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Human Fertilisation and Embryology Bill [HL]

The screening and selection of embryos for the purpose of providing stem cells to treat a seriously ill child—so-called saviour siblings—is one of the most emotive issues in this controversial field, as we have learnt today. At the outset I should say to the noble Lord, Lord Alton, that I was deeply disturbed, as I am sure were other noble Lords, to hear the views expressed in the New Scientist in relation to saviour siblings and organ donations. The HFEA currently licenses on a case-by-case basis the screening of embryos where the intention is that the resulting baby’s umbilical cord stem cells or bone marrow stem cells will be used to treat an existing sibling who has a life-threatening or serious illness. The Bill clarifies the scope of the HFEA to make such decisions. As the noble and right reverend Lord, Lord Harries, and the noble Baroness, Lady Deech, informed us, these discussions are not made in a moral vacuum. Amendment No. 32 specifically removes the tissue- typing purpose so that it would not be possible to license embryo testing to find out the tissue type of an embryo. When embryo testing was first introduced there were concerns that removing cells from the embryo for testing would have an effect on the health of any resulting children. Although children born as a result of embryo testing are not yet adults, from the thousands of children born following embryo testing there is no such evidence of harm. In contrast, the benefits offered by tissue typing are considerable. The Bill allows potentially life-saving treatments to be offered for children who are affected by serious medical conditions. In practice, tissue typing is only ever considered when all other options are exhausted—in other words, when there are no match donors on the register or within the family. The HFEA has licensed tissue typing for three conditions. If we were to accept the amendment we would be taking a backward step. As the noble Earl said, we are not aware of any specific risk as a result of embryo biopsy, particularly when balanced against the benefit of treating serious medical conditions. For the sake of children where this treatment is their only hope, we do not think the amendment is appropriate. Amendment No. 32A was tabled by the noble Lord, Lord Alton. The Bill states that the sibling must suffer from a ““serious”” condition; the amendment seeks to change this to ““life-threatening””. The result would be that, to license embryo testing to discover tissue type, the HFEA would have to be satisfied that the condition to be treated in the sibling was life-threatening. As we have heard, the pre-legislative scrutiny committee recommended that the Bill should not limit to ““life-threatening”” those conditions that could be licensed by the HFEA, but should also include ““serious”” conditions. This word was inserted in the Bill—and, indeed, replaced ““life-threatening”” in the draft Bill—at the recommendation of the pre-legislative scrutiny committee. I am grateful to the noble Lord, Lord Jenkin, for explaining why the committee made its recommendation, as did the noble and learned Lord, Lord Mackay. I hear the views expressed by the noble and learned Lord, Lord Lloyd of Berwick, and the noble Lord, Lord Winston. This is clearly a matter that we should explore further—I do not know whether in discussions before Report or on Report. Amendment No. 33, tabled by the noble Lord, Lord Alton, seeks to add ““effectively”” to the tissue-typing provision. The result would be that it would only be possible to carry out embryo testing for the purpose of creating an embryo from which cells could be used in the treatment of a sick sibling if the treatment were effective. From a legal perspective, inserting ““effectively”” introduces uncertainty. As with many medical treatments, there is no guarantee that it will work. Also, what would effective treatment mean? Would it only mean where the child would be permanently cured of the condition? What if the treatment could extend the life of a sick child for a year or two, or 10? We are content that the Bill does not allow the creation of embryos where there is no chance that a treatment could be offered to a sick sibling, and that this is sufficient. Amendments Nos. 34 and 35 would limit the circumstances when embryo testing for tissue typing could be carried out—to only allow it when the older sibling could be treated with cord blood in Amendment No. 34, and with bone marrow or cord blood in Amendment No. 35. Clearly there is much more that we should do to store cord blood, and we welcome the new cord blood bank. The Human Tissue Authority oversees transplants of bone marrow for children. It and an independent assessor would have to be satisfied that the child’s best interests had been properly considered and that the Human Tissue Authority’s codes of practice had been properly implemented. The Government decided on balance that the creation of embryos where the intention was to collect bone marrow for the treatment of a sick sibling was appropriate, subject to these safeguards. Concerns have been expressed about the donation of organs such as kidneys by children born following treatment. Although strictly speaking it could be possible under the provision to test an embryo for this purpose, it is not in any way the intention behind including the words ““or other tissue””. I shall return to this issue shortly. The role of the HFEA in regulating tissue typing is limited to the creation and testing of an embryo. However, there are further regulatory controls imposed by the Human Tissue Authority, which must approve such transplants. The HTA’s code of practice advises that before the removal of a solid organ from a child it is good practice for court approval to be obtained, as the noble Baroness, Lady Deech, explained. In practice, since the HTA took on responsibility for approving organ donations from children in September 2006, it has yet to approve a single case. The Bill has no impact on the Human Tissue Act or the powers of the Human Tissue Authority. It addresses the grounds on which embryos can be selected, not the subsequent controls on interventions on the child that result. I note what the noble and learned Lord, Lord Mackay, said earlier about the scope of the Bill. We are content that, for the moment, amendments relating to the Human Tissue Authority are outwith the Bill. However, he and others may wish to seek clarification from the House authorities. If we accepted these amendments, the HFEA would not be able to license embryo testing where the intention was to use cells of the umbilical cord or other non-invasively obtained tissue that could be used in the treatment of a sick child. Amendment No. 35 seeks to introduce the possibility of tissue typing being carried out where the intention is to use this tissue to treat a parent. To date, the HFEA has undertaken a fine balancing act in making these assessments when deciding whether to license embryo screening and selection to create a saviour sibling. I am not convinced that enabling a parent to create a child for the purpose of providing the parent with treatment for a life-threatening condition maintains that delicate balance. The Bill introduces a regulation-making power to amend the purposes for which embryo testing can be carried out. Amendment No. 39 would restrict that power so that it could not be used in relation to tissue typing except to restrict the circumstances for which it could be carried out. As the regulation-making power is subject to the affirmative procedure, both Houses of Parliament would have the opportunity to debate and approve any regulations that were passed. To ensure that the Bill is flexible, and in light of the parliamentary oversight afforded by affirmative regulations, we do not feel that the amendment is appropriate. Amendment No. 40 inserts a new paragraph that requires the authority to be satisfied, before licensing tissue typing, that other sources of tissue or therapy available have been thoroughly considered and rejected on reasonable medical grounds. People would not choose to do this if there was another option, as the right reverend Prelate explained. The process involves IVF to create the embryos for testing. Assuming an embryo had the correct tissue type, there is still a significant chance that that embryo would not result in a pregnancy. Although people seeking to use IVF for the purpose of creating a saviour sibling would not necessarily be infertile, the chance of pregnancy is still only likely to be around the 30 per cent mark. The HFEA produces guidance in the form of a code of practice. For tissue typing, it includes a list of factors to consider, including the availability of alternative sources of tissue or therapy, now and in the future. The authority already takes into account the factors proposed by the amendment. Because of the HFEA’s guidance and the fact that it is extremely unlikely that someone would choose to create a saviour sibling where there was any other option, we think that the provision provided by the amendment is unnecessary. Amendment No. 41 would prohibit the use of bone marrow and organs from a saviour sibling and make an offence of removing organs from a child born following tissue typing. With the regulatory protection and the very remote chance of people creating embryos for the purpose of removing organs, and to allow flexibility for the future, we do not consider the amendment to be necessary. It would also prohibit the use of bone marrow, which would not be desirable because that would prevent children being able to be treated with bone marrow cells when their life could be saved by such treatment, which generally causes no lasting harm to the donors. The noble Lord, Lord Alton, asked what assessment had been made of the psychological impact of being a tissue-type child. In its code of practice the HFEA requires consideration of the long-term emotional and psychological implications for any child who may be born. I will write further to the noble Lord. I acknowledge and understand the concerns that have been raised about the use of embryo-testing technology for the purposes of creating saviour siblings. The Bill allows the treatment of sick children where there really are no alternatives. We think, on balance, that this is appropriate for the majority of the discussions we have had today about bone marrow. However, I have listened carefully to all the concerns raised about the potential for the removal of organs. I feel rather uneasy about that, and I am certainly prepared to take that specific issue back and consider it further. There are perhaps other ways of expressing these issues; for example, ““regenerative”” may be the way forward. I am not sure that is something we need to discuss, but the Government are prepared to look at the issue of the donation of organs from saviour siblings. With that, I trust that the noble Lord will feel able to withdraw his amendment.