Human Fertilisation and Embryology Bill [Lords]

Amendment No. 31 is important, but I take this opportunity to speak to the other group of amendments in my name, and to deal with the issue of saviour siblings, which is clearly one that will dominate the debate. Embryo selection can be negative or positive. Negative embryo selection, which has been lawful under the Human Fertilisation and Embryology Act 1990, means that if a family suffers from an inheritable disease, they are able—even if otherwise fertile—to have in vitro fertilisation. If it is successful, embryos can be gathered and tested at an early stage, while outside the woman, by the removal of one cell. That has not been found to damage the embryo and the testing of the cell enables clinicians to identify whether each embryo is affected by the condition. If an embryo is affected, the couple undergoing treatment can avoid selecting that embryo for implantation and use one of the unaffected embryos. Since 1990, the HFEA has licensed such negative selection on a number of occasions and families have benefited by avoiding inheritable disease, particularly when they already have a child significantly affected by the disease. That is a reasonable thing to do and I absolutely reject the suggestion that helping a family to avoid having a child with a serious disease is in any way discriminatory against the disabled. There is a complete difference between seeking to alleviate or avoid suffering by such techniques and discriminating against disabled or sick human beings after they are born. Indeed, many of the doctors who work so hard to provide pre-implantation genetic diagnosis also work hard both to provide in utero surgery to avoid or ameliorate congenital defects and to look after children born with serious diseases. Although I realise that views on the issue run strongly, I hope that the allegation of discrimination is not levelled against clinicians, parents and those of us who think that PGD is legitimate to help people to avoid having a child with a forecast serious genetic disorder. Such an allegation borders on the offensive. My second point is that when taking a cell to check whether a child is affected by a disease it is also possible to carry out other tests on the cell—for example, tissue-typing. I shall briefly describe two cases. The first involves the Hashmi family whose child was very sick with thallassemia and needed a transplant, but none was available from the bone marrow or cord banks, as is often the case for families with certain genotypes—particularly, but not exclusively, those from ethnic minorities. The Hashmis needed to check whether their next child would have the same disease, and whether they could select an embryo who did not have it. They also wanted to see whether they could get a tissue match. The HFEA said, after serious consideration, that that was a legitimate thing to do, and the courts upheld that decision as lawful under the 1990 Act. I understand that the Hashmis were unfortunately not successful in conceiving. The next case that came along was that of the Whitakers, a family from Oxfordshire. They had a child who was seriously ill with diamond blackfan anaemia, who was kept alive by weekly transfusions and nightly treatments of an infusion of a drug. It was not an inherited disease but a sporadic mutation, so when they had another child—they wanted to have another child anyway—they did not need to test the embryo for the genetic disease, but they did wish to use a tissue-typing technique. They were fertile but they wanted to have IVF so that they could select an embryo that was a tissue match, in order that a wanted, loved child could provide a cord blood transplant for the afflicted older sibling. The family were denied that opportunity by the HFEA, which disagreed with its own ethics committee. It later changed its mind, but in the interim the Whitakers went to Chicago for the treatment. It was successful, and they had another child, who was healthy. That child's cord blood was used in a transplant for the older sibling. The procedure was successful, and the sibling was cured. As a result of the intervention, instead of neither of the two children being alive and healthy, they were both alive and healthy. That makes the case more eloquently than any speech or policy document could. What are the problems? Well, I do not think that there are any. I do not accept the allegation that there will be a burden on the saviour sibling. There is no evidence of that. There is evidence that if the intervention does not take place the sibling will suffer bereavement, because the young child will be born into a family who have a seriously diseased child who may die. It would be a benefit if that could be avoided. As I said on Second Reading, even if we could forecast circumstances in which there would be a burden, those potential circumstances have to be balanced against the certainty of harm if the family is not allowed to have a second child in the way that I have described. We do not know whether the removal of a cell creates long-term harm to the embryo; it is fair to say that the technology is relatively new. However we do know that so far—thousands of children have been born following pre-implantation genetic diagnosis—there does not appear to be any harm, although it is important to keep observing. We do know that the birth of many sick children has been avoided, and healthy ones have been born instead, and that a handful of saviour siblings have been permitted. The HFEA has made it clear that it will not allow the procedure if there is an alternative that does not involve the destruction of embryos, so if there is a bone marrow match or a cord blood match, it is likely that that will be pursued first, because such a transplant is clearly less onerous for the parents than IVF, which is burdensome, and pregnancy.