Select Committee on Science and Technology Minutes of Evidence


Examination of Witnesses (Questions 780 - 799)

WEDNESDAY 13 OCTOBER 2004

PROFESSOR ROBIN GILL, PROFESSOR JULIAN SAVULESCU AND PROFESSOR ALASTAIR CAMPBELL

  Q780  Dr Turner: If we pursue pre-genetic diagnosis and embryo selection too far we run into eugenics per se. Do you consider that using PGD to eliminate a genetic disorder constitutes eugenics? In any event, do you have views on the moral validity of eugenics?

  Professor Gill: It does seem to me we want to make a very careful distinction when we talk about eugenics. What I think most people object to about eugenics is coerced eugenics. This is political regimes deciding that some people should not exist or should not continue to exist. Rightly, that is regarded fairly universally now as being morally deplorable and as being one of the great shames of the 20th Century. Eugenics actually just means good beginnings. If you are asking if couples who are concerned about the welfare of their children when they know they have a known serious genetic risk—and I would not go down Julian's path at all, I would want to add the word "serious" at every point—should be allowed to have children that do not have that genetic disorder and it is safe as far as we can see to do that, then my answer is yes. Where I differ with Julian at almost every point is when we are involved in medical interventions. I do not think this is simply a matter of the couple's choice. It involves the medical profession and it involves other people in doing this. I do not follow Julian's libertarian line but I do think that the word eugenics does not resolve the ethical issue. If you are talking about coerced eugenics, of course it does. If we had a law which said that when there was a test and they found that the child, for example, had a particular disease and must be aborted, I would be the first to oppose it. That would be coerced eugenics.

  Professor Savulescu: We practise two forms of eugenics already, one of which I believe to be acceptable and the other unacceptable. The acceptable version is when a couple has a test for Downs Syndrome or any other genetic abnormality and decides on the basis of that to abort the foetus. It is acceptable, as Professor Gill said, because it is voluntary, it is their choice about what kind of child they have. Unacceptable eugenics is where there is a state blueprint for what kind of society there should be and that is precisely what we have when we restrict access to reproductive services through the HFE Act, because what we are doing is we are saying, "This is the blueprint for society and you cannot access these technologies in this way because we deem it unacceptable". That is the spirit of eugenics that was practised in Nazi Germany.

  Professor Campbell: Let us hold on to the point, which is that there is a debate to be had about whether there should be some regulation in this area, that is the debate that I think this Committee is going to continue to have and then they will determine what they believe is right in terms of regulation. To then push that to imposing some vision of the nature of humanity on people is nothing like the current situation which, if you actually look at what happens under the current regulation, is quite liberal in terms of where it might prevent any conception taking place. So it is nothing like imposing some vision on the future. I find your theme much more frightening, which is that we are going to bring technology in in some way that will allow people to try to create well behaved children in the future. It sounds to me like a Brave New World or even 1984 in the way that it regards this as using technology in order to mould or shape human beings in certain ways. It is for that reason that we should stick with a very simple and ancient medical principle and that is primum non nocere, above all seek to prevent harm and that is the one which currently determines things like decisions about terminations in relation to a serious handicap which an individual will have. If you start going down this other line where we are going to judge that, for example, it is better to be intelligent than not to be intelligent, it is better to be conformist than not conformist, I think that is where we are going into a nightmare and we should not go that way.

  Professor Savulescu: When I decide as a parent to improve the behaviour of my children or to try to enhance the intellectual abilities of any child I make a judgment about the risks and the benefits and what I think will make for the best life of my child. Why is genetic and reproductive technology any different to all the environmental interventions? We already accept they have biological effects. These things are not just things that happen in the air, they affect children's biology.

  Q781  Dr Harris: Should we not make schooling compulsory as well?

  Professor Campbell: Analogies break down.

  Professor Gill: The point Julian has yet to answer is, and it is a point I have made several times already and he has ignored it every time, that you are involving other people in this, you are involving the medical profession.

  Professor Savulescu: Yes, let them decide for themselves. You want to say to them you cannot do it. I am saying as an individual doctor you should decide yes or no.

  Q782  Dr Turner: It is quite clear that embryo selection is a tool of eugenics in practice. Given that half of all disease is estimated to be genetic, do you think that "preventative medicine" implies the use of PGD and embryo selection as an extension of preventative medicine, and where would you set the limits on embryo selection?

  Professor Campbell: If I could take issue with the way you put your statement about the genetics factors in disease.

  Q783  Dr Turner: I am just quoting a document.

  Professor Campbell: It is rather more complicated than that as I understand it. We are talking about the interaction between predisposing conditions and environment and lifestyle is an important factor as well. I am about to chair the Ethics and Governance Council of the UK Biobank where UK Biobank will be trying to get half a million people's genetic profiling and records and so on on the understanding that this is highly complex. One of the dangers—let us not start a dog fight again—in the kind of argument that Julian is putting forward is also what some people call genetic fundamentalism, which is that you think if you get the genetics right you will get the rest right. That is not the evidence we have about disease. Disease is a subtle interaction, it is often multi-factorial in its causation including in its genetic background and for that reason we should not place too much on the genetic factor. Environment is going to be very important, the living conditions of people, the chances for good parenting, schooling and all the rest of it. These are all factors that will affect whether what was there as a possibility will become an actuality.

  Q784  Dr Turner: But you do accept its use for serious genetics disorders. Where do you set the limits there?

  Professor Campbell: There are conditions in which the prediction is more secure. I may still be wrong, of course. After all, we do have terminations when it turns out the baby was not affected at all, so you could have a false positive, but the predictions are more secure in terms of potential outcome and in that area I feel comfortable. I do not feel comfortable with the extension of it to attempt to engineer the future by a whole range of genetic predictions.

  Professor Gill: There has been a persistent worry in Parliament about the role of insurance in this and there have been a number of Select Committees on this particular issue. I think what is remarkable about this is that the confidence with which everybody started, we would be able to predict X, Y and Z and this would have insurance implications, has got narrower and narrower.

  Q785  Dr Turner: You have been reading our reports!

  Professor Gill: I am afraid so. Even with Huntington's Disease, which is one of the few that people really can agree about, the fact is that if you have that gene then you will get Huntington's. There is no way of estimating at the moment how severe it is going to be or even when the onset is going to be. The families themselves with Huntington's in the majority of cases do not opt for genetic diagnosis because it is part of their family. So there are a lot of ambiguities there. I think we should learn from the role of gene therapy. When gene therapy started there was great confidence this was the way forward. There is huge ambiguity in that whole area now, both about whether it actually works and, if it does work, what the implications are and what the consequences are. I think as an ethicist I want to be extremely cautious about all of this and I do want the protections and I do want you to be cautious and not over-estimating what is achievable now.

  Professor Savulescu: Just as genetic fundamentalism or genetic essentialism is wrong and so is the idea that everything is environmental, it is clear that there will be some genetic contribution. Let us take an example that I have written on. Haemophilia is an x-link disorder which means that males are affected and females carry the gene. In the service where I worked there were requests by healthy female carriers to use genetic selection to ensure that the child that they had was not a carrier. A carrier will generally be healthy but might have minor bleeding. We know, as we have seen it, it is a very mild abnormality. It has a chance of passing the gene on. Here we seem to have a simple choice: do we allow this couple to make a choice as to whether to have a carrier or not to have a carrier or do we leave it to chance? I do not see what the ground for intervening in that situation is even though the abnormality is very mild. I do not see what the ground for interference in that decision is.

  Q786  Dr Turner: Germline therapy is not allowed at the moment but it is a fair medical possibility. Do you see any ethical differences between PGD and germline therapy?

  Professor Campbell: Yes. Clearly what we are doing is introducing some change which will be passed on through the generations exponentially, so something that we might see as apparently beneficial at one generation after about four generations could turn out to have effects that were not predictable at the time but, nevertheless, have extremely adverse effects. I do not think that is the sort of lottery that we should enter into in relation to future generations. We know how often science has got things wrong and how there have been quite unpredicted consequence of scientific interventions. That is why I believe we are quite right to prevent germline therapy. We are back to the precautionary principle, Evan. I think in this case nobody can answer what the likelihood is, that is the trouble. So, you cannot say, "Give me the evidence that it is going to do harm." We do not have the evidence and that is the trouble. We will not have the evidence until that harm has been created and created across a very wide range of potential individuals and, for that reason, I think the majority of opinion, scientific and lay opinion, is that it is just not a road that we should go down.

  Professor Savulescu: Even a libertarian here can accept regulation because there is a difference between PGD and germline gene therapy. In PGD, you are selecting between two different individuals. Say that we are testing for cystic fibrosis—this one is normal, this one has cystic fibrosis. We are choosing which child to bring into existence. Now consider the germline case where we have an embryo with cystic fibrosis and we try to correct that genetically. If that goes wrong, we will be harming that future individual. So, there is a potential for harm which is much greater with germline gene therapy than there is for selection with PGD. So, for that reason, I would support regulation in that area. Unlike Alastair, that would not be a reason to exclude it entirely, it would be a reason to balance the risks and the benefits because of course, if you have an embryo with cystic fibrosis and you have the potential to cure that in every cell in the body for a disease with no cure, we have to weigh up the risks and benefits because to deny them that intervention is to commit them to a future of cystic fibrosis. It is not a question of ruling it out of court, it is a question of evaluating it at the time.

  Professor Gill: When we talk about germline interventions, it is quite a different thing from gene therapy in this area. In germline interventions, it seems to me that PGD is a much more preferable path than any kind of germline intervention. It is exactly why I do not believe in the possibility of human reproductive cloning because obviously there is no consent and I do not think there is any real reason for doing it but, most worrying of all, you really cannot tell until you do it what the consequences are going to be.

  Q787  Dr Turner: You all seem to make the same ethical distinction; it is the difference of risk that matters.

  Professor Gill: And it is generational and that is the problem.

  Professor Savulescu: There is benefit with the generation too.

  Professor Gill: Yes, but you can do it through safer means, PGD.

  Q788  Dr Iddon: I want to return back to welfare of the child aspects which came late into the HFEA debate of course. What has the suitability of the parents got to do with this? Why do they have to effectively pass a test of good parenting?

  Professor Campbell: I use the analogy with adoption here which has its limits. All analogies have their limits and I was trying to say this a minute ago to Julian when he was using analogies that do not perfectly fit. I accept of course that a child born through assisted reproduction is not the same as a child who is adopted but there are some similarities in cases where there is a parentage that is other than biological parents on either one or both sides and we know this from individuals who have spoken about this, for example in the product of donor insemination for anonymous donor. We know that some people find this extremely difficult to deal with and are extremely distressed when they discover that actually there is, as it were, an unknown biological progenitor somewhere. That is why I believe again we have some kind of regulation although I think it is pretty light-handed regulation but it is regulation that allows the couple to get outside the privacy of simply the conception that would normally be our own experience and talk over their plans and talk over how they see bringing up this child in order that we can minimise risk to a child of what could be a difficult situation for them. I happen to be the parent of some adopted children and I do know that there are extra vulnerabilities there. So, it has not been done in a heavy-handed way, it has been done in a way that really is seeking to help cases, now in some cases individuals, not couples, to think it through before they agree and also to avoid evident harms. I have seen cases from the clinic in our area in Bristol where people have applied who have a record of family breakdown, domestic violence and all the rest of it but they want to have another child and I think this is an opportunity to say, "No, we will not do this." There is nothing to stop them in many situations just going out to a club somewhere and getting pregnant and we cannot control that but you can control it within the context of a clinic providing services. I think it is reasonable provided that we do not think that we are going to have lots and lots of criteria of good parenting because that would be ridiculous.

  Professor Savulescu: At the moment, we have discrimination against gay couples, single couples and people with HIV on the basis of people's attitudes to them. As you correctly infer, these people could have children outside of the area of assisted reproduction freely, yet we make judgments about their worth as parents as a category: no IVF for gay people. Surely that is a decision that should be made on a case by case basis. Just as Alastair's case of a couple with a history of child abuse, the doctor has to make a decision about whether to help that couple. These discriminatory attitudes of putting people into categories went out 20 years ago, yet we still have them in place in the area of assisted reproduction. Doctors should be making those decisions, not legislative bodies.

  Q789  Dr Iddon: You have partly answered my next question but the other witnesses might like to respond to the question. What are the ethical grounds for in fact refusing treatment on the basis of several conditions, age being one, sexual orientation, which has just been referred to, being the other and marital status? I have to say that the vast majority of my constituents are ruled out on income grounds.

  Professor Campbell: While I am in favour of regulation, I am not in favour of discriminatory regulation and I have difficulty with current aspects of the guidelines. That does not mean it should not happen, it just means how it should be operated. If, for example, we allow same sex couples to adopt, as we do, it would be quite odd, extremely odd, to say that, in that circumstance, same sex couples could not receive reproductive assistance. I think the whole question of single people . . . I am with Julian here; we do not disagree on absolutely everything. I think that what we want here is the chance to talk it through and consider it on a case by case basis before such a service is provided. So, it does not have to be discriminating.

  Professor Gill: I think one of the troubles with having a pluralistic society is that, when we do not have guidelines and we deal with things on a case by case basis, because we are a pluralistic society, we find it very difficult to make judgments on an individual basis. I think that is one of the difficulties that we have. I would want to give some attention, more than Alastair and Julian have given so far, to widespread data of the effects upon children of certain kinds of parenting. I realise that it is a contentious area and that it is one that is still being debated and I do not have any dogmatic views in this area, but I do want people to take the evidence seriously. If our concern is primarily not for the rights and liberties of the parents but with the welfare of the child—and I think the welfare of the child must be a prime consideration particularly if we are involved in medical interventions where we are actually doing something—then I think that we have to pay some attention to evidence about different arrangements of parenting. I do not have fixed answers to this but, if that were missing from your own perspective, I would think that would be a serious weakness.

  Q790  Dr Iddon: Professor Campbell, you consider that children should be regarded as a gift rather than as a commodity and there is a danger in the whole of this argument that some people are looking at children, perhaps subconsciously, as commodities rather than gifts. With a view to the later child/parent relationship, does it really matter?

  Professor Campbell: Of course, the criteria here is always what the quality of the upbringing of the child is, how good the parenting is and whether the child feels loved and cared for in its own right. That is always going to be a critical question.

  Q791  Dr Harris: And how rich the family is.

  Professor Campbell: And there are other issues like whether the family can afford to give the child a reasonable environment and so on. I would not for the moment want to downplay any of these or want to downplay the importance of that. Let us go back to the quotation from John Harris right at the beginning where John mentions harm to individuals and he also mentions harm to society. I think that we do have to ask about laws in relation to regulations and in relation to the effects on social attitudes in society as a whole and the reason that I am absolutely fundamentally opposed to some of the proposals that will allow you to, as it were, plan the child of your dreams using technology is that I believe that that is creating society, what we have been trying for years to get away with, which is, "This child is part of my possessions and I am going to have the best possible child." We go down other lines like you see in the States, for example, where children are given drugs to enhance their growth because you want them to be six feet and not five feet ten inches, or you use Ritalin or other products in cases where there is no obvious disorder but in order to try to get your child to achieve better and so on. There are all sorts of areas in which we can go into engineering of people according to our specifications. So, that really is the centre of my argument: it is to say, let us not start going down the line of product enhancement. Let us go down the line of helping people to become parents as best we can but in relation to seeing the child as an individual in its own right, not a creation.

  Professor Savulescu: This is a critical question. There are two views: one is that the child is a gift that is given to us by chance or by God.

  Professor Campbell: I did not mention God, not once!

  Professor Savulescu: The other view is that couples make a decision about what kind of child they have and that is what happens when a couple decide not to have a child with Down's Syndrome or not to have a child of a certain sex. They are making a decision about the child they can bring into the world in their circumstances and bring about the best opportunities for that child. The question is, who decides that? Is it going to be an authority or is it going to be the couple themselves? Whatever Alastair says, by forcing chance on to them, he is forcing his view on to couples. My view is that they should reside with the couple that has to bring up that child for 20 years.

  Professor Gill: Actually, it is not, because you have considered the role for a regulatory authority at several points in your argument. So, we do not actually disagree with each other but what finally has to be in our judgment is a mixture of regulatory authority and parental choice. Where we differ, I think, is where we get the balance, not that you do not believe in regulatory authority.

  Q792  Mr McWalter: If human stem cells have the capacity to eventually form an embryo or a gamete, do you think that that means that experimentation on those should be ruled out even bearing in mind the representations made to the world community by Christopher Reeve?

  Professor Campbell: We are both involved in this because Robin is on the Stem Cell Steering Bank Committee and I was on the CMO's advisory group that led to the amendments to the Act that has allowed stem cell research.

  Q793  Mr McWalter: So, you do not have any ethical concerns about that at all?

  Professor Campbell: No, that would not be correct. I think we should notice that what was said is not an absolutist position for or against but rather is an argument for the justification in cases of potentiality of dealing with serious disease of allowing work, extracting stem cells from embryos. So, it is not either a total prohibition nor is it open, you can do anything you like, it is this difficult middle ground.

  Professor Gill: One of the points we have in common as we are all gradualists is that it is not the only ethical position and, as a religious person, I am conscious that quite a number, not all and in my opinion not the majority, of religious people are vitalists in the sense that they believe that, from the moment of conception, this is a full human person or at least it deserves respect as a full human person. I do not. I regard it as human life, it is manifestly human and it is manifestly alive.

  Q794  Mr McWalter: But you would accept that stem cell research under the conditions laid down by Professor Campbell perhaps although—

  Professor Gill: And I would not obviously be involved in the Stem Cell Steering Bank if I did not accept that position but what I do believe is that it must be for serious reasons, not for trivial reasons. There is constant pressure to have it for trivial reasons but I think rightly there should be constant public pressure and pressure from yourselves to make sure that it is for serious reasons.

  Q795  Mr McWalter: Professor Savulescu, you talked about the primacy of these individual choices but we do know that sometimes a series of utterly uncoordinated individual choices can have clear long-term effects. For instance, the sale of council housing to take one example. We knew that the best stock would be stripped out very quickly and that the next generation would be lumbered with two kids in a fourth floor flat because the normal three-bedroom houses had all gone. We know that was going to be a consequence of those decisions and, if you start transposing that back to the genetic situation, you could easily get a clear pattern emerging among all these individual decisions which would then have very undesirable social consequences. Do you write that into your ethical assessments of the primacy of individual choice?

  Professor Savulescu: Yes. Clearly, if there is a significant social cost and it is highly predictable, that is a reason to interfere. However, that argument is overused.

  Q796  Mr McWalter: It is only one per cent, so it does not apply.

  Professor Savulescu: In principle, yes, if there was a clear social consequence. To take an example: sex selection. This is often used as an objection to sex selection in Britain. If sex selection did deserve the sex ratio significantly in Britain, that would be a reason to allow it. There is no evidence that it would significantly disturb the sex ratio. In clinics that have allowed it in the US and in Austria, people come forward for the reason of family balancing—they have two children of one sex and they want a child of the opposite sex. Indeed, if you were concerned about the sex ratio, you would simply allow sex selection only for family balancing and there would be no effect on the sex ratio. So, I think this argument is right in theory but overused in practice.

  Q797  Geraldine Smith: How do you think the State should provide an ethical framework for professionals to work in assisted conception? Should this be separated from licensing and inspection? What about the Bioethics Committee which just looks at the ethical issues and replaces the ethical deliberating functions of the HFEA?

  Professor Campbell: For quite a long time, I have felt that we are lacking a National Bioethics Committee in the UK and we are beginning to think it more and more unusual in this respect because there are more and more countries that are actually setting up National Bioethics Committees. We have the Nuffield Council which of course is a private organisation and does good work and then we have these individual things that are discussing particular parts, but we do not have a national one. It would be clearly a forum for debate. This morning demonstrated that we are not coming out with a single message but it would be debating, looking for evidence and seeking consultancy and so on. I think I would be very much in favour of such a committee being set up. It would also take the heat off an authority like the Human Fertilisation Embryology Authority which could then become a symbol of licensing in more simple term, a licensing authority of clinics and so on. In the absence of that being a political reality or likelihood, then I think it is good to stay with the kind of authority that will have a range of opinion of the kind that we could debate.

  Q798  Geraldine Smith: Do you think at the moment the HFEA does have a wide range of opinion? Do you not think really that you need some sort of Ethics Committee that does have different points of view and different people, not just scientists?

  Professor Campbell: There are non-scientists on the HFEA and places are advertised and there is quite a good selection process, so it does have a range at the moment. It could never do what a National Ethics Committee could do—

  Q799  Geraldine Smith: But there is no one on there that would be against the principle of destructing an embryo.

  Professor Campbell: That is true. If it going to be restricted by the legislation and in fact you would not go on to the authority if you were opposed to some aspects of the Act, would you? So, from that point of view, a national committee would be rather different in the sense that it could have a real range of opinion. I am a bit of a defender of the HFEA and I say that in my evidence. I think that while no doubt it will change, at the moment we need something like it in this area.

  Professor Savulescu: I think it is a very good suggestion. For example, I think there is a broad role for better education of professionals as well as the public on these issues. For example, I have argued in the paper although I believe the desires of people with disability to use technology to deliberately choose to have a child with disability is wrong, I believe that, if we are serious about respecting people's procreating autonomy, we should respect those decisions. That is a very controversial view and one which most of the medical profession does not accept, but that is a view that I think should be put to the profession. Whether they choose to accept it is another matter but I think the ability to put these kinds of views is very important in a liberal democracy and that we should have a much greater role for professional debate around those issues.

  Professor Gill: I think there does need to be some kind of balancing. I think it is one of the great virtues of the BMA Ethics Committee, in that it does have a balancing between elected members and co-opted members. Inevitably, organisations co-opt people who will be broadly sympathetic with the organisation but electors sometimes put people on to committees because they thoroughly disagree with the committee. I think that balancing is quite healthy. Indeed, it is only in the context like that that you do get minority views, for example the pro-life position, being represented. I do not agree with it but I certainly want it to be there and I think that ethics committees are impoverished if they are not hearing that kind of view.


 
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