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Human Fertilisation and Embryology Bill [HL]

moved Amendment No. 29: 29: Schedule 2, page 55, leave out lines 27 to 34 The noble Baroness said: My Lords, Amendments Nos. 29, 32 and 34, which stand in my name, would prevent embryo testing which seeks a tissue match for a brother or sister who is ill. They would stop the creation of what are generally known as saviour siblings. These amendments would prevent the Human Fertilisation and Embryology Authority granting licences for embryo testing for the purpose of creating saviour siblings. Embryo testing for the other reasons set out in Schedule 2 is unaffected. The Bill bans embryo testing for sex selection for social reasons and I am sure that everybody agrees with that. However, it is argued that creating a tissue matching sibling whose tissue, bone marrow or other matter could be used to cure certain diseases which afflict a sick sibling can be justified. This proposition is presented in very simple terms, suggesting an easy technical procedure with an almost assured outcome involving no harm whatever to the selected embryo and an almost unconditional promise of a miracle cure and a happy ever after outcome for the sick sibling. Before addressing the overarching ethical issue of the legitimacy or not of deliberately creating a human being so that his or her body tissue can be harvested for the benefit of another—an act which I argue is impossible to justify in any circumstances—I take noble Lords through some of the practical aspects of the technology. At the very least we should have a realistic analysis of what is involved. We have a duty to explore the reality rather than the hype of creating tissue matching babies. It is not a simple procedure and it gives no guarantee of a cure. The process requires in vitro rather than natural conception. Of course, it is by no means guaranteed that the IVF used will result in viable embryos or in a pregnancy which will go to full term. We have already heard that there are real health risks to a mother from ovarian hyper stimulation, which is part of the IVF process. If the saviour sibling procedure promulgated in this Bill is accepted, is it right for a fertile woman to be subjected to infertility treatment carrying risks, bearing in mind her responsibility to her family, including at least one existing child? When trying to produce a matching baby, multiple IVF cycles, increasing the health risks to the mother, would almost certainly be needed in order to create a large number of embryos, thereby maximising the chances of a tissue match. Of course, any non-matching or surplus embryos are destroyed. The testing process to identify a tissue match depends on removing one or two cells from the developing embryo around the eight cell stage—an invasive procedure which of itself may diminish the survival rate of the embryo in question. In addition, the longer term consequences of the technology involved—pre-implantation genetic diagnosis or PGD—are unknown. Children created in this way have yet to reach reproductive age. The tests that are undertaken to search for a tissue match are not being done for the benefit of that particular embryo. His or her interests are subservient to those of the sick family member. The tests are expensive and are not 100 per cent reliable. A single cell from an embryo can be atypical—described technically, I am told, as mosaicism, and when used to identify genetic abnormality can result in either false positive or false negative results. Testing two cells is more reliable than just testing one individual cell but may further decrease survival rates for the biopsied embryo—not surprisingly, as two cells from an eight-cell embryo means a quarter of the whole. Some people question both from a physiological and a philosophical perspective whether an embryo which has a quarter of its cells removed remains the same embryo afterwards as before biopsy. If cells are atypical, what personal characteristics may have been lost along with the removed cells? The so-called saviour sibling may one day ask such a question. We have a duty to address the probability of success. How likely is it that a tissue-matching embryo will be created? Answer: there is no guarantee of success. It will never be easy and, whatever the outcome, it will take at least a year before any tissue becomes available. If PGD is performed simply to identify matching tissue, the chance of success is estimated at one in four; but this figure decreases considerably when further tests are performed to select out embryos carrying genetic diseases. In data on embryo biopsy across Europe collected for the European Society for Reproduction and Embryology, published in January 2005, it is recorded that of 14,500 fertilised embryos, there were only 298 pregnancies showing a positive heartbeat. These data relate to PGD to identify genetic disease and do not include added testing for compatible tissue typing, which is what the Bill proposes. As far as I can establish, no other national Parliament in the world has legislated to allow saviour siblings. Perhaps the Minister could advise us on that point. To be fair, we hear in defence of the parents who go down this route that the selected tissue-matching baby is very much wanted and welcomed. That may well be the case, but only if it happens to fit the specific requirements. The non-matching embryos are sadly not welcomed by anybody at all. During the passage of the Bill, serious concern was raised about the meaning of the phrase ““other tissue””. The Government have moved a step in the right direction by bringing forward Amendment No. 31 and I thank them for it. I welcome the move by the Government in seeking to restrict the practice in this respect, but it does not assuage my concerns about the fundamental ethical principle at stake here, and neither does Amendment No. 30, in the name of the noble and learned Lord, Lord Lloyd of Berwick. Moreover, the government amendment is not sufficient in its own terms. By using the word ““whole””, it does not preclude part of an organ. There is the possibility of part of a liver, for example, being taken from the unconsenting new baby. Desperate parents, with the hope of a miracle cure for a sick child, may be persuaded of the legitimacy of some or all of these solutions. But we are here today to take a calm and objective view. The interests of the absolute welfare of the child who would be created must encourage us to resist the emotional force of the argument about the sick sibling. I hope I have shown your Lordships how complicated and fraught with risk and uncertainty is the practical reality of trying to create a tissue-matching embryo. Even from a pragmatic medical perspective, we should look for more universally available, streamlined and cost-effective solutions. Thankfully, there is one such solution readily and universally available, and we do not have to resort to the deliberate manipulation of one child for the benefit of another in need of therapy. I refer to the routine collection of cord blood stem cells. Cord blood stem cells hold a significant position among the miracle cells of today, but it is simply not necessary to create them by design. They are available naturally from the placenta and the umbilical cord every time a baby is born. The tissue-matching characteristics of such stem cells are particularly versatile—more so than bone marrow. Although a good match is ideal, a perfect match is not necessary. I ask whether we should not press the Government to raise the profile of cord blood donation by funding the banking of these cells together with investment in further research into their curative capacity. Returning to the substance of my amendment, it is true that the HFEA has already permitted so-called saviour siblings in a handful of cases. Its decision to do so has been supported by the courts, but Parliament has never voted to allow the practice and, given the immense problems it creates, I believe that noble Lords should reject it. Finally, the ethical issues are considerable and they constitute a fundamental obstacle. First, there is the question of potential harms to the parties involved, most obviously the harm inflicted by the destruction of unsuitable embryos. Secondly, at the very centre of our ethical thought—both religious and secular, deriving from philosophy as well as tradition—lies the principle that one may not degrade an individual human life by treating it as an instrument for the benefit of others rather than as something to be regarded and respected in its own right. If we deviate from that principle, we have no fixed grounds on which to stand in resistance to other claims to create and manipulate human life for various beneficial ends. Instead, we will be pulled by the demands of the day, and I have no intention of speculating how horrible that could be. We are not dealing with having a child because one wants one, or even because one hopes that it will be a tissue match; it is a case of having a particular child only if it is compatible physiologically with the tissue of another. That all other embryos are rejected is confirmation of that fact. The designed child, for the duration of its life, will be witness to the intention of the designers and will always be vulnerable, both physically and psychologically, to further demands on its body. To manufacture a person in this way is to offend against the respect that is due to the integrity of that person, no matter how compelling the goal of trying to cure. I am therefore convinced that the right decision has to be total opposition to the deliberate creation of children as tissue donors for others. I urge noble Lords to support the amendment. I beg to move.