By Alison Bryan | March 12th, 2008
Yesterday’s BBC Radio 4’s Today featured Lord Winston and Professor David Jones (note link will be inappropriate a week later, broadcast Tuesday 11 March 2008). Both discussed the Human Fertilisation and Embryology Bill, with specific reference to wanting deaf babies. Below is a transcript, with thanks to Neil Corry (shame on the BBC for not providing access, again):
John Humphries: As far as you’re concerned Lord Winston, your reaction to what that man said on this programme yesterday, accepting that there will be very few cases where this choice would have to be made.
LW: I think there was a misunderstanding there, because I think that no government, and certainly not this one, is intending to enforce screening on embryos for particular individuals. And the implication there was that this person would have the screening. I think that there really is another misunderstanding that the screening process is very complex, and quite invasive and may carry risks, and therefore would not be done for trivial purposes. And the idea of deliberately screening an embryo to ensure that you had a deaf child is not something in anybody’s mind –
JH: (interrupting) But you MIGHT screen an embryo so you DIDN’T have a deaf child…(CAPS, his emphasis)
LW: On request of the parents, on might
[talking together]
JH: Exactly.
LW: But parental autonomy would be very important there.
JH: And you, Professor [David] Jones, are opposed to the idea of screening, full stop.
DJ: I think one thing that I would welcome in the current bill is the decision not to have screening for sex selection. And I think that it’s interesting if we can compare that to the selection of a deaf child, or a hearing child. We say, er, we do, we’re in favour of, of parental choice and parental responsibility, but a parent shouldn’t say, “Because I want, er, a girl rather than a boy, or a boy rather than a girl, I have selection.” In the same way, I think, if we really think that a deaf child, once born, is equal as a citizen, we shouldn’t say, “I will select OUT a deaf child.” We shouldn’t say, “I will select FOR a deaf child.” We should say, “I will make the best provision for deaf or hearing children when they’re born.”
JH: Lord Winston?
LW: We live in a pluralistic society, and the issue surely must be that we should try to accommodate that society in the best way we can. And, therefore, the key thing must be the [unclear word] the people that suffer these diseases, and really, I think the argument is being diverted from the real issues. The real issues are that pre-implantation diagnosis should be used, in my view, for those diseases that kill children very early on, and that’s where they are being used. And, on the whole, nobody’s suggesting seriously, clinically, that we should start screening for deafness one way or the other. As far as I know that’s never been done, and indeed most causes of deafness wouldn’t be suitable because they’re not –
JH: (interrupting) But you are saying that screening before implantation to screen out, er, certain conditions.
LW: Only on request, and those requests come from parents who have already lost a child. What normally happens – and they’re pretty rare, there are about 6000 diseases but very few of them are very common – people have lost a child at the age of two, three, or four, they realise they have a genetic defect, they don’t want to go through that terrible trauma again, and they therefore request to have IVF with a view to have an embryo randomly selected but which does not have that specific gene defect.
JH: And are you happy with that Professor Jones?
DJ: Erm… I’m not happy with that. Clearly, people who have suffered in this way, they want to minimise their, their chances of the same thing happening again, and I completely understand why.
JH: They want to eliminate it, don’t they, if possible?
DJ: Yes, but the elimination of all risk is not something that is possible. But I think that the…, I don’t think it’s actually, er, I think that the [unclear] recently made a decision about also selecting for later onset conditions, and not only for conditions which are there at birth. I think there is an issue of looking towards, erm, the selection of children in general, and thinking of the child as something which, the characteristics of the child which is selected. I think there is an issue here and obviously these sort of cases of a child who died this early, this is, these are the cases which are, which cause us the most heartache, but we’re still on a continuum which is about exercising control over a child by selection, saying that there will be certain embryos that we will throw away, or that there are certain features we will throw away. That’s the problem I have.
JH: But why should there not be that selection, if the result of it is a child that is not born with some dreadful disease? Isn’t the future wellbeing of the potential child what is paramount here?
DJ: I think there is a difference between if you HAVE an individual, how to best make the future for that individual, how to improve the health of that individual or treat the individual. I think that’s one sort of thing, and I think it’s a different thing for –
JH: In other words, if the child has already been born, then you –
DJ: I would say ‘already conceived’, because there is, er, and here obviously, there is a plurality of opinion about this, about how early we will push it, and for some people, er, it’s when the child is born. Some people would say, if it’s going to be disabled then we shouldn’t treat very new infants who are very seriously handicapped. We’re not there in society and I am very happy about that. Some people would say, as a foetus, you can have, erm, abortion for reason of disability and we have that much later for other abortions, I think that, myself, is scandalous. But I think that for all these technologies, even for PGD, sorry, even for screening embryos, we are talking about, saying this embryo has a flaw, we will throw it away. I think that’s the problem that I have. It’s the, it’s the notion of selection and de-selection, it’s the destroying, not that you want to make the best for the ones you’ve implanted, it’s the attitude towards what is able to be cast aside.
JH: Lord Winston, throwing away an embryo…
LW: Well this is Professor Jones’ assertion.
JH: Well, it happens!
LW: Well I do sympathise with his view because, of course, the Catholic church actually doesn’t approve of IVF at all, and so he has a problem here, as he doesn’t even approve of contraception. These are both methods of, both technologies that are widely used in our general population, and broadly accepted by people.
JH: There is a difference between contraception and throwing away – to use –
LW: (interrupting) No, because IVF wastes embryos all the time, as does nature. About 18% of embryos normally implant, and that’s what happens in in-vitro fertilisation, too. And another point that Professor Jones has omitted to mention is that nature herself, screens for these so-called defective embryos…
JH: Yes, but that’s nature doing it.
LW: Well, the difference about nature helping, being helped by medicine seems to be appropriate. What happens with many of these genetic disorders, if not all of them, is that most of these embryos do not survive implantation. What pre-implantation diagnosis does is to help that process more effectively –
JH: So you’re aiding life, Professor Jones, rather than discarding life.
DJ: What [sighs heavily]… It is true that nature can be very cruel, and it’s true that the, the, basically the earlier you go in life, the more vulnerable life is. Obviously newborn children are very vulnerable, are [couldn’t hear] are very vulnerable, obviously the embryos are at the most vulnerable stage, and many of them will not survive. I don’t think that’s an argument for saying, “Because many wouldn’t survive, WE will decide who survives. WE will decide what doesn’t survive, on the basis of certain conditions where it’s better not to be born with.”
JH: A very quick final though, Lord Winstone. We’ve run out of time. Is it a slippery slope?
[TALKING OVER ONE ANOTHER, VERY BRIEFLY]
LW: It’s a slippery slope, but with speed limits. You know, you have arbitrary decisions and, of course, you have regulations. But I think that there’s a nonsense here, there’s a notion here that people like myself don’t want to see society properly caring for people who have diseases which are produced genetically. That’s not true. But, unfortunately, Professor Jones has not seen the stress and severe these families suffer. And once you’ve seen that, you understand that they have a decision that is difficult to make, which they’re taking, largely, for ethical reasons. That’s the commonest reason people have PGD [?], pre-implantation diagnosis.
JH: Lord Winston, Professor Jones, thank you very much.
JH = JOHN HUMPHRIES, LW = LORD WINSTON, DJ = PROFESSOR DAVID JONES
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