Select Committee on Science and Technology Minutes of Evidence

Examination of Witnesses (Questions 1080 - 1099)



  Q1080  Mr McWalter: On ethical oversight, Professor Peckham, your report mentions the development of a "balanced ethics and governance framework" to regulate data collection and follow-up studies. Who should do this?

  Professor Peckham: I think it has to be independent. I think we have many examples in other areas in science now, whether it is the newborn screening or whether it is Biobank where an independent approach has been shown to be very successful, particularly if it is done with public consultation. When we are talking about issues like monitoring children and following up children who have been conceived by different methods in order to ensure safety, and I think that is a good procedure, I think that is vigilant and something we are doing in other areas, you have to think about the public concerns. You have to think around the issues of confidentiality, the issues of consent, the issues of what you are doing and you have to bring on the public. You have to have the public behind you or these things cannot work, and I think it needs an independent body to look at what is going on, and that can be very successful.

  Q1081  Mr McWalter: This Committee has just come back from talking at Vatican City to some of the people there, and one of the things they were very interested in was whether using techniques like PGD you might get over the long-term a contraction in the gene pool so that removing something that looks as if it has highly negative, like, say, a gene for Alzheimers or whatever, may in the end give you a gene pool whose members who participate in that then have other vulnerabilities that were not previously identified. Would you think that is a danger? Do you think that is something that should be part of the consideration for such an ethics committee?

  Professor Peckham: I think one should always be looking at the effects which may be immediate or even more long term; that is appropriate for many different areas of medicine. We know that the intrauterine environment is very important and that it has implications for the child and implications much further than the child—for the adult—and I think we have to be very aware of the long-term effects as well as the immediate effects of what we are doing, and that is a precautionary approach and something we need to do, and we have to balance the concerns of the individual and confidentiality with the benefits to society as a whole, and I think that debate is something that we have not addressed sufficiently and we need to address, because we have to think of the public good versus the benefit to the individual, particularly when you are not harming an individual, you are just merely wanting individuals to work together to produce something so that you can monitor what you are doing. So I think it is quite complex; it is not easy; it is not something you can just set up; you have to think it through and you have to do it properly, particularly with the ability that there will be soon, and this is certainly something Biobank is addressing, which is the linking with other data sets and linking with other health information within the NHS. That can tell you a lot. It can tell you if something is going seriously wrong. It might not be subtle things but if you can link databases and relate the information back to the individual technologies you are applying, it can alert you if there is anything you need to investigate further. So I think there is huge progress in data linkage that we are just beginning to apply in other areas that would be appropriate for the assisted reproductive technologies.

  Professor Edwards: Answering that question from the point of view of a geneticist, if we use PGD—and we are talking about five years—for disease, I should be delighted if we get a decline in the frequency of genetic disorders. I think that would be wonderful for the human race. That is our target, so I am not the slightest worried on that point. I cannot understand what the questioner was saying to you. But if we can go later, you have to think that down the line already we are starting to look at multiple gene situations—not single gene but multiple genes—and when you enter that area you are talking about the more human characteristics of the embryo, if I can put it that way. Even though you may be putting new genes in, I would have thought the chance of risking any change in gene frequencies in a population of 60 million people would be incredibly minute. I would strongly recommend you consult a population geneticist, but I think his answer would be "Not a chance", that the effect would be very minor.

  Q1082  Mr McWalter: Are you suggesting we cannot eliminate Huntington's Chorea?

  Professor Edwards: We can probably eliminate any of these genes if we are prepared to pay for the screening. When people say PGD is expensive, I always say what is the price of a disabled baby who is born. What is the cost for anyone to bear? That is a terrible price for anybody to bear, and the financial cost is immense. A PGD by comparison is a very small sum of money. On PGD, I fully agree, we have to do it responsibly, but if done responsibly then I think it is a very new and challenging thing for us to accept.

  Q1083  Mr McWalter: Professor Leese, do you have any observations about the performance of ethics committees in the private sector?

  Professor Leese: I do not quite understand your question. They are always properly constituted as far as I know, and I used to be an HFEA inspector. They would have strong lay representation and we would always check on that to make sure the person responsible was not a member or left for items concerning his clinic. No, I do not have a view on that. I am going really back to when I used to chair inspections and all the paperwork and the ethics dimension. I always felt they were of course immensely valuable for difficult cases. If the clinic had a difficult case we would put it to the ethics committee, but I cannot recall anything that would distinguish ethics committees and private clinics from NHS Committees really.

  Q1084  Mr McWalter: So people do not just appoint their pals? "So-and-so is worthy", or "I met Jo Bloggs down the lodge", that kind of thing?

  Professor Leese: There is always an element of the great and the good, as it were, but how you resolve that one I just do not know. That is one I would put back to you in every walk of life. The expert versus the lay, and how you balance the two.

  Q1085  Mr McWalter: So they might have a collective blindness?

  Professor Leese: I think they are doing their best, really.

  Q1086  Chairman: Do you think we can regulate private clinics at all, or do they just tell us to run away? What about the regulation of them? How do you feel about that in comparison with the regulations that you feel are strongly enacted through the system we have in the public sector.

  Professor Leese: In the private clinics?

  Q1087  Chairman: Yes.

  Professor Leese: I am struggling to find a problem here, I really am. There is obviously something in your mind but I would have—

  Q1088  Chairman: We are cynical, suspicious people. We read the newspapers and we see things going wrong and we find that people who are privatised tend to—

  Professor Leese: Perhaps they were not the clinics I inspected but we would always look at the constitution of the ethics committee. It was one of the questions. "Do you have a properly formulated ethics committee?" We would always look at it and see who was on it. I cannot recall the problem, anyway.

  Q1089  Mr Key: I think the evidence so far is that the HFEA should not become a research organisation, if I understand you correctly, but this does bring us back to the question of clinical data bases. Under the Act, Section 31, the HFEA has to log information under certain circumstances and the recent MRC HFEA working group has suggested that there should be a new monitoring framework in place to collect and collate more comprehensive information than is currently done. Would that be a good idea, if there is to be no research function? What is the point? Why do we not just ask the HFEA to record very basic information like recording gametes and embryo donations?

  Professor Edwards: I would find no problem in people following up our research at regular intervals, coming and checking, making sure it was safe rather than it was ethical, if you see the difference, which I think is what you are saying. I would have no problem with that at all. In fact, such a body would be welcome. First of all, they may find things we had not thought of which is always wonderful to us but it would give us the chance to show what we are doing, and this body would show that we are doing it properly. That is what we want—to make sure that people see what we are doing is being done perfectly correctly. And, by the way, I think IVF is being practised correctly. There are one or two renegades, I am sorry to say, but on the whole it is practised correctly. Does that answer your question, sir?

  Q1090  Mr Key: Partly, but I wonder if our other witnesses have a view particularly on this question of clinical databases and whether there is duplication here, and what would be the point of the HFEA enlarging a database if it was not for research?

  Professor Edwards: When Louise Brown was born, and we opened the Oldham General Hospital we started getting a lot of data, we sent it to the Medical Research Council and they wanted to follow up all the babies for us. After a short time they wrote back saying "It is too expensive; we will do chromosomes only". After three months they said "We do not want to do chromosomes either", so our first database which could have been established in the United Kingdom in 1982 was never established, so I think the MRC must get its act right on this. If it is going to come in it must be seen as a duty of the MRC. At the moment it is a place for research applications. I have not applied for ten years, by the way, and it might have changed in ten years, but when I was around it was a place for research applications and not for checking research. I do not know if it is the right body.

  Professor Peckham: I think the information database that the HFEA has is a unique information base but it has been set up to address different questions. It has a lot of information on treatment cycles, conceptions, and minimal information on outcome. What was suggested in the MRC report was that you might want to look at certain questions as demanding more details of the technology that was used in trying to tease out that in relation to the effect on the health of the child, so I do not think you would want more information; you might want selected but fairly discrete information. So you are not suggesting two databases; you are suggesting there needs to be very close collaboration to ensure that the information you would require for that purpose, which is different, is available on the database, so it is complementary. You do not want to duplicate things; you want to work together, and I think one can think of many examples where that has taken place. I think the monitoring falls in a way between good clinical audit and research but there is no doubt that such information provides a very valuable database from which to do more in-depth research using more detailed approaches which would be more appropriate for bodies like the MRC, but at least you have a sampling frame and you know who you are investigating and you can look at issues about bias. It is difficult to follow up and we know at the moment we have not got that in place; it is not easy. So it falls between two, that monitoring process. It is good clinical practice, and it is audit.

  Q1091  Mr Key: That is helpful. Can I move on to something really fundamental. I want to ask you how you define an embryo and a gamete. When Parliament decided all those years ago in the Act to define an embryo and a gamete, they used terminology which now appears to be inadequate, and the HFEA in its evidence has suggested that we need a redefinition of embryos and gametes, and the Canadians, of course, have recently done that in their Act which in March 2004 received Royal Assent, so who would like to start by advising us how you would define an embryo?

  Professor Edwards: I think it matters for whom you are defining it.

  Q1092  Mr Key: For us for the time being

  Professor Edwards: For lawyers, you probably have to watch every step you take

  Q1093  Mr Key: Forgive me for interrupting, professor. I am asking you to advise us as representatives of our constituents wrestling with day-to-day problems on the one hand listening to you and on the other hand reading the Daily Mail. How would you define an embryo to us?

  Professor Edwards: Let me give you one example where there is a problem. You do not need fertilisation to establish an embryo; it can set off by itself and we call that parthenogenesis and we call that a parthenogenetic embryo. We do not have a problem with that. If somebody clones it, instead of fertilising it, they put a nucleus in it, we call that a nuclear transfer embryo, NT for short, and you will hear more about that in your next meeting I would think. That is how we see it. I would say that most scientists I know would be very unwilling to define too hard because we understand what we are doing and I can understand what all my colleagues are doing in the advance of research. I am not trying to be unhelpful.

  Q1094  Mr Key: Do any of our other witnesses disagree with what the Professor has just said?

  Professor Leese: It is very difficult to come up with a definition on the spot. It really is. It is the product of a union of two gametes for a start, an egg and a sperm. The whole thing is a continuum of course and, with any developmental process, it is where you begin and where you end but, for starters, it is the union of two gametes.

  Q1095  Mr Key: How do you define a gamete?

  Professor Leese: In operational terms, it is an egg and a sperm.

  Q1096  Mr McWalter: It is not though, is it, because you have artificial gametes?

  Professor Edwards: One of my ambitions is to take a sample of blood and take a white cell in place of a gamete for patients who do not have their own gametes. That would be wonderful and, by the way, that would involve cloning and that is why I do not agree with abandoning cloning either. I think you have to leave your mind open on all these questions. You never know where you are going to be next week! We may find that cloning helps infertile patients. I think the answer is to make your own definition. This is a very hard question off the cuff, you know.

  Q1097  Mr Key: Good! That means we are doing our job!

  Professor Edwards: Let us bring a group of scientists in, let them argue for a couple of weeks and then see what they say.

  Q1098  Chairman: No chance!

  Professor Leese: I see where you are coming from now. I would say that physiologically it is normally the union of two gametes. However, it may also be formed in the following ways and you could have somatic cell nuclear transfer and you could list them if you wish. I am not sure how useful that would be.

  Q1099  Chairman: Do we need a new word? Do we need new language?

  Professor Leese: No, I do not think so.

  Chairman: You understand what an embryo is.

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