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Human Fertilisation and Embryology Bill [HL]

moved Amendment No. 33A: 33A: Schedule 2, page 56, line 8, at end insert— ““(4) For the purposes of sub-paragraph (1)(c) and (d) ““serious”” means life-threatening or impairing severely the quality of life of a person with the disability, illness or condition.”” The noble Earl said: My Lords, I shall speak also to Amendment No. 112A. This brings us back to the definition of ““serious””. I should like to start at a slightly different point from the one that was the focus of the amendment in the name of the noble and learned Lord, Lord Lloyd. New subsections (9), (10) and (11) of Clause 14, which would amend Section 13 of the Act, focus upon pre-implantation genetic diagnosis and take us to a particular aspect of that issue which, but for these provisions, many of us might not otherwise have thought much about. They explicitly prohibit embryos being selected with a view to increasing the chance of having a child with a serious disability or medical condition. Consciously to wish such a disability or condition on a child may seem extraordinary, but there have been well documented cases where parents who are disabled in a particular way have expressed a desire to have a child with the same disability. I find that idea repellent because it ignores one of the issues central to any IVF procedure, namely, the future welfare of the child. Therefore, I wholly support a ban on that type of embryo selection. The techniques available to diagnose the presence of genetic conditions in any embryo should be used, if they are used at all, to reduce the risk of a child being born with a serious handicap and to reduce the risk of suffering. Over the years, this type of pre-implantation diagnosis has been carried out in a sensitive and responsible way by clinics on behalf of patients. It is not a technique deployed for trivial purposes. On the contrary, it is seen very much as a last resort in cases where a couple have been unable to produce a healthy child by natural means. Two problems have caused concern. One of them is the time that it sometimes takes for the HFEA to allow a procedure to go ahead. The need for the HFEA to approve a particular condition as being serious enough to warrant pre-implantation diagnosis often means a considerable delay for couples wishing to access the procedure. It is absolutely right that each case should be considered on its merits. There should be sufficient flexibility in the system to allow that to happen. At the same time, there is an argument for encouraging the HFEA to look at ways of shortening the decision-making process. For example, the BMA suggested that that could be done by having, in the first instance, a set of broad criteria included in the Act, with the scope and interpretation of those criteria fleshed out for clinics in the form of HFEA guidance. If we look at Schedule 2 in conjunction with the provisions in Clause 14, those broad criteria for pre-implantation diagnosis and screening are indeed stated. Schedule 2, in new paragraph 1ZA(1)(c), allows for an embryo-testing licence to be issued: "““in a case where there is a particular risk that any resulting child will have or develop—""a gender-related serious physical or mental disability’""a gender-related serious illness, or""any other gender-related serious medical condition,""establishing the sex of the embryo,””" The question begged by this wording, similar to that in Clause 14, is: what does the word ““serious”” mean—serious for whom? Most would immediately say, ““Serious for the child in terms of the degree of suffering or the extent to which life expectancy is curtailed as a result of the child having the condition in question””. We do not mean serious for the NHS or the parents in looking after the child or serious for the parents in having to bring up a child who may not be 100 per cent able-bodied. The seriousness of the illness or condition is surely defined, for most of us, from the point of view of the child when they are born. Therefore, we should think of setting out a broad definition of what is meant by serious in the Bill. This would potentially assist the HFEA in terms of Parliament’s intentions and it would address a second problem. At the moment, there are rare circumstances in which patients, having had their embryos tested, find that they have to choose between a poor quality embryo which has no adverse abnormality and a good quality one which does have such an abnormality. The first, if it is implanted, is unlikely to result in a pregnancy. The second is much more likely to do so. As far as possible, we should try to avoid new subsections (9), (10) and (11) being interpreted in a way that would make it impossible to take a reasonable decision in such a case. Without a broad steer on what should be understood by the word ““serious””, we might be storing unnecessary complication and delay for couples seeking treatment of this kind. There is an equally important concern in relation to so-called saviour siblings. The Joint Committee on the draft Bill recommended that the practice of selecting for saviour siblings should not be restricted to life-threatening conditions—as we have just been debating—and that ““life-threatening”” should be replaced by ““serious””. The Government accepted that recommendation. Personally, I have no problem with the change, provided that we know in broad terms what we mean by ““serious””. Again, we surely mean serious from the point of view of the child in terms of its likely future suffering or the risk to the life of the child. The whole concept of a saviour sibling is, ethically speaking, a difficult one. Some people find it impossible to countenance at all: others will do so only in a narrow range of cases. That is why, if we are going to extend the legal grounds on which tissue matching is to be permitted for the creation of saviour siblings and avoid the possibility that the process will be invoked for reasons that are less than compelling, we need to spell out in clear terms how we want the statute to be interpreted. The seriousness of the condition in this context is surely about the probability that it will end a person's life prematurely or cause the person a degree of suffering such as to impair their quality of life to a severe extent. Some might argue that there are serious illnesses and conditions that fall into neither of those categories: the noble and learned Lord, Lord Lloyd, hinted at that very point earlier on. It is a perfectly respectable line to adopt. But the very fact that there is room for discussion on that point makes it all the more important for us to make sure that the terms in the Bill are defined in ways that are not overly prescriptive but, at the same time, we should leave all concerned in no doubt about what was intended. I believe that the definition that I have proposed is what the Joint Committee intended and I hope very much that the Minister will look at the amendments positively. I beg to move.