcome the amendment in the name of the noble Earl, Lord Howe. Before coming to my reason for that, I address his point about delays, to do with PGD, to applications being considered by the HFEA. I hope it will help the House if I indicate that it probably was true when PGD first started. It took quite a long time to go through the system, because each condition had to be considered on its own. The present policy is that once a condition has been licensed in principle, and the laboratory has a licence to carry out PGD, the whole process is speeded up. They do not have to consider again on an individual, case-by-case basis. Something like 70 conditions, some of them very rare, have already been licensed in principle.
That said, I believe that the amendment of the noble Earl, Lord Howe, will make the job of the HFEA easier. It could potentially speed up the process further. As he has already indicated, there is an element of judgment involved. We cannot be precise on this, but the phrase,
seems to set down a criterion that will make it easier for the HFEA to exercise its judgment when these applications come before particular licence committees.
Lord Winston: My Lords, I feel rather happier with this amendment than I did with that of the noble and learned Lord, Lord Lloyd. There are a couple of things I that would like to say, which are, I think, highly relevant. I do not entirely agree with the noble Baroness, Lady Finlay, about one issue. I do not believe that medical practice and research are progressing so quickly that we cannot establish basic ethical rules about how we manage things in law and regulation. Things are not moving that quickly. It is very obvious in the case of pre-implantation. After all, as I mentioned the other day, the first child is now coming up for 18. It
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It is not entirely desirable to have every disease process regulated in quite the way that the noble Earl, Lord Howe, suggests for one very good reason. There is a much greater expert on muscular dystrophy than myself in this House: the noble Lord, Lord Walton. The defect in the dystrophin gene is found in somewhere between 2.25 million to 2.5 million letters of the DNA alphabet. There are at least 400 or 500 different misspellings that can cause a form of muscular dystrophy, and those different muscular dystrophies will have different prognoses. Some will lead to relatively minor weakness, with a good chance of longevity. Others are totally devastating.
Lesch-Nyhan syndrome is a much rarer disease, which affects only boys. No single family in the United Kingdom has precisely the same mutation as another; everybody has a slightly different mutation. The manifestations of that disease can be absolutely devastating. These children may frequently expose themselves to damage. They mutilate themselves; they bite their tongues off; they often have to have their teeth extracted to prevent that happening, in case they die of the infection. It is the most brutally revolting disease, which I will not describe in detail because it really is that unpleasant.
Even with cystic fibrosis—perhaps the most common disease that is a recessive disorder—the nature of the mutation makes a very big difference to the quality of life afterwards. Therefore, the idea that permission should be given in each case is not terribly useful. There has to be a degree of latitude in how this is done and, in many ways, the proposition in the amendment of the noble Earl, Lord Howe, fits the bill beautifully. In some mutations one might say that screening is not suitable but in others it clearly is.
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Baroness Butler-Sloss: My Lords, it is with some regret that I oppose this amendment, because, having heard what noble Lords have said about it, I can see distinct advantages in it. It may be that doctors can come to understand what is meant by “quality of life” rather better than lawyers and judges. When I was a judge and I had to decide whether a very young baby or, at the other end of the spectrum, a severely ill elderly person should be given treatment to keep them alive, I and the judges of the Court of Appeal, of which I was once a member, were, where possible, extremely careful not to use the phrase “quality of life”.
As the noble and learned Lord, Lord Lloyd, said, that is a highly subjective phrase. What for some people would be a way of life that they absolutely could not endure would, for other people who had to endure it, be something worth living. Some people might be suicidal having, for instance, very severe back injuries which make them tetraplegic. Others live as tetraplegics with a quality of life that would be astonishing to most of us in this House, I suspect. Therefore, it
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Lord Mackay of Clashfern: My Lords, as has been said, the Joint Committee recommended the change from “life-threatening” to “serious”. As a member of that committee, I thought that that was a reasonable suggestion in the circumstances. The kind of considerations mentioned by the noble Lord, Lord Winston, on this amendment, and by the noble Lord, Lord Turnberg, on the previous amendment, seem to go towards a definition of something that was not necessarily life-threatening but was still very damaging to the health of the person in question. Therefore, so far as I was concerned, that was what “serious” meant. After all, it is an ordinary word of the English language and there is a limit to the extent to which it is right to define ordinary words; but, as some of your Lordships have pointed out, “serious” has been used in a context that has led to a surprising result by including something that some noble Lords would not be prepared to include.
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