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In Amendments Nos. 33 and 34 I propose that saviour siblings may be created only to obtain umbilical cord blood and that the disease that these stem cells can be proposed to treat has to be capable of being treated effectively by umbilical cord blood. As the Bill stands, the term “treated by umbilical cord blood” is very open to interpretation. It would seem not to matter how effectively the cord blood, or indeed any tissue or organ, could help the existing sibling. As the Bill stands, even if there was only a small chance of success in treating the disease, the saviour sibling could be created. That also raises the issue that if a child is created ostensibly only for umbilical cord blood and if the umbilical cord blood was not effective in treating the disease, subsequently any tissue or organ could be used to treat the existing child to see whether that would be more effective. It would be known that the child was an immune match for the existing sibling, as it had undergone deliberate tissue typing as an embryo to ensure that it was an immune match. Therefore any tissue or organ would be compatible. Thus to those of your Lordships who are concerned about the use of any tissue other than umbilical cord blood, both limiting tissue typing of saviour siblings to obtain umbilical cord blood, and inserting the phrase “treated effectively”, should ensure that taking other tissues or organs after birth need not occur.
Amendment No. 40 would permit a saviour sibling to be made only if there is no alternative treatment available, including umbilical cord blood from other donors. Amendment No. 41 deals with offences relating to harming saviour siblings, or taking tissue from them. The first paragraph of Amendment No. 41 proposes that it would be a criminal offence to take organs or bone marrow from a saviour sibling, or to subject it to any intrusive medical procedure in order
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Such amendments are necessary to avoid a saviour sibling being created ostensibly for umbilical cord blood, or for cord blood and bone marrow, but then used for organs or other tissues after birth. Using other organs would be possible if there are no safeguards in place, since it would have been implanted, following tissue typing, to be an immune match. I emphasise that this is not similar to using organs from a child created normally, or by IVF, without tissue typing. Saviour siblings are the result of deliberate intervention, involving an optional stage of tissue typing following IVF, to create a child to be a tissue or even organ donor for an existing child. The saviour sibling’s entire existence would be lived with the sentence of knowing that it had been created to be a tissue or organ donor.
As this Bill is currently drafted, we are being asked to legislate in favour of the creation of embryos whose tissue type is a match for a sick sibling. The intention is to carry such embryos through pregnancy in order to harvest the cord blood or bone marrow or other tissues—perhaps a liver or kidney; who knows?—later on in an attempt to cure the child already in existence.
Any parent who has had a sick child—most of us in this House will have been in that position at some time—and certainly any parent caring for a seriously ill child will understandably search desperately for cures, and nothing is more likely to evoke compassion in the hearts of the nation than a plea for help from such parents. We do have a duty as a caring society to offer the services of the very best medicine, and to continue the search for new and successful cures. Medicine, however, cannot function in a moral vacuum and many ethical considerations need to be taken on board, even when dealing with relatively simple issues, let alone a dilemma as complex as this one.
At first instance, this may well seem an heroic solution, an acceptable way to cure a seriously ill child. On the other hand, we may have a gut feeling that something is not right about this procedure. Gut feelings are absolutely valid and often represent the greatest wisdom. Our compassion for the welfare of existing sick children does not legitimise a trade-off with our legal responsibilities for the welfare of children, including those created by assisted reproduction. There is no reason why criminal law prohibitions on battery or abusive behaviour towards children should not apply as much to children created by IVF as to everybody else. In the current legal realm, how could any invasive medical intervention performed on a child not for its own benefit, when it could not possibly give consent, not be argued in law to be an assault against the bodily integrity and right to autonomy of that innocent child?
No child should be created specifically for the benefit of a third party, no matter how pressing the anguish of the parents. That is the absolute principle at stake
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The medical team awaiting the birth of a tissue-matching child to provide therapy is placed in an unenviable position, with a significant risk that best practice in pregnancy may be hijacked by the interests of the sick sibling. Worsening of the sick child could inspire thoughts of provoking a premature delivery. Such a response has already been recorded. What if the cord is around the neck of the new baby and needs to be sacrificed in the interests of good obstetric practice? Another reality is that, in order to create the matching baby, many unwanted embryos will be discarded in the process, including those diagnosed as carrying genetic disease and those who are disease-free. It is very much a hit or miss technology and it is criticised for some of the eugenics practices associated with embryo selection in the first place.
And what happens if the donation is not successful or—a rare but real likelihood—if the donation itself causes the death of the recipient, or the recipient dies anyway? Sadly, even when the tissue matches come from uncontentious sources—cord blood banks, unrelated donors and so on—the recipient is not always cured. What burden will that place on the designed baby? It is often recorded that children feel an irrational responsibility for the death of their parents or siblings. The psychological burden put on a tissue-matching child must not be dismissed in a rose-coloured enthusiasm for the benefits that might accrue to a third party. When the Minister replies, perhaps she will say what research has been done on the psychological impact of being a saviour sibling.
Are there any other ways to provide the cures in question? Thankfully, yes, and there is a middle ground here, to which the Committee should give deep and serious consideration, especially between now and Report. The lottery of trying to design a saviour sibling is a lengthy and unreliable process at best, making it immensely impractical and never likely to be universally practised. Instead, we should explore less controversial routes to the desired cures and, in particular, we should support the collection of stem cells from cord blood and invest seriously in this non-controversial and exciting source of transplant material.
Colin McGuckin, the professor of regenerative medicine at Newcastle University, in evidence submitted to the Joint Committee on the Human Tissue and Embryos (Draft) Bill, said:
But it was said in a meeting that I organised in the Moses Room of your Lordships’ House by Dr Peter Hollands, a senior scientist specialising in this area, that 98 per cent of cord blood produced in this country
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Lord Walton of Detchant: I interrupt my noble friend for one moment to say that there is now a major project under way, funded by the Wellcome Trust and the Medical Research Council and others, to produce a cord blood bank in the United Kingdom, which I think will be immensely valuable.
Lord Alton of Liverpool: I am very grateful for the intervention of my noble friend. I know that he has been personally involved in that project and I am delighted that it is under way. That is a very worthwhile step forward. Nevertheless, I think he would accept that at the moment, for us to destroy 98 per cent of cord blood, and to have only four NHS facilities routinely collecting it, is not a satisfactory situation.
It takes a speedy 24 hours to send cord blood stem cell transplant material from one country to another. That is the right way forward—not the unethical practice of designing babies as tissue donors. I beg to move.
The Deputy Chairman of Committees (Lord Brougham and Vaux): I advise the Committee that if this amendment is agreed to, I am unable to call Amendments No. 32A to 35 inclusive, or Amendments Nos. 39 to 41.
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Earl Howe: The noble Lord, Lord Alton, has set out a range of concerns about these provisions. While I cannot support him on all of them, I join him in expressing a considerable degree of worry about the idea of using a saviour sibling as a source of organs for transplantation. That is the subject of Amendment No. 35.
The whole concept of a saviour sibling lies on the borders of ethical acceptability. The idea of creating a particular child as a means to someone else’s ends devalues that person as an individual. Nor should we ignore the psychological effect that this knowledge may have on the person in later life, something to which the noble Lord rightly drew our attention. Many of us are prepared to reconcile ourselves to the notion of the saviour sibling because of the benefit brought to the other sibling, who would otherwise suffer or die. We are also willing to accept the process because the donation of cord blood does no harm to the donor sibling. Some of us—I am one—are willing to go further and countenance the donation of regenerative tissue such as bone marrow on the ground that, although invasive to the donor, the procedure should not, in normal circumstances, result in lasting harm. However, the donation of an organ, which is what the phrase “or other tissue” implies, is of a different order altogether. Organ donation results in lasting harm. While I have no objection to an adult taking an informed and voluntary decision to sacrifice a kidney, for example, to save the life of a close relation, it does not seem to
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The state is centre-stage here. As I understand it, if there is ever a question of a child donating tissue, the Human Tissue Authority is legally charged with taking that decision under the 2006 regulations. Of course, it must do so on the basis of the common law test of “best interests”, but “best interests” is a concept capable of being interpreted quite broadly. During the passage of the Human Tissue Bill, the noble Baroness, Lady Andrews, said:
“The noble Lord made several points regarding best interests ... We would argue that consent may well be in the best interests of a person lacking mental capacity if a carer or relative on whom they are dependent is in need of a transplant or other procedure requiring the use of their tissue, and without which the carer may be in danger of dying and, therefore, not in a position to take care of the person. That is not a far-fetched instance”.—[Official Report, 16/9/04; col. GC 469.]
Those words worried me at the time, and they still worry me. I should make it clear that the context of that debate was the power given to the Secretary of State over the storage and use of tissue taken from individuals who lacked mental capacity. It was not a debate about the powers given to the Human Tissue Authority to determine issues about the removal of tissue for transplant. Nevertheless, the point that I seek to emphasise is the broad way in which the expression “best interests” is capable of being interpreted.
I may be wrong, but I do not believe that, when the members of the Joint Committee considered saviour siblings and tissue typing, they had in their mind anything other than the donation of cord blood and bone marrow. I am not happy with the Bill as worded here. I would be much happier if the phrase “or other tissue” were qualified so as to make it clear that it was confined to regenerative tissue.
If this part of the Bill were to go through unamended, I would worry greatly that it would give the green light to the HFEA and clinicians to sanction the creation of saviour siblings for the explicit purpose of whole-organ transplantation. While such a decision in itself would not tie the hands of the Human Tissue Authority later on, it might well create a momentum and pressure that the HTA would find hard to resist. I hope very much that the Minister will agree to look again at the wording of this part of the schedule.
Lord Lloyd of Berwick: I intervene for the first time in these proceedings to support the amendments tabled by my noble friend Lord Alton. It is always important that any legislation should be as precise as is reasonably possible. That is especially so when one is dealing with a subject as sensitive as human embryology, on which reasonable people can, as we have learnt at Second Reading and again yesterday, take very different views.
“Life-threatening disease”—the language we heard—was something that we could all understand. I imagine that it would not be too difficult to make a list of life-threatening diseases on which doctors could agree. Why, then, are we changing from “life-threatening disease”? I am of course aware that the Joint Committee took the view that “life-threatening disease” was too
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However, I have much greater concerns—they were set out so clearly by the noble Earl—about the inclusion of the phrase “other tissue” in sub-paragraph 1(d). Umbilical cord stem cells are again something that we can all understand. The Joint Committee’s recommendation 17 did not suggest any change. It was the Government’s idea to include “bone marrow” and, certainly, “other tissue”, which presumably means any other tissue. That means that “umbilical cord” and “bone marrow” become otiose, but I shall put that lawyer’s point on one side.
As with “serious medical condition”, surely “other tissue” is much too vague? I have read a paper in which it is said that “other tissue” would certainly include organs such as the human kidney. I hope that that is not the Government’s intention, but if it is that raises serious questions. Following the noble Earl as well as my noble friend, I would have great doubts about the morality of creating a child for the specific purpose of donating a kidney to an elder sibling. I would have even greater concern for the effect on the child when he discovers that that is one of the reasons why he has been brought into the world. How, in those circumstances, could we ever be sure that he was donating the kidney truly voluntarily? This is the first time I have intervened in these debates, but we are on very dangerous ground.
Lord Harries of Pentregarth: I am grateful to the noble Lord and noble Earl for raising these issues. There is clearly widespread concern. The issue has vexed the HFEA now for a good number of years. Some years ago, we approved one application for a saviour sibling for a genetically inheritable disease. Then, we had another application for a disease in a sibling who was not genetic; we turned it down and then reconsidered it. It went backwards and forwards between the ethics and law committee and the HFEA. I say this to indicate to the noble Lord, Lord Alton, that the HFEA gives serious ethical consideration to these issues. However, I am glad that he and the noble Earl have raised the issue because I share a lot of their concerns.
We need greater clarity from the Minister about what is meant by “or other tissue”, as the noble and learned Lord, Lord Lloyd, emphasised. We also need much greater clarity about what is meant by “serious”, if we are not going to use the phrase “life-threatening”. As was said, the phrase “life-threatening” is reasonably clear.
The main point that I want to make is slightly to dispel the impression made by the noble Lord, Lord Alton. All Members of this Committee would agree with the Kantian principle that we should never treat any other human being simply as a means to an end. That is fundamental to any ethical view. However, a woman who is having a baby in this situation
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The psychological effect on the baby who will be born has been mentioned. The noble Lord, Lord Alton, said that for the rest of its life it would be hanging over it that it had been brought into this world simply for another person. I suggest that the psychological effect could be the opposite: if as the result of the child’s bone marrow a child who was dying is alive, that would surely enhance the sense of the preciousness and value of that child and the gratitude for it within the family. If we suppose that the child had died and the parents had a new child because there was a gap in the family, what would the psychological effect of that be? The psychological effect—this is an unknown, and we are only speculating—is more ambiguous and could be much more positive than the noble Lord suggested.
Overall, I am glad that the noble Lord and the noble Earl raised the matter. There are questions about the Bill, and it will probably have to be amended.
Lord Patten: I shall make two points, but as a preface to them I shall say that I strongly support the amendment tabled by the noble Lord, Lord Alton of Liverpool, and I was greatly taken by the arguments used by my noble friend Lord Howe in his lucid exposé of the dilemmas that face us when legislating in this area.
My first point is that this place should legislate only about those things that we can define. It is not that I distrust the courts of the future to help Parliament out or that I am fearful about what some future agency might do, helped on by regulation, to alter things. However, during yesterday’s Committee we had a good example of this. The noble Lord, Lord Darzi, who is in his place, explained that it is very difficult for some of the greatest figures in the medical world to agree a definition of an interspecies embryo. He read out a letter about that. That made me very uneasy because we were discussing legislating about something that the greatest medical brains in the country could not define. Today, the noble Lord, Lord Alton, has brought to the attention of the Committee saviour siblings and the misuse of the word “donor”. A saviour sibling cannot, by definition, be a donor so as presently drafted the Bill uses highly inexact language. I fear that we shall have to struggle with these fiendishly difficult matters of definition if we are to proceed usefully in this Committee and if great trouble is not to be caused on Report.
6.15 pm
My second point is the noble Lord, Lord Alton, is right to say that medicine cannot and should not proceed in a moral vacuum. That point was also strongly made by my noble friend Lord Howe. He referred to the borderlands, the uneasy frontier land, between what is ethical and what is not. This cannot be a morality-free zone. For fear that noble Lords may
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The Lord Bishop of Winchester: I am grateful for the speeches we have heard, in particular, for those of the noble Lord, Lord Alton, and the noble Earl, Lord Howe. I want to go the whole way with the noble Lord, Lord Alton, in his amendments. I regret not being able to be present at Second Reading or yesterday, but that has given me the opportunity of reading the Second Reading debate, yesterday’s debate and the preparatory material all at one go. That prepared me to speak now.
I am not convinced by my friend the noble and right reverend Lord, Lord Harries, who turned the question about instrumentality upside down. That seemed not subtler than I could follow but subtler than is acceptable, but he and I have found ourselves in that position before and he will not be surprised at that reaction.
On asking the Government for clarity about “other tissue”, it seems to me that the phrase is precisely designed not to be clear but to be broadly inclusive. I should be surprised if the Minister is able to offer us any clarity about it.
The noble Lord, Lord Alton, spoke about gut feelings. I want to put those into words, as the noble Lord, Lord Alton, would have been able to do, but he had much else to say. Those gut feelings are very widely held. Noble Lords will, like me, have had a lot correspondence on this issue and will know that this is one of the points on which gut feelings have been widely expressed. The view held by the high-church atheists mentioned by the noble Lord, Lord Patten, is widely held whether by those of Christian or other faiths or none, but I shall put it in Christian terms.
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