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Public Bodies Bill [HL]

My Lords, my noble friend Lord Warner has declared support for the Minister sitting on the Front Bench; I suspect that I might in the next few minutes give him even greater support. We have to understand that research in these areas has now gone way beyond embryology. There was a time when people were very concerned about the status of the embryo, when embryo research was relatively novel. I should like to correct a remark made by the noble Lord, Lord Walton, who very kindly referred to work on pre-implantation diagnosis. That work produced pregnancies before the establishment of the Human Fertilisation and Embryology Authority, and people like me were greatly exercised to establish regulation. In spite of what has been said in this Chamber, we were very much in favour of regulation. Since there was no government regulation, we started a voluntary licensing authority which became a model in time—obviously, a very imperfect model—for the body set up under the splendid Bill introduced by the noble and learned Lord, Lord Mackay of Clashfern. Stem cell biology covers every aspect of human disease, from cancer to brain research, from human consciousness to the replacement of organs and transplantation, and a whole range of other areas. It is really—forgive the pun—inconceivable that this could be dealt with by the Human Fertilisation and Embryology Authority properly under its present form or any future form. I would argue that with the advent of epigenetics, the recognition that now the environment in which cells are placed in culture and elsewhere is such a universal issue in medicine there has to be a much more global look at this kind of research. I feel that there is a strong case for suggesting that we have to accept that research ethics are universal and that they tend to have the same sorts of problems, whether it is patient consent, the end or beginning of life, or a whole range of other issues. In fact, the end and beginning of life have some very similar moral issues which need to be debated by ethics committees. The noble and learned Lord was right to point out that trying to look at these issues in a new form would be absolutely apposite. I for one am certainly not in favour of a free for all. I am not quite certain who in the medical profession is. I do not think that that is true. The regulation of clinical treatment has been in many examples woefully inadequate. The noble and learned Baroness, Lady Butler-Sloss, pointed out that while she was sitting on the Bench she had the most terrible case of a woman who had the wrong embryo transferred. That was done, of course, under the auspices of the Human Fertilisation and Embryology Authority. No regulatory authority, no matter how perfect or how good, can regulate against every human error. We should have a set of principles in laboratories which keep those mistakes to a minimum, and the regulation of medical practice must also enforce that. I do not think that there is any evidence from what has happened that the HFEA has done a particularly good job or a particularly bad job. In some areas it has not been very powerful. For example, many things are forbidden under regulation in this country. Patients actively seek fertility tourism in other countries where they can get, for example, donor eggs and perhaps come back pregnant. Very often clinics in this country, although it may be against regulations, refer these patients outside. Of course the HFEA, not unreasonably, is powerless to deal with that sort of problem. It is also true that the fees charged to patients are often extremely exploitative. I have no doubt that we will come back to this when we come to the pending health Bill, because this is a much bigger issue in terms of how we finance the health service. At the moment, IVF, whether it is done in the private sector or in my view in the National Health Service, is charged on the basis not of what it costs but rather of what the market will bear. That is a very big issue which we will need to discuss, because I suspect that that may apply to a lot of medical practice. It is an issue to which I am sure this House will want to return. Costing the procedure is very important. Someone mentioned follow-up: one sad thing about the opportunity in 1990 was that we did not—even though we had records of IVF pregnancies, and IVF successes and failures—make any attempt to follow up babies after this procedure for the long term. There have been many reasons why that was difficult, such as data protection. But this lost opportunity means that some of the procedures often in routine use may have unforeseen consequences in children when they are adults. We now know from David Barker’s work, for example, that babies who are born underweight and premature are much more likely at the age of 50 or 60, as the Minister knows, to suffer from heart disease, stroke, hypertension and possibly osteoporosis as well as diabetes and one or two other diseases as well. Of course, we may see more diseases which are likely to be epigenetic due to those early influences. I have to say that, although it is claimed that the HFEA gives out information to patients, six years after I retired from clinical practice running a very large IVF service, I am bombarded daily with e-mails—I have had several today—from patients who want information about IVF and do not feel that they are getting the information they should from the statutory authority. That remains a problem. The clinical regulation of non-evidence-based practices has been poor. For example, there is no evidence that the preimplantation and genetic screening of embryos designed ““to improve pregnancy rate”” works. Yet several clinics charge large fees for doing this under regulation even though there is not a base for justifying its use. That also applies to costly immune therapy, which is highly controversial. Again, this is used in women who sometimes fail to get pregnant, under licence from the HFEA. This is an example of how in fact regulation is really quite limited in clinical practice. I am really surprised that nobody in the Chamber has mentioned one important issue that is not easily settled by any form of regulation. I do not know what we do about it. In practice, the biggest problem with in vitro fertilisation is the serious consequences of multiple embryo transfer and the risk of multiple births. The problem is that if you transfer two embryos to the uterus you may in many cases have a twin pregnancy. In a few cases you may even have a triplet pregnancy because, after transfer, one of the embryos may split so you have two identical twins and one single—you have triplets. What we know and is broadly recognised and fully accepted is that any form of multiple birth is a dangerous event in pregnancy. Something like one in 23 multiple-birth babies dies and about one in 12 is handicapped. Premature birth, which is the result of this treatment under those circumstances, is a major cost to the health service. It occupies special baby units and is often a disaster to the families, who were of course insisting on having as many embryos transferred as possible. The difficulty here is partly ethical. It is interesting that, for the patient herself, those fertilised eggs are her babies and she may, not unreasonably, insist on having two of them back even though she has been advised to have a single-embryo transfer. That problem needs to be thought about. At the moment, as we have dealt with this it has not been well addressed. It is an extremely difficult issue. So I hope that my noble friend Lady Thornton does not push this measure to a Division as I would find it difficult to support the amendment under its present form.