Select Committee on Science and Technology Minutes of Evidence

Examination of Witnesses (Questions 760 - 779)



  Q760  Dr Harris: What evidence is there from, for example, unregulated jurisdictions that there has been any particular harm to children who may have been born which would justify us saying we need to regulate to prevent those harms? Alastair opposes "saviour siblings". In the case of the "saviour siblings" there is no clear evidence of harm to the child that is going to be born as the "saviour" and clear evidence of amelioration of harm to the child that is helped. On that basis do we not have, if you are adding up welfares of children, both existing ones who I would say probably have a stronger claim to it and putative ones, a moral imperative to provide this technology to reduce harm and save life rather than, as you have indicated in paragraph 4 of your evidence, actually stopping that activity?

  Professor Gill: It seems to me you are reversing normal medical ethics at this point. Normal medical ethics says we do not have medical interventions on individuals unless there is some benefit to them and that is the normal position. Elective ventilation without prior consent was deemed to be unethical and illegal on precisely that ground. This is a very rare situation in which medical ethics struggles to find a justification for a medical intervention on one individual without that individual's consent and without any benefit to them. I think there is an argument which can say, as the BMA has tried to say, that there might be some benefit to that "saviour sibling" in that they will not have grieving parents. It is quite a narrow point. I would differ slightly from Alastair in the sense that I do think there are grounds for being compassionate in this area, but I want very strict conditions for this. There really must not be any other therapeutic path possible and there must be only minimal discomfort to the "saviour sibling" from anything that is transacted and that sibling really must be valued and cherished and loved as a person in their own right so that you are not using a person instrumentally for the benefit of somebody else. Having made all those conditions, I think on compassionate grounds I am certainly sympathetic to the idea of "saviour siblings".

  Q761  Dr Harris: What about the disasters that have happened in unregulated jurisdictions?

  Professor Gill: In the case of novel technologies very often one is trying to anticipate what these might be and this has been some of the problems with PGD for example, and the on-going debate about the effect of IVF full stop. Ethicists were rather cautious in the first place about this. It probably went ahead at a time when there was still probably ethical disagreement about whether it should go ahead. I think we have learnt to value the benefits of IVF, although I gather that there is still some alarm in some quarters about the effect of IVF on the future health of the children. I have not examined that evidence carefully myself. I did examine the initial evidence, such as it was, suggesting that there might be abnormalities as a result of IVF, but we never know. Science makes these jumps and it sometimes makes these jumps by doing things on animals and then on human beings. I think it is right that we should be cautious, but it is always difficult to cite evidence of things which have not actually happened yet.

  Professor Campbell: I have been clinically involved in this in the sense that I have been asked to advise in a situation where a child was born, the other child was five years old and they were the right match for bone marrow to a sibling. I know that you have already got a problem there because you are going to do an intervention on a child who cannot possibly give consent, you are going to stick a needle into a bone and pull out bone marrow and so on. They will thank you later perhaps, but at the moment what you are doing is not for their benefit except in an obscure way. The "saviour sibling" scenario is one of double jeopardy in that not only are you going to be doing that to this child once born, if that is what you do, but in fact the whole reason for conceiving that child is for the sake of someone else. I do not believe our society should go down that path of creating children in order to serve the ends of others.

  Q762  Chairman: The Scottish Council on Human Bioethics has told us that the process of human development is a continuous one in which any demarcation would be arbitrary. I want you ethicists to be straight with me, please. Is there an ethical solution to the status of an embryo? How do you make that judgment as an ethicist? Do you leave it to the medics or do you both do it together 50:50, 60:40 or whatever? I have asked that question for years and never got a straight answer from anybody. There are people who have given me straight answers but I do not believe them.

  Professor Savulescu: It is true that development is gradual, but there are significant landmarks along that journey and at 20 weeks the foetus becomes conscious. If you want to ask when does life begin in a morally significant way, one way of answering that question is to ask when does life end in a morally significant way. As a society we now accept brain death as the criterion for death and in fact we allow the withdrawal of life prolonging medical treatment from people who are permanently unconscious. Tony Bland is the most famous example. Indeed, we allow the withdrawal of medical treatment from people with severe brain damage. So if our life ends when our conscious life ends in a morally significant sense, our life begins in a morally significant sense when our conscious life begins and that is at around 18 to 20 weeks. That explains why we tolerate early abortion, because most abortions are before 12 to 14 weeks before the foetus has any chance of being conscious. That explains our social practices and it also is consistent with our attitude to the end of life. That is the simplest answer.

  Q763  Chairman: Robin and Alastair, would you agree with that?

  Professor Gill: No, I would not.

  Q764  Chairman: Oh, dear! Carry on, please.

  Professor Gill: I have always worried about that argument from philosophers because it seems to me it ultimately privileges philosophers themselves. Since the argument is that consciousness and thinking is the most important thing about a human being and we know that philosophers are the best people at thinking and so ultimately the philosophers are at the top of this tree and at the bottom of the tree are the people who cannot think and in the middle are one or two people as well and maybe parrots and things and higher apes more at this end and so on—

  Professor Savulescu: This is not about thinking, it is just about experiencing simple pleasure and pain. There will not be any thinking.

  Q765  Chairman: I know we are not going to get consensus from you, but please argue through me.

  Professor Gill: We have to take into consideration not just how that person values themselves or what they think or what they feel but what other people feel about them. It makes me extremely uncomfortable if we only value a person for what goes on inside their head. I think we are also people in the sense that we interact with other people and we are loved by other people. I think there is still room for progress on this. I am sure you do not read Church Times on a regular basis.

  Q766  Mr Key: Yes, I do!

  Professor Gill: John Habgood, the articulator of the gradualist position, this week produced a very startling article and I would certainly recommend that to you. It puts very well a case which I think can be shared by humanists and religious people alike about how we understand the individual as somebody relating to others but with increasing respect as life develops.

  Q767  Bob Spink: Is not the pragmatic point here that the foetus or even the embryo is a potential human being that will become a real human being, that will have needs and rights and that deserves protection during that very vulnerable stage before it can shout for itself and that it must look to society as a whole, ie to the law makers, to give it that protection and should not that protection be paramount?

  Professor Campbell: I think the potentiality argument has some difficulties in terms of you can look at all sorts of potentials. For example, every sperm has the potential to unite with an egg, so the potentiality argument does not really solve our problem. It is straightforward enough.

  Q768  Bob Spink: It is not just a potentiality argument because that embryo will become a human being unless something intervenes to prevent that.

  Professor Campbell: There are technical questions here in relation to the very early development of embryos. I believe that what has been called gradualism is really the only way to go in terms of getting some kind of consensus in our society and that is to say, we would be appalled if someone said human embryos have no risk whatsoever, you can make them into ornaments, earrings, you can do what you like with them, you can cook them up for supper. That is appalling on the one side. On the other side, for the vast majority of people to say that this collection of cells at that point is the same as a living child simply is an over-statement. Gradualism—and it is a gradient, we are not talking about open and closed—is saying that as we see this increasing development the moral questions become increasingly serious in relation to what we may or may not do in relation to it and I think that has to be the basis for our regulation. Even though people's personal views and religious views will differ from that, in terms of a basis for regulation I believe that gradualism is the one.

  Q769  Chairman: And it is a consensus opinion?

  Professor Campbell: Yes.

  Professor Savulescu: Gradualism has to be squared with other practices around early human life, such as the termination of pregnancies, the use of the morning after pill. So whatever you include in terms of reproduction research has to be consistent with our gradual suppression in other areas. The second point is that it does not give us any answer as to how we should treat a four week embryo, how much respect, in what way, it does not provide any action.

  Q770  Mr McWalter: When Professor Savulescu said about the centrality of consciousness you disagreed, but I thought you disagreed by saying that that does not do everything for us because we still want to treat. Let us take the example of the dead body. We want to treat a dead body with respect. There is a way of treating a dead body which is consistent with that body having been the body of a person. Equally, a conception of respect clearly applies earlier for the reasons that Professor Campbell has just given. I think you need a respect principle which may well have, as it were, gradual tones but also a demarcation point at which you say this is a recognisable human life, but that is not the only thing that it is entitled to respect.

  Professor Gill: I agree. I think the respect principle comes in part from respecting that individual and respecting that individual who other people have loved, that is important.

  Q771  Paul Farrelly: One of the problems in considering these hotly debated topics in a Committee like this is that you can talk to libertarians and you can talk to the extreme pro lifers and nothing you say will actually change anything in their minds. In this instance, in these hotly contested areas, the definition of something very much depends on the purpose to which you are going to put the definition. What prospect do you think there is for getting a consensus because this is the only way forward given your libertarian position?

  Professor Savulescu: As I have argued from the moral perspective, the morally significant line is around 18 to 20 weeks. From a public policy perspective, you clearly do not want to introduce a law that permits destructive research on 18 week foetuses. Just as there may be no difference before birth and after birth in terms of the capacities of the human infant, we draw a morally significant line for social purposes at birth. I think it is for you to decide what line at the moment will be publicly acceptable. Maybe it will be three or four weeks into development for the purposes of research, but that is a question I cannot answer, that is where it is necessary to bring other people on board, I am simply providing the moral framework for that, and it is a question of what people will accept at this point in time.

  Q772  Chairman: Are there now new moral grounds to change the 1990 Act and to prohibit embryo research in your opinion?

  Professor Savulescu: Yes, I think the 1990 Act should be liberalised to allow more experimentation and also wider use of assisted reproduction for non-traditional uses.

  Q773  Chairman: You mean by chimeras and things?

  Professor Savulescu: I certainly do not see any moral objection to creating human/non-human chimeras if those are destroyed early in development for valid scientific research.

  Professor Gill: No, I would not change it. I am conscious that it represents a sort of truce. Anybody who does ethics widely in Europe will know that we are already regarded as dangerously liberal in this country in this respect. I personally support it. I am on the Stem Cell Bank Steering Committee. I know that a number of religious people are deeply opposed to what we do at present but I am not. I think for the moment we have gone far enough.

  Professor Campbell: The Act got it about right. The 14 day limit is now being adopted elsewhere. I think we should leave it just where it is.

  Q774  Mr Key: This time yesterday I was involved in a debate on telephone boxes and we were advised that there was one MP who was conceived in a telephone box. Unfortunately we were not able to discover who. Perhaps he or she will own up! Given that people are currently travelling to Spain for eggs and to Denmark for sperm and given that 1% of all babies born in the UK are from IVF and that 50% of all babies are conceived by accident anyway, and given that the most successful IVF treatment is in Finland, which is totally deregulated, what would be the impact of deregulation in the United Kingdom or self-regulation by professionals? In other words, the HFEA would be scrapped.

  Professor Savulescu: We know that in Sydney, Australia there is no regulation. The practices are essentially the same as Melbourne where they have some of the most restrictive laws in the world and the first Infertility Treatment Act 1984. The only difference is there are a handful cases for sex selection using PGD for family balancing reasons where over 50% of the children born are female. There hardly seems to be any social disruption in Sydney compared to Melbourne.

  Professor Campbell: I disagree with Julian's conclusion. I am interested in where you got the statistics, particularly the one about 50% being by accident.

  Q775  Mr Key: Previous evidence.

  Professor Campbell: I am very much an advocate of, and indeed involved in, the supervision of doctoral work and post-doctoral work on the whole question of harmonisation within Europe. It is a very tricky one in this area. I think that if the UK just threw in the towel and said we should just deregulate we would not actually be doing the right thing in relation to our place within the negotiations that we must continue to have with our partners in Europe about what would be a sensible regime in relation to assisted reproduction. We should hold on to regulation. That does not mean it is a "blunder bus" or that it is absolutely cast in stone but it does mean that we should hold on to that in order to negotiate and to achieve something that will never prevent the "tourism" you mentioned but, nevertheless, will seek some kind of European consensus.

  Q776  Mr Key: Are you talking about white Anglo-Saxons here as opposed to anybody else in the world, that we should stick together?

  Professor Campbell: Not at all. Let us not get into Europe and why we are in Europe. The fact of the matter is that in Europe there are plenty of non-white, non-Anglo-Saxons and what I am concerned about is really the documents that come from Europe which are relevant to us, treaties of various kinds, agreements, some of which we have signed, some of which we have not. We cannot close our eyes to these. This is part of a political reality. We should try to ensure the UK is responsible in relation to that in the final decision about how we regulate.

  Professor Savulescu: I do not understand why you necessarily want to harmonize with Europe. You want to do what is right and what is right is to allow individual couples to make their decisions unless there is a serious risk. The job of regulatory authorities in this area should be in evaluating serious risks and that is the right thing. You should do the right thing.

  Q777  Paul Farrelly: We have just been talking about "tourism" by individual couples. I would like to address the question with respect to professionals, doctors and people who are regulated and licensed by the HFEA as well as the medical authorities. To what extent should our laws here be extra jurisdictional, ie individuals should be punished or unlicensed for having encouraged or sponsored or funded activity overseas for which licences would not be granted?

  Professor Campbell: I have not thought about that one. It does come up in other areas like trying to create a market in organs. This should be explored without it being too strong, too severe, but that is as far as I can go on that.

  Professor Savulescu: I think it is a very interesting question. It is like child pornography. We believe child pornography is wrong so we pursue people no matter where they perform it. If this is really wrong, we should be pursuing them and punishing them wherever they do it, but we do not actually believe it is wrong, that is why we do not do it.

  Professor Gill: You used the words "assisting people" to do this, aiding and abetting in other words. It does seem to me that there is something important there because, after all, we have actually started ignoring that—I think wrongly—in terms of people aiding and abetting people to commit suicide for example and going abroad to do that. A number of newspapers have done that and they have not been prosecuted as a result of that. I cannot think why they have not been. I do not think we can actually stop people from doing things when they are abroad, but should we actually be aiding and abetting people in this country to do that? That seems to me very questionable. Indeed that seems to me to be what is at the heart of the latest stories about late term abortions. There is an aiding and abetting involved in assisting somebody to do something which is not legal in this country and the assisting is being done in this country. It seems to me that is clearly wrong.

  Q778  Geraldine Smith: Julian, your views frighten me because I think we need some regulation. It has been alleged, you can tell me if it is true, that you would justify aborting children with teeth defects. That frightens me because I was born with a hole in my heart. You may well think that a free-for-all is okay but a great deal of people disagree with you and their views have to be fed into the process, the Church's views, philosophers, theologians, all sorts of people, not just people with extreme views such as yourself.

  Professor Savulescu: I agree with you that we need public education. Whether our laws should follow those opinions as they are now is another question. I have teeth defects from tetracycline staining. I fully support people's right to have a termination of pregnancy for teeth defects, for heart defects, for skeletal defects, for any defects or no defects at all. Ninety-five per cent of terminations are for normal pregnancies. I simply fail to understand how one can say that foetuses are a morally significant being and so we should not abort on the basis of a tooth defect and yet we allow tens of thousands of abortions for no abnormality whatsoever. We allow those because we think that couples or women are best placed to decide when to have a child or in what circumstances to have a child. If this couple believes that they cannot give a child with a tooth detect the best life, why is that any different to a couple saying we cannot bring a third child into the world at the moment because we have not got the resources to do it?

  Q779  Geraldine Smith: You have also spoken at a conference of the Royal Society recently on why we are morally obliged to genetically enhance our children. Can you explain what you mean by that? Clearly that frightens me.

  Professor Savulescu: Most people accept that we should treat disease and prevent disease. Why is disease bad? It is not just intrinsically bad. Cancer is bad because it shortens your life, it shops you interacting with your family, it stops you achieving your goals, it prevents you living a good life. There are many other genetics states that will determine how our lives go. For example, impulse control is highly correlated with socio-economic success. Your ability to control your impulses and your anger is going to have a significant impact on how well your life works. People are familiar with uncontrollable rage. That can land you in prison. If we think that disease is important because it makes our lives go worse, why do we think that these other aspects of how our life goes are not important? If we can improve those, why should we treat them any differently to disease?

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