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Human Fertilisation and Embryology Bill [HL]

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””.—[Official Report, 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 8 January, the noble Lord said: "““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 The Tempest, 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.