Select Committee on Science and Technology Minutes of Evidence


Examination of Witnesses (Questions 180 - 195)

WEDNESDAY 23 JUNE 2004

MS ALISON DAVIS, MR PATRICK MAHON AND DR MAUREEN MCHUGH

  Q180  Dr Harris: Can I take you to a different scenario which is—and I know this is an assumption but let's agree the assumption—that increased use of PGD to screen for medical conditions that would otherwise be diagnosed during pregnancy and lead to abortion, early or late but in pregnancy, if that was increased and made more available and was shown to reduce significantly the number of abortions in utero, especially late abortions, would you consider that to be, albeit not the ideal situation, at least better than the destruction through termination of foetuses and unborn children, as you would see it? So you take it at a very early stage pre-implantation?

  Ms Davis: I think that both PGD and abortion kill a living human individual. The age at which they are killed is of no significance. If you killed a five-year-old child or a 30-year-old person the fact that you had killed would be significant and not the age of the individual killed. So I see the moral argument as the same in both.

  Q181  Dr Harris: That is a very clear answer. I would like to take you to a different issue which is the issue you raised, which we also heard about in the previous session, in your submission where you say that eliminating disability is laudable, eliminating disabled people is not. You call it the ultimate eugenics. If we can leave aside—because I think there are people who do not necessarily share your view on abortion who are also concerned about this—your view on abortion, would you argue that treating someone who is disabled so that they are no longer disabled, in other words completely curing serious disability through a technique (it does not matter what it is, one that does not involve stem cells, for example) would have a bad side because it is removing the disability completely, and if we could do that for a huge range of people there would be fewer disabled people walking around, the same people but who had no disability, would you go as far as to say that that is a bad thing?

  Ms Davis: Obviously not. My primary condition is spina bifida and now it is possible to largely prevent it by the use of folic acid so that the individual conceived does not have spina bifida. I think that is entirely laudable. We do not want to make people disabled who need not be disabled. My argument is that individuals who are disabled ought not to be killed or in the case of embryos thrown away because they are disabled. We have an inherent right to life.

  Q182  Dr Harris: That was my next question because I am trying to separate out your view that the embryo is life from the separate argument which can be made by people who do not share your view on the right to life of embryos that preventing disabled people being born through—and folic acid was the example I was going to give—supplementation could be wrong in itself because it is, regardless of the embryo issue, eliminating disabled people. Arguably, if we were able to do that for all genetic conditions through nutritional supplementation then that might be conceived in your terms as eugenics because it is preventing the birth of disabled people because we are not getting this diversity. Do you share that view separately from your concern about the right to life of embryos?

  Ms Davis: No, I do not. I think that preventing disability from occurring is entirely laudable. Preventing disability by killing individuals who have a disability is to be condemned.

  Q183  Dr Harris: Can I just deal with one other issue in this respect which is that you have a view clearly and it might be argued that you are entitled to maintain that view in respect of your own reproductive choices and the reproductive choices of those you influence and those who share your view but is it right that we should have a society where, even if your view were the majority view, that would, in effect, impose disability by not allowing it to be avoided on people who do not share your view about the equality of the right to life of an early embryo compared to a late-term pregnancy, a foetus in utero late term? Should you impose your views on others?

  Ms Davis: I think there are two questions there. I am not talking about imposing disability on anyone. We are talking here about a disabled individual who is already disabled and already alive. That is the base line. The only question is whether we can, if they are an embryo, throw them away or if they are an unborn child whether we can kill them. I am not talking about imposing disability; I am talking about an individual who is already disabled. So that is my first point. The second point is that there are some things that are unequivocally right or wrong. For instance, we have a law about murder. We do not say that we are imposing our views on people if I do not think murder is wrong therefore I can go and do somebody in. We have absolute arguments and laws which prevent killing of human beings who are born, at least in most cases. I think it is objectively the case that human life begins at the moment of fertilisation. If it did not, for instance, embryonic stem cells would be no use to us if they were not human and live. So I think it is an objective truth that human life begins at fertilisation and from that moment on human beings are entitled to the protection of the law and have the right not to be thrown away.

  Q184  Dr Harris: Your answers are very clear and consistent on the pro-life position and I have not been able to get round that fundamental thing, which is fine. If it could be done without destroying embryos, do you think it is legitimate for a disabled couple, for example the case of the deaf couple, to arrange things so that even though they had a choice and it did not involve selection and killing embryos they could specifically bring into the world a child that shared their disability? Would you have any objection to that? If you do—and I am working on the assumption that it did not involve killing embryos in the process—what are those objections?

  Ms Davis: The first thing is I think it would involve destroying some embryos because if you are selecting a particular sort of embryo then, by definition, you are deselecting another sort embryo and they would be the ones who do not have a gene for deafness or whatever.

  Q185  Dr Harris: Let's say that they were fertile and that it was 100% likely to transmit because they were both carriers of the dominant disorder?

  Ms Davis: So then you are asking a different question.

  Q186  Dr Harris: Yes I am.

  Ms Davis: Should they be allowed to have children? And, yes, they should be able to have children. If you are talking about deliberately selecting an embryo that has a gene for deafness then I suggest that it is wrong to design a child to any specification, whether to be deaf or not to be deaf.

  Q187  Dr Harris: The example I am using is if they needed donor insemination. That is the situation I am talking about.

  Ms Davis: You did not say that.

  Q188  Dr Harris: I am sorry but that is the situation I am envisaging. You do not have a problem with that?

  Ms Davis: I do have a problem because I have a problem with designing children to a particular specification.—

  Q189  Dr Harris: By donor insemination.

  Ms Davis: Sorry, I do not understand what you are saying.

  Dr Harris: We will leave it there. I think you have answered the question.

  Q190  Dr Iddon: Can I put at least one question to our other two guests this morning. Thank you for coming. Patrick Mahon first, in the submission on the consultation you said that you were not comfortable with the idea of parents cloning themselves with a view to having children. Would it be acceptable, in your view, to clone a child that had, say, died in child birth?

  Mr Mahon: No, that is the classic scenario, is it not, and it strikes me that that is exactly the situation where you end up with massive ethical dilemmas where, picking up on a point made in one of the earlier bits of this session, leaving it to the parents does not seem to be a particularly sensible way forward because the parents would only consider these choices in a position where they are already in a very sensitive and difficult state. Personally I normally think relatively rationally and I suspect that I would not be thinking particularly rationally at that point in time. The issue for me on all of these types of discussions is for whose benefit is this being done? In the case of the parents who want to clone their dead child, it is pretty clearly more in their interests than any interests of the child and therefore I do not think that is a particularly sensible thing to do. If cloning were in any sense available to help the child then I think there is an ethical issue there and one has to decide what the relative costs and benefits are.

  Q191  Dr Iddon: Do you think that minimising disability in future generations is a goal that should be pursued for the public good using these techniques we are talking about?

  Mr Mahon: I think I would agree with Alison that the idea of removing disability in ways that occurred before birth, making sure that people are not deliberately born disabled or avoiding disability where possible is good, but the other side of it, of discriminating against disabled people once they exist is a difficult and probably wrong thing to do.

  Q192  Dr Iddon: Thank you very much. If I could turn to Maureen please. Maureen, if we could isolate the gene that caused Parkinson's Disease do you think it is right that people should be allowed to select embryos without that gene so that we could eliminate Parkinson's?

  Dr McHugh: Yes I do, but unfortunately that is not case. Parkinson's disease has many causes. There are many genetic and environmental factors so it is unlikely that will ever happen.[2]


  Q193  Paul Farrelly: Maureen, in your submission to the consultation you said that the 1990 Act needed reform with respect to PGD. How do you think it should change?

  Dr McHugh: I am not sure really, I am not an expert on these aspects. I think that it needs amendment to define the purpose of the genetic testing. We need to define who is going to benefit from the procedure, the unborn child or the child that exists already.[3]


  Q194  Dr Iddon: Perhaps I could also ask Patrick, we had an informal session at which Baroness Warnock was present and there is a feeling coming from people like Baroness Warnock that the 1990 Act is okay, it is a perfect framework to allow decisions to be made even about the new technologies. Would you agree that the 1990 Act should be left as it is according to Baroness Warnock's principle or do you think it should be changed?

  Mr Mahon: I recently read the HFEA submission to this inquiry and I think they were saying that they felt it was worth having another consultation. I think I would probably agree with that. The broad thrust of the 1990 Act seems to still be reasonable but many people have suggested that it does not take full account, unsurprisingly, of things that were not around in 1990. At minimum I would suggest that it is probably worth having a public consultation exercise to ask people whether they think it needs amendment. If the views that come forward do not appear particularly strong then leave it as it is but it may well be that there is enough evidence to suggest that it does need amendment.

  Q195  Dr Iddon: Where do you think are the biggest dangers that Parliament should really pay attention to in the developing technologies?

  Mr Mahon: I am not an expert on this but the case last year that the HFEA ruled on (on which there was a judicial review) of the parents wanting to have one child to help another child with a rare genetic defect, that seems to me to be a case where the legislation is somewhat grey and maybe that needs more thought.

  Dr McHugh: I was just going to say I think the status of the embryo is one aspect that needs redefining. We have technologies such as parthenogenesis and cell nuclear replacement and we need to define embryos so that they come under the protection of the HFE Act. Otherwise I think the HFE Act provides a pretty sound basis and we should only to amend it to take into account new technologies.[4]

  Chairman: Thank you very much indeed for coming along and giving us your views and advice and so on, it is very helpful. If you have any other ideas or things you would like to have said after the questions, please write to us. You will maybe think of things, "I wish I had said that," as I am sure we all do. Please write in, you are very welcome.





2   Note by the witness: If it were possible to deselect an embryo at the very early pre-implantation stage to exclude the possibility of Parkinson's disease, then I think it would be morally wrong to allow that embryo to develop further. The same would apply to any serious disease or disorder that brought real suffering. This is not discriminating against disabled people and it is not murder. It is simply trying to prevent disability, pain and misery. The stage of de-selection is crucial. The six-day-old blastocyst is not an unborn child. It is a potential human being and while it is given special consideration because of this, its termination either passively via de-selection as in PGD or in the process of extracting stem cells for research that might one day benefit countless individuals is more than justified. Back

3   Note by the witness: I am thinking here of the Hashmi and Whitaker cases recently in the news where the legal framework did not provide adequate guidance or allow flexibility for sensitive decision making. Wherever a selected embryo is allowed to implant we have to ensure that the rights of the now developing individual are taken into account and that embryos are not selected for dubious or frivolous purposes. Back

4   Note by the witness: Parthenogenesis is the activation of an unfertilised egg or oocyte via biochemical means so that it develops as a fertilised egg would but with two sets of identical chromosomes. Cell nuclear replacement also known as therapeutic cloning involves the removal of the nucleus of an egg or oocyte and its replacement with the nucleus of a mature cell or somatic cell. The fertilised egg, once activated is or would be a clone of the somatic cell donor. Back


 
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