Select Committee on Science and Technology Minutes of Evidence

Examination of Witnesses (Questions 1046 - 1059)



  Q1046  Chairman: Thank you very much, Professor Peckham, Professor Edwards and Professor Leese for coming to help us with our inquiry. No doubt you have been hearing and reading of some of the events that have been taking place and some of the issues we are trying to address. You know that we feel it is time to revisit some of these questions and I hope you will agree, and that is why I am going to start opening the questions up by saying that if we look forward 25 years, and let us assume we are all going to be here then, what do you think are going to be the capabilities and concerns of assisted reproduction practitioners? What are they going to be worried about, and concerned about?

  Professor Edwards: Your question is very timely, Chairman. We have just had a meeting at the Royal Society where one of your members was present, and many people said what they saw coming. They see coming much wider use of pre implantation genetic diagnosis, a method which runs into great problems with the disabled, and also gene injections. Now, what we call pre implantation genetic diagnosis, PGD for short, is now exploding, since the genome project came. Literally every gene can be analysed, I suppose, in the early embryos; I do not know any reason why it should not, so suddenly we can look for many genes that we did not even know existed. Already, it must be a hundred diseases that are being treated. In Cyprus, for example, the government has joined in a trial of B-thalassaemia, because Verlinsky and Kuliev, who are from Chicago, signed a deal with them that they would score all the embryos of people carrying the gene and transfer non embryos in an attempt to rid Cyprus of this terrible disease. So far twenty babies have been born; none have been affected. It will continue, and I think they will clear Cyprus, ie Greek Cyprus, of this disorder. Also, you could never do late on-set diseases—cancers, Alzheimers. You are entering difficult areas here because if you diagnose the embryo and define it as Alzheimers, then the parents know they have it which is not a fact they wanted to hear. In fact, many of them would rather not know. They just say "transfer the right embryo", so do not tell them anything. So this is where we are going.

  Q1047  Chairman: So there is a flurry of information coming at us. Do you think we are ready for it? Do you think we are set for it, or is the science moving too fast for the changes, the regulations?

  Professor Edwards: I have faced this question all my career—

  Q1048  Chairman: I know that.

  Professor Edwards:—and every step we had to come down here to Parliament or go on television or do what we could, and at times people were very hostile to us. We came through that. Even James Watson, the DNA pioneer, is now satisfied that what we did was correct and ethical, and he did not at one time think that. So it took about twenty years to get the idea over, and I think the happy event of the birth of Louise Brown was very decisive in this matter. I was speaking to Leon Kass who is adviser to President Bush, and he was very anti us but when Louise Brown was born he was totally converted, he said, in a meeting. They even now have two IVF babies so he is more than converted. I think the same with PGD is happening now, because these diseases are terrible diseases. If you look at some cancers, you see the pedigree is riddled with deaths—not one cancer but several. If you have a tumour supressor gene which has mutated the lid is off for cancers so that has made a terrific impact on many families now, and what can be done on the simple genes for cancer is being done. So I think it will swing round to us, and in the meeting that we had at the Royal Society, one or two philosophers were saying that if these stem cells are used and people get better, or maybe get better than they were before—it depends what kinds of cells you put in, the parents who have not done it may find their children are handicapped in comparison, not handicapped in the sense we take it but are running behind those who have gene technology. So when you say 25 years, that is a long time in science—

  Q1049  Chairman: Should I have said five?

  Professor Edwards: What I am saying may be starting in five years I would say, not 25, so I think we are entering a different world and one philosopher said that the major future for human kind was not space research but examining ourselves and looking at ourselves, and making this a better world to live in.

  Q1050  Chairman: I think we would all agree with that but my question really is are we up for it? Is the regulation ready for it? Are the powers that be sold on these ideas that you are putting forward and are aware of this, and are they going to do it or are we just slow?

  Professor Edwards: I think people are aware of it, and I think they will become more and more aware of it. Public awareness runs ten years behind the science, I would say. To give an example IVF took ten years and now it is everywhere, so I would say that whereas PGD is coming very fast when we hear about designer babies and children and things, it is coming very quickly indeed. It is getting an excellent press, and patients are queuing up for their treatment, so I think awareness is coming.

  Q1051  Chairman: Before I ask your colleagues to come in too, can you just tell me about the issue of choice in this arena? Do you think there is enough choice available for individuals to make that decision?

  Professor Edwards: I am sorry to say I am shocked at the support given to patients in the United Kingdom compared with my colleagues in Europe.

  Q1052  Chairman: Could you amplify that, please?

  Professor Edwards: We have just reluctantly given one free cycle of IVF. Belgium gives six; Germany gave three but it is now bankrupt so it has gone down to one; France gives four; Sweden, Finland give a lot—I do not know how many. We and the United States are terrible. Our scores are far lower. In Finland, for example, I think now well over 3% of all births are IVF; Patrick Steptoe and I thought it would be 8%; it is heading that way. If you add PGD on it will be more still, and then when you come to stem cells this afternoon there will be more still there. I think we have not treated our patients very well.

  Q1053  Chairman: I am sure we will take that up. Professor Leese, Professor Peckham, would you like to amplify that? Do you disagree?

  Professor Peckham: I would say one of the prime things would be to reassure the public that these technologies or procedures are safe and we need to have systems up and running to be able to address that and this certainly came out of the recent MRC working group. The public need to know that technologies are safe and are properly evaluated because unless you know that—

  Q1054  Chairman: Are you suggesting they do not at the minute?

  Professor Peckham: I am saying we have not got the systems in place to look at the consequences both immediate and long term.

  Q1055  Chairman: It is not being done, is that right?

  Professor Peckham: We are moving towards that but at the moment that is not done and it has not been possible. With the new information systems that are becoming available, data linkage systems are going to become possible. We have to address the difficulties, the ethical issues and the governance around some of these factors when we are thinking about monitoring long term, what the outcomes are of some of these new technologies.

  Q1056  Chairman: So you share Professor Edwards' frustrations?

  Professor Peckham: Somewhat yes, because unless we can reassure people this will not be possible.

  Professor Leese: I agree with what has been said. I share the frustration from the point of view of the equity issue. PGD is very expensive and I agree as well that the major implication 25 years ahead for our field is the new genetics, the human genome project, etc, which has arrived at the early human embryo. Until three or four years ago we could not do all the genetics we can now but now we can amplify single human embryos. What I find very difficult, and I just do not know the answer, is whether PGD will extend to fertile couples who have a predisposition for disease in later life, and the Biobank will come in here providing information on predispositions, so it will all come together. I think for the infertile it is obviously less problematic; they have a known susceptibility to a genetic disorder, PGD. If you have the chance of one in later life, are fertile couples going to go through this quite traumatic procedure? I really do not know. On the regulation side, I am quite an optimist here. I was on the HFEA and, by and large, I think it has done a very good job and I do not see why we cannot put in appropriate systems to regulate in this area. It is back to you people, ultimately; I have always been quite clear about that. The buck stops with Parliament. Arguably perhaps a few more things might have been put to you but the HFEA is a body that has performed well. I think we should see this whole field as an opportunity not a threat. It can be managed; the opportunity is there. The equity issues, the affordability, is a real problem but I am quite an optimist for the future here.

  Q1057  Dr Iddon: I want to pursue the tension that we believe exists between the HFEA and research, and you, in a way, Professor Leese, answered my first question but I would like the views of our other two witnesses. Do you think the development of IVF and PGD, which I understand predated the Act, would have been possible had the Act been in place at the time, and of course we have one of the pioneers here today so perhaps we should ask you, Professor Edwards.

  Professor Edwards: That is an incredibly difficult question. When IVF started there were hardly any ethical committees in hospital. It was a sort of American invention that was entering our practice, and when I started working with Patrick Steptoe we had to strengthen the ethical committee. It was doing nothing. We had to make it much stronger, and we had to tell someone else to appoint the people otherwise we were biasing it towards ourselves. I think in those days you talked to your colleagues and your friends and your doctors and you decided things were safe and you had to make a lot of decisions by yourself, and this is what we had to do, but at every step we took immense advice from everybody. For example, from Chang who was working in the States, who had large problems of IVF in mice; from epidemiologists and terotologists who all told me to go ahead and that what I was doing was safe. So I never had any problem on the safety issue. I think in committees today, if you gave them the same evidence, they may just agree with me. If we could imagine they were now re-invented I think they probably would agree that it was safe, or that it would be safe to go ahead.

  Professor Leese: I agree with that quite strongly. I served for two years as chair of the working group on the HFEA that is now called something else that dealt with research applications, and I have been asked, "If you had received the application from Professor Edwards and Steptoe in the mid-70s 'Can we go ahead and attempt to produce a baby", I think the answer would have been "yes", with cautions thrown in, etc, because there was a very strong evidence base going back 60 or 70 years. The first embryo transfer was carried out around 1900. There had been a lot of work on mouse, rabbit, primate models. It had been shown that you could create human embryos in a dish; to the best of our knowledge it was time to proceed with caution and do it, so I think then the evidence base is pretty strong. For some of the recent things the science has been moving fast. We did our best on the working group; we took the best evidence we could, and maybe later on I could give you specific examples if you like, but there is general recognition the evidence base is not as robust as it should be. The field has been largely techniques driven, I would say; things like intra cytoplasmic sperm injection, PGD itself, biopsy, cryopreservation, etc, largely about techniques, and the underlying science has to catch up, and we were struggling against the lack of good evidence, of safety and efficacy when I was a member of that Committee, and I think the implications of the report that Professor Peckham has produced will strengthen the evidence base immeasurably, and that is why I support it. But I think in the original case the evidence was good enough to proceed.

  Q1058  Dr Iddon: Perhaps we should have the view of Professor Peckham?

  Professor Peckham: I would say we need to strengthen what is in place and I think the HFEA have done a very good job, but they are not a research organisation. We need to make sure that the evaluation of the new technologies is underpinned by scientific evidence and that we can build on that and feed back into the loop and identify areas of research that need to be addressed and pursued, and I think this is happening in other areas. It is not just assisted reproduction. Any area that involves interventions, technologies or drugs in pregnancy you need to address and look at the scientific overall evaluation of what you are doing. Assisted technology has become increasingly complex, increasingly difficult, and I think it needs a much stronger structure to underpin it and build on what is already there, which I think has been very good.

  Q1059  Chairman: Have the social values that set the 1990 Act changed as well as the science?

  Professor Peckham: Yes, but I think there are clear needs for change, because many of the issues addressed such as the long-term consequences, on the health of the child and the mother, are not possible to pursue because the legislation is such that that information cannot be passed across. Therefore the database, which is an incredibly rich, quite unique database, is not being maximised and used to address new questions which perhaps were not asked in the same way previously. But there is huge opportunity to build on and strengthen rather than say that what is done now is not good.

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