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Human Fertilisation and Embryology Bill [HL]

moved Amendment No. 32: 32: Schedule 2, page 55, leave out lines 27 to 34 The noble Lord said: There is a typographical error in Amendment No. 39. It says ““Page 56, line 3”” but should read ““Page 56, line 30””. The cumulative effect of Amendments Nos. 32, 32A, 33, 34, 39, 40 and 41 would be to block tissue typing for the purposes of selecting an embryo that is an immune match to an existing child, to prevent children being used for organ donation after tissue typing for any purpose, to prevent the law being extended to allow children to be created to be organ and tissue donors, to limit the circumstances in which the creation of children as organ donors can take place, and to make the creation of children as organ donors a procedure of last resort. I was struck by the prescience and acuity of a comment in the 25 August edition of New Scientist. It is worth listening to an extract from the article in question: "““It is excellent news that parents in the UK will probably be allowed to have sibling saviours to save children with ‘serious’ rather than merely life-threatening diseases ... Perhaps legislators should now seize the opportunity not only to permit this far-sighted approach, but also to solve the donor organ crisis.""It should be possible to ensure that all children born to a couple are immunologically compatible so that, were one of the family to suffer a catastrophic organ failure, siblings would be on hand to provide another. Naturally, the elected saviour sibling would be required to provide the organ, although since the issue of consent does not arise with saviours at present, there is no need to suppose that this will be a problem in the future.""The scheme would, of course, work best for kidneys, as the saviours could rely on their spare to see them through; half a liver could also be donated without too much worry. A heart and/or lungs would be trickier, but it does not stretch the imagination to suppose that our brave scientists and legislators will be able to see a way around this inconvenience””." Let us first dispose of the casuistry that saviour siblings are donors. There is clearly something of a contradiction in using the word ““donor””, as a donor has to give consent, and that is manifestly impossible in what is proposed. Personal organ donation is often a generous and altruistic act, and many Members of your Lordships’ House will carry donor cards, but it is always an act freely entered into. It is an act of autonomy and personal choice but clearly a baby or a young child does not have any say in this momentous decision. Furthermore, reducing the present hurdle for permitting such an extraordinary presumption from ““life-threatening”” to ““serious”” conditions—which, as we know in another context, may mean a cleft palate or webbed fingers—should not be allowed to happen without deep and fundamental debate. The Bill proposes that an embryo can be tested to see whether it is an immune match for an existing sibling if the existing child suffers from a serious medical condition which can be treated by, "““umbilical cord blood stem cells, bone marrow or other tissue of any resulting child””." On 21 November, I asked the noble Lord, Lord Darzi, what the words ““or other tissue”” meant. He left the House in no doubt that it included organs, including organs from non-consenting children who are too young to give consent. He stated: "““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.]" Therefore, if the embryo is found to be an immune match, it will be implanted deliberately to become a source of spare parts for an existing child—its sibling—even when it is too young to give consent. My Amendment No. 32 goes to the heart of this matter. Many of your Lordships may not be too unhappy about permitting a child to be created to provide tissue from the umbilical cord, but the difficulty is that, once an embryo is tissue-typed and is known to be an immune match for an existing child, it will be available to provide any tissue or organ after birth, even if ostensibly it had been created only to provide umbilical cord blood. I shall say more about this later but I am proposing Amendment No. 32 in order to bring about a complete ban on tissue typing to produce a saviour sibling. Amendment No. 32A deals with the issue of life-threatening conditions. The Bill proposes that a saviour sibling can be created to provide tissue and organs for diseases in an existing child that are not even life-threatening but merely serious. When the Minister was asked why the Government have changed the criterion from ““life-threatening”” to ““serious””, he replied: "““The pre-legislative scrutiny committee recommended that the Bill should not be limited to life-threatening conditions but should also include serious conditions””.—[Official Report, 21/11/07; col. 869.]" As I said at Second Reading, autism has already been suggested by the chairman of the Joint Committee scrutinising the Bill as one of the disorders for which a saviour sibling could be treated to provide tissue. In an interview with the Daily Telegraph, he said that saviour siblings cannot currently be used to help children with autism but it was an example of the kind of serious condition that the committee believed should be tackled by the technique. It is hard to see what kind of tissue could help to overcome autism. However, if a child could be created to help with autism in an existing child, what else could be classified as serious? That is why I am proposing Amendment No. 32A. 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 to treat the existing child. Sub-paragraph (5) in Amendment No. 41 proposes that it would be a criminal offence to take organs from a saviour sibling, while permitting the taking of bone marrow. Sub-paragraph (6) of Amendment No. 41 proposes that it would be a criminal offence to cause harm to a child through any intrusive medical intervention in order to treat the existing child. 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 here, but it must also be added that the therapeutic benefits of creating tissue-matching babies have been inaccurately portrayed to the public as an easy procedure with guaranteed success. It is also usually argued that this is the only, or ideal, therapeutic route. In reality, the chances of the matching baby being created successfully are limited. IVF has a low success rate. Pregnancies do not always go to term. There is no guarantee, even in the case simply of cord blood, that there will be sufficient blood harvested, or that any subsequent transplant will be successful. 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: "““Cord blood stem cells, which we specialise in, already treat 85 clinical diseases””." 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 is routinely destroyed. There are, I understand—no doubt the Minister will correct me if I am wrong—only four NHS facilities in this country at the moment that do that collection. Contrast that with the situation in the United States. If we were to store the cord blood from every baby born in this country, we would have a bank of stem cells of infinite value, and if this was practised internationally on the largest possible scale, the therapeutic potential would be extraordinary.