Select Committee on Science and Technology Minutes of Evidence

Examination of Witnesses (Questions 208-219)



  Q208 Chairman: We welcome our second panel. If I could start by asking each of you, in no longer than a minute, to say who you are and which organisation you represent and what is your area of expertise?

  Mr Denegri: My name is Simon Denegri. I am actually not a doctor. I am Chief Executive of the Association of Medical Research Charities, which represents 112 charities funding research in the UK, that includes the four largest funders in the United Kingdom plus many organisations which are also patient organisations.

  Professor Gillon: I do not represent any organisation. I have been asked to come, so I have come. I happen to be Emeritus Professor of Medical Ethics at Imperial College, London, and I am Chairman of the Institute of Medical Ethics. I used to be Editor of the Journal of Medical Ethics for some 20 years. I am partly a doctor and partly a philosopher.

  Q209  Chairman: Thank you very much indeed. Can I ask you both, if we may start with you, Simon, why do you support the creation of human-animal chimeras or hybrids, or whatever you would like to call these new entities? What is the basis of your support, and could you, perhaps, in answering, indicate how many of the charities that you represent are also supportive of this particular line of research?

  Mr Denegri: Yes, I would be very happy to do that, and thank you for inviting us and we welcome this inquiry. In terms of current activity by medical research charities in the UK, there are about 20 of my members currently funding some sort of stem cell research in this country to the tune of about £9 million. That excludes the Wellcome Trust funding, which has been reported to you separately in other written evidence. In our submission to you we did mention that we had gone back to our membership to see and to assess the level of interest in this particular line of research and we have heard back from approximately eight charities which would be interested in pursuing this line of work and funding this line of work. They cover a range of conditions, Parkinson's, motor neurone disease, Alzheimer's disease, cystic fibrosis, heart conditions, so there is a broad range of conditions represented there, representing many millions of people. What I hear back from my members, in terms of the viability of the research, although we do not yet know whether it is viable, what they would say is that, against the background where we have a shortage of human eggs, this research is potentially valuable in, first, helping us to identify underlying causes; secondly, to understand disease mechanisms and, thirdly, as a potential route much further along the way to identifying possible treatments. They see it as a significant potential for eventually helping people who are suffering from one of those conditions I have mentioned.

  Q210  Chairman: Are you just buying into the hype?

  Mr Denegri: No. I think what my members will tell you is that they are suffering from that kind of shortage in human eggs and it provides a viable route forward for getting round that problem.

  Professor Gillon: I am not a scientist in this respect, I am a doctor, but it seems to me that there is quite enough prima facie evidence of the sorts of benefits from this research to go along with the notion that we should do it, unless there are strong ethical reasons against it. I do not know if you are interested but it seems to me that there are some principles which one can use to try to assess these sorts of issues, and this one is the principle of beneficence, of doing good for others. There is another principle, which is you should not harm others, and obviously these principles can conflict. There is a third principle, that you should respect people's autonomy, insofar as that respect is equal for all the people whose autonomy will be affected; and there is a fourth principle of justice. It seems to me, that this is quite a useful framework for assessing moral issues in general, not just in medicine but all over the place. Combine that with a concern about the scope of application of those principles, what do they actually apply to, and this is very relevant in the context of embryos, and that is where the big division about the status of the embryo comes up. Then, finally, add to the mixture the extraordinarily difficult issue of judgment, when these principles conflict, and I think that gives you a sort of framework, it gives me a sort of framework and I recommend it in my annual course to others, to try to assess these issues.

  Q211  Dr Spink: There is a lot being said—you will have heard earlier—about human dignity. Professor Gillon and Simon, do you believe that human dignity is best served by doing this research within the very strict 14-day rule and then destroying the products, or by not doing this research? Does either of the panel have any estimate of the number of people who potentially are afflicted by these diseases and could benefit, if there are some positive outcomes to this research down the years?

  Professor Gillon: As has already been indicated in the previous panel, the concept of human dignity is a very complex one and people have different accounts of what they mean by it. I think that the first of the three offered by Dr MacKellar is the most plausible one, which is to do with the autonomy of the individual, the Kantean view of dignity. On that basis, it seems to me perfectly clear that this sort of research does not offend anybody's dignity and, on the contrary, may very well enhance dignity, in the sense that medical treatment does enhance dignity, of the people who may benefit from it.

  Mr Denegri: I would agree with that. We do not believe that it compromises human dignity, in a way, because I do not think anything has been suggested that would not be within the 14-day limit. We do think it is in the interests of those people, human dignity, of that larger group. In terms of numbers of people affected who might benefit from that, if you take Alzheimer's just as one example, there are currently 800,000 people with dementia in the UK, and then, of course, you are also thinking of their families and their extended circle, who are suffering from that disease in different ways. Then, of course, there is the cost in terms of the impact on our healthcare system and our social care system. I think there is a wider social benefit there from this particular research.

  Q212  Chairman: Simon, you were quite clear, in answer to my first question, that a significant number of the charities which you represent are supportive of this line of research, yet, to my knowledge, and correct me if I am wrong, in terms of straightforward, human embryonic stem cell lines we have not seen any major advance in terms of treatments yet. Why are we not concentrating just on that rather than going down this side-alley?

  Mr Denegri: As I understand it from my members, there is a clear issue in terms of the shortage of human eggs, which they are fighting against—if I can use that language—and that will continue to be pursued. I think the suggestion is may be that perhaps they may go for any potential technique at all costs. I can assure you that these are organisations which are spending public money they have raised on a daily basis and they will be looking at these sorts of scientific avenues very rigorously, both internally, as organisations, but with their own scientific experts.

  Q213  Chairman: What I am trying to get at is, is there no avenue that you would not go down, or do you see any of these as opportunities to produce cures, even though there is no clear evidence yet that is the case?

  Mr Denegri: No, certainly not about going down any avenue at all costs, if I can put it like that. I think that is one of the things which interests me, when sometimes it is said that, of course, the patient groups for whom it will be directly relevant will always go for this research and so will the patient constituency around them. My experience of working in these charities, where you do have a strong patient group around you, is, yes, they will want to see research pursued, very vigorously, but they also see themselves being there as almost encapsulating society's interest and to ensure it is in the public interest and being done in the best possible way and within the tightest regulatory mechanisms possible. It is not without due concern to what is ethically appropriate and right.

  Q214  Chairman: What has been suggested strongly to us is that, in fact, rather than going down this particular avenue, if it was banned, as the Government originally intended when it made its press statement, but there would be a greater concentration, for instance, on the use of adult stem cells, in which case there are plenty of those available and that would be a much more profitable use for your charitable organisations, in terms of research. How do you respond to that?

  Mr Denegri: I think what my members are telling me is that this is a potential avenue for combating that shortage, that it will eliminate some of the inefficiencies in the current process which exist with human embryos, and in some cases for instance Parkinson's disease, it does offer the opportunity to create your own brain cells, for instance, which is not possible currently for obvious reasons. I am not too sure whether I am responding to your question clearly, but I am trying to.

  Q215  Chairman: I am just thinking, where there is a limited level of research funds, are you better going down an avenue where there is some real sense of hope, rather than going off down another avenue which may turn out to be perfectly fruitless?

  Mr Denegri: They would say, if they were here with me, that it is an avenue worth exploring and it looks potentially highly viable.

  Q216  Dr Harris: On the original ethical question about dignity it was also suggested that the `yuck' factor was something we ought to take into account. I do not know whether that was ethical or not but can I ask you whether you think it is?

  Professor Gillon: I think that Mary Midgley's view, which others share, that was mentioned earlier, is a very important one, to see the `yuck' factor as a yellow light or a flag waved, or whatever metaphor you want to use. Sometimes a `yuck' factor is tremendously important, it is very important to feel `yuck' when you see some person beating up a defenceless person in the street, you should have a `yuck' factor which says it is disgusting and appalling and wrong. Also we know that there are lots of occasions when people's `yuck' factor itself is wrong. The `yuck' because somebody has a black face, or because somebody is disabled, and many other `yuck' factors which arise, are simply morally wrong and we have to educate that they are wrong and we must educate ourselves not to have these `yuck' responses; so `yuck' factors can go either way and you have got to think about them.

  Q217  Dr Turner: Who do you think should decide on the ethical and moral issues; should it be the HFEA, should it be Parliament, or should patient groups have the final say? Who do you think it should be?

  Professor Gillon: That is a frightfully complex question. It seems to me that ultimately all moral agents should decide; and then the question is, when it is a question of a democratic decision on behalf of others, who is to do it, and I do not think there is a straightforward answer to that. My understanding of it is that Parliament is the ultimate decider, as the other people in the previous session have already said, but that it can delegate decision-making to other organisations. As I have understood it, that is what it has done with the HFEA. It has said, "Within the limits of this Act, get on and then decide;" and this seems a perfectly reasonable thing to do, until you come to situations where it is not clear whether the Act covers it or not. I am persuaded that the Act and the current legislation do cover it, that if it is the case that it is all right to experiment on human embryos, as Dr Harris already indicated earlier on, and then destroy them within 14 days, then it seems to me simply illogical to say, "But you can't do that with human chimera, animal chimera embryos." I just do not understand the logic of it.

  Q218  Dr Iddon: Do both of you think that it is reasonable that the HFEA have held up this line of stem cell research, probably for over a year, by going out to consultation, and even at the end of that perhaps they will hand it over to Parliament for a decision, we just do not know? Is that reasonable, the delay to the research?

  Mr Denegri: No. My members do not think it is reasonable and my membership would say that we feel it was allowable within the current regulatory regime, because that was what was being proposed. Although we welcome the public consultation around this issue, the delay to the research is not helpful, it is not helpful to either my members or generally research in the UK.

  Professor Gillon: My response is that if the HFEA actually does not know what it should do, rather than delaying by public consultation, then it should ask Parliament, "We do not know whether this is covered under the Act or not and whether we have authority to do it; please tell us." I think that would be the way I would go. I think the issue of public consultation is a very difficult one. It is very important to know what the public, whom you represent, actually think about things, but I think also it is very important to know why they think about it. The bottom line is not sufficient in ethics, you want to know the reason that you get to the bottom line and there is quite a lot of evidence that once you start asking people the reasons and then you give them potential counter examples often they can change their minds. A PhD student of mine did exactly that sort of work, a sort of philosophical and empirical examination of people's attitudes to ethical issues, and he found that people changed their minds as they went through the questions and looked at the difficult questions which followed. It seems to me that public consultation is actually a pretty difficult thing to do, and if it is going to be done it should be done extremely well.

  Q219  Dr Iddon: These are very technical areas to understand and it is just as difficult for Members of Parliament to get their heads round some of these ideas as other members of the general public, and we are representatives of the general public, of course. How do you think we should go about educating the general public so that they can make decisions on difficult issues like this?

  Mr Denegri: I think there are a number of ways in which this can be approached. I think it is true we are suffering a sort of moderate case of the `yuck' factor at the moment, but I would say also that it has been led perhaps by some `yuck' leaders and we do not necessarily know whether the public are in that `yuck' place. We do know that, broadly, out there, the public support stem cell research, maybe not on this specific issue we know enough, but broadly, in terms of stem cell research, we know that they are in support of it. I think there is a range of mechanisms; there are some very good ones being promoted by Wellcome Trust and MRC and others, but I think where the real engagement can happen is through medical research charities. A lot of the charities which have given evidence to you, such as the Alzheimer's Society, Parkinson's, motor neurone disease, have very active public involvement programmes, which involve patients and the public throughout the grant application and award process, they engage them in ethical and other debates around the research that they are looking to pursue and it is that sort of conversation which I think we should be trying to generate, an ongoing conversation. I was quite struck by Malcolm Wicks's evidence to the Committee where he was quite bullish, I think, in comparison with the Department of Health, about this, but where he said, "We do need to bring the public along." I think we do need to bring the public along, Research charities can provide, as they do already, a real lead on this, they have done this in terms of animal research issues and broadly in terms of stem cells, and I think again we can do the same here.

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