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THE MORAL MAZE
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The Moral Maze
Wednesday 8.00-8.45pm
rpt Saturday 10.15-11.00pm
Michael Buerk chairs a live debate examining the moral issues behind one of the week's news stories: combative, provocative and engaging.
This week
12 March 2008

Transcript: The Moral Maze Wednesday 12 March 2008


PRESENTER: Michael Buerk

PANELLISTS:

Melanie Phillips
Sarah Dunant
Michael Portillo
Ian Hargreaves

The Moral Maze this week asks 'whose baby is it anyway?'.

How far should parental choice be allowed when it comes to selecting embryos for IVF? Some deaf parents and disability charities say they're being discriminated against because the Human Fertilisation and Embryology Bill, which is currently going through Parliament, would make it illegal for parents undergoing embryo screening to choose an embryo with an abnormality if healthy embryos exist.

Concepts of equality and parental choice sit uneasily when the result means deliberately creating a baby with a disability. The science in this field is becoming increasingly powerful and so those choices will only multiply, but how is that changing our attitude and understanding of what it is to be human?

MICHAEL BUERK
Good evening. This is the week when we come face to face with one of the problems with playing God and paradoxically it is deaf people who are making the most noise about it. The row is over IVF a wonderful medical technique that has given hope to thousands of otherwise childless couples but it has also enabled us to select our own children to make choices about our babies and so in a small way to play God. The Human Fertilisation and Embryology Bill is trying to chart a path through this moral mine field. One of its measures would be to make it illegal to choose an embryo with an abnormality if a healthy one was available. Most of us would think it perverse to want to do so. Not the deaf or at least deaf parents and activists on their behalf. Some of them actually want a deaf child who they think might fit better into a deaf family. They, like many other disable people, are offended at the idea of embryos with their conditions being as they see it weeded out. It is a very difficult argument which goes to the very heart of what we think about disability and the disabled but more than that what choices is it morally right to make about new human lives and who should make them? That’s The Moral Maze tonight. Our panel; Melanie Phillips, Social Commentator on the Daily Mail, the writer and critic Sarah Dunant, the former Cabinet Minister Michael Portillo and the media expert Professor Ian Hargreaves.

Ian Hargreaves is this primarily a question for parents’ deaf ones in this case, for Doctors or for the law?


IAN HARGREAVES
Well I think it is a very tough question. The way I would cut it is that parenting is itself an awesome, moral responsibility. Parents, with medical advice, are the only people who can make this choice so I don’t think it is a place for hard law so I think in principle the argument that some of these deaf parents and people are making is a good one but I find it difficult in practice to see how a responsible parent would choose disadvantage for their own child.

BUERK
Melanie Phillips?

MELANIE PHILLIPS
Well I think the pace of medical technological progress is creating a set of absolutely insoluble dilemmas. We simply cannot solve these things that technology is throwing up. We don’t have the moral codes to allow us to do so any more. Personally, I think that the idea of deliberately bringing a child into the world who is disabled is grotesque. However, I would also be very much against testing, screening out disabled embryos because I think that is eugenics.

BUERK
Michael Portillo?

MICHAEL PORTILLO
I don’t think the law really has any useful part to play here but I do think that the decision by parents to bring a deaf child into the world deliberately is a position that I find morally very hard to defend indeed.

BUERK
Sarah Dunant?

SARAH DUNANT
It’s a very tough question indeed and I think we have to do it case by case and issue by issue because that is how morally difficult it is. I certainly think this Bill has got some problems and it is the combination which gives IVF parents the right to screen out all abnormality such as deafness while make it positively illegal for a deaf family to choose a deaf embryo which does send out a message that being deaf, which is not a life threatening condition, is somehow not acceptable and I don’t feel comfortable with that because I thought I lived in a society where we were struggling to treat disability as difference rather than inferiority.

BUERK
Panel thank you very much indeed. Our first witness is Dr Steven Emery who is British Sign Language Associate of Herriot Watt University in Edinburgh. He is himself deaf and because we needed an interpreter to talk down the line with him in Edinburgh we recorded what he had to say which was actually spoken by the interpreter Catherine King. So just before we came on air I asked him why he wanted people to have the right to choose to have a deaf baby over one with hearing.


DR EMERY (VIA INTERPRETER)
I think what will happen from that is that it will allow any couple who want to have a hearing child to choose a hearing embryo but it does not allow the same equality of choice to deaf parents who wish to have a deaf child so it is an inequality enshrined in law. And what we are really trying to say is either nature takes its course and we don’t know what kind of child develops from the embryo that is implanted or we allow this to say there is no choice you must have a hearing embryo implanted because what is happening here with this clause is deaf parents will be forced to accept that a deaf embryo must be discarded over a hearing embryo

BUERK
Michael Portillo your witness?

MICHAEL PORTILLO
If deaf parents choose to have a deaf baby that would seem to me to be for their benefit and not in the interests of the child how do you react to that?

DR EMERY (VIA INTERPRETER)
I think you need to set this in context which is why I made the point about the clause itself. The clause itself focuses on hearing people and what it is essentially doing is banning deaf choice and what I am saying is if you allow for hearing choice within law then you need to allow for deaf choice within law and that is the context we are working with this clause. I am not saying that deaf people should be creating deaf children but the choice should be there or not banned that is the essential point they should not be banned from making such a choice.

MICHAEL PORTILLO
But continuing with comparisons why is choosing a deaf baby any different morally speaking from choosing an athletic child or a beautiful one. It seems to me it is the same moral issue.

DR EMERY (VIA INTERPRETER)
To a certain extent I agree with you that the point about choosing a hearing child is a moral choice and I think that this debate has become skewered in its focus it has become skewed towards the deaf community and the deaf choice rather than the morality of this kind of choice. If we look at the moral issues related to this clause it is muddy, muddy water that we are wading through. I think that what we have here is a desire for some deaf people to have a child who is like themselves and deaf. The desire is there and we are not denying that, the desire can be there with deaf parents but that is a very different argument to actually choosing to create a deaf child which is a tiny percentage of people in the world. I would say less than 1% of the deaf community would choose to create a deaf child but nobody talks about hearing people choosing hearing children over deaf children

MICHAEL PORTILLO
I said I understand what you mean about equality and inequality. Do you think also that hearing parents should have the right to choose a deaf child or is this a privilege that should be preserved for deaf parents?

DR EMERY (VIA INTERPRETER)

OK that’s a very interesting point I am not making a difference here between hearing parents and deaf parents. It can be parents full stop it’s parents and it’s not about having a deaf child or a hearing child it’s about having a child. Either I wonder if we should just not have a choice at all and let nature take its course

BUERK
Melanie Phillips?

MELANIE PHILLIPS
Isn’t it the height of perversity that refusing to deliberately bring a disabled child into the world is considered by yourself to be discrimination?

DR EMERY (VIA INTERPRETER)
By the height of perversity do you mean you are referring to deaf people or disabled people as a perversity of nature is that what you are referring to them as?

MELANIE PHILLIPS
No

DR EMERY (VIA INTERPRETER)
Disability is out there all the time it is a natural phenomenon within the human race.

MELANIE PHILLIPS
Excuse me you have misunderstood. I am sorry to interpret you but I must make it clear that I was certainly not saying that deaf people are perverse what I was saying was that your argument might be considered to be perverse your argument being that refusing to create a disabled, deaf child is discrimination. I am suggesting that argument is perverse.

DR EMERY (VIA INTERPRETER)
Well you have to remember where this debate has begun. It comes from the clause and this is a reaction from the deaf communities to that clause and that is where the argument is coming from

MELANIE PHILLIPS
Do you think that other people with other disabilities should have the same right to choose children with the same disability as themselves for example people who suffer from epilepsy should be able to choose children who are epileptic or people who are blind should be able to choose people who are blind? Do you think that should be their choice too?

DR EMERY (VIA INTERPRETER)
My personal view on this and again I have a sense that it should be a natural choice. This is not something the deaf community are asking for this kind of creation, this has come from the clause this debate has been sparked by the clause itself and if it was possible for us to have a kind of perfect world we wouldn’t need this kind of debate. I am saying that either we should have no choice on which embryos are allowed to be implanted and to grow or we should be allowed choice for everyone


BUERK
Ian Hargreaves?

IAN HARGREAVES
Do you think that parents knowing that they have the opportunity to screen out a gene that would cause a child to have a very serious illness like cystic fibrosis could ever be morally justified in proceeding with that act?

DR EMERY (VIA INTERPRETER)
Can I just clarify that question then? I guess I am asking what you mean by a serious illness. How do we define it?

IAN HARGREAVES
Well I gave you one example – cystic fibrosis. But you can substitute any other. Something which is actually an illness which causes huge pain and distress um that type of example.

DR EMERY (VIA INTERPRETER)
Well and again I am back to how we are defining this. The definition is going to be important here. What do we mean by suffering, what do we mean by distress? If something is life threatening you know there is a risk of fatality because of this gene then I think research needs to be ongoing and I wouldn’t have personally an objection to what you are suggesting but I do think that we need to be very careful about how we are defining serious illness and who is making the judgement on what a serious illness is. Is it the people who themselves have these illnesses. They need to be involved in this debate. And this is what is happening with deaf people that they are not being allowed to be independent enough to make this decision or to be in this debate.

IAN HARGREAVES
I am sympathetic to your core point of view but I wonder how far you take it even with deafness within the family. If there is a family of 4 people, 2 parents, 2 children all of them deaf and at the age of say 6 one of the children has the opportunity to have medical treatment that will cure the deafness. How does that look as a moral and well being issue to you within that family?

DR EMERY (VIA INTERPRETER)
OK I think part of why the issue has actually been raised and why the deaf community has been brought into this is it’s kind of easy to look at deaf families those who have a genetic deafness, I guess from that point of view it seems that deafness is a natural part of our society that we have families like that out there but I think what we are saying is a child who…. a couple who want one more child and this clause now raises these issues for them it is a private decision and a private discussion for that family to be having and because the clause is now in place there is no discussion, it’s not private, it won’t be available to them

IAN HARGREAVES
But there is a related moral issue. Would a family ever be right to deny a cure for deafness to one of their own children?

DR EMERY (VIA INTERPRETER)
Hmmm I guess that is a moral issue definitely and we can’t really relate that to rights I don’t think. There’s a context there and I think that we are looking here at the rights in the context of a family who are genetically deaf, or have a tradition of being deaf. Most deaf people would never even contemplate the idea of a cure for deafness because for them their life is natural, for us our life is natural we just move on with our life so we wouldn’t contemplate the idea of a cure.

BUERK
Dr Stephen Emery and the translator Catherine King speaking just before we went on the air. Our next witness is Prof Julian Saveluscu who holds the Chair in Practical Ethics at Oxford University and he is on the line from Oxford now. Prof Savulescu do you think it is right for us if we can to select the normal over the abnormal?

PROF SAVULESCU
I clearly think it is right to select the normal over the abnormal where the abnormal is associated with a lower prospect of a very good life. I think there is no doubt that conditions like deafness are compatible with the best of lives but I also think there is no doubt in the way the world is currently constructed that such children face obstacles that hearing children don’t face

BUERK
Would you go further? Do we have a responsibility to try and improve, to select for the best if you like whatever that may mean?

PROF SAVULESCU
Biology is increasingly showing us that large parts of our lives are in part determined by our genes so not only does whether we have cystic fibrosis, or deafness or asthma contribute to how well our lives go but whether we are able to read properly, do arithmetic, tend to problems or even how happy we are our ability or women’s ability to experience orgasm has a large genetic determinant. So in so far as we can provide our children with the best opportunities in life I believe we should also, just as we select healthy children select children with better prospects of better lives.

SARAH DUNANT
Prof Savulescu I am going to avoid asking you about the genes for better orgasms. It seems to me that what you are saying is that we should use genetics to make people happier and have more fulfilled and successful lives yes?

PROF
Absolutely.

SARAH DUNANT
How would you as an able bodied person know how happy, fulfilled or successful a disabled person’s life is?


PROF
Well it of course depends on how one defines disability. In my view any condition of our psychology or our biology which reduces our chances of having a good life constitutes a disability and so far we have only been able to see obvious disabilities like paralysis or blindness but the human genome project is now showing us that all of us have genes or biology that makes it more difficult for us to achieve a good or the best life so, as I have mentioned, the ability to read or attend or even whether we are prone to criminality is going to be partly

SARAH DUNANT
So we are also looking at hidden disabilities here?

PROF
That’s right. I think we will soon find that we all have various disabilities of one kind or another.

SARAH DUNANT
OK well I suppose one of the kind of key nerves at the moment within society would be the proclivity towards sexual violence or towards paedophilia. Can you imagine a situation where we genetically are able to get rid of that and that would be desirable for society?

PROF
Well we are halfway there. Paedophiles in California are offered, as an option to imprisonment, chemical castration with hormones which alters their biology and their drives. It is only a small step from those pharmacological manipulations to direct genetic manipulation

SARAH DUNANT
OK can I take you back then some 30 or 40 years to British society and suggest that at that point we might have been able to discover a gay gene and parents would have been queuing up such were the attitudes towards homosexuality at that time to get rid of embryos that might have the gay gene. With the medical profession we might well have been able to manipulate it out by now.

PROF
Yes it is very important to draw a distinction here which is central to the debate between the law and morality. The proper place of law is as I think one of the panelists said is to prevent harm and not merely to enforce social disapproval so one of the great advantages to give people reproductive freedom is that some people would choose to eliminate the gay gene others would actually choose it.

SARAH DUNANT
OK but you must agree it is a dodgy business isn’t it because it is cultural as well as medical or final, this decision as to what you see as correct or happy or successful

PROF
It is indeed a cultural issue but I think we can have a sensible debate after all we base our educational systems and our parenting practices on our view of what is a good life for our children. These are not completely mysterious and the same sorts of values and principles can operate at the biological level. Indeed education alters our biology

SARAH DUNANT
Well I am just very glad

BUERK
Melanie Phillips?

MELANIE PHILLIPS
You said earlier that we all have disabilities so in your perfect universe or pursuit of perfection where is this going to end?

PROF
Well it will actually end by transferring power from nature to families and couples to make decisions about the kinds of children they wish to bring into the world. There will be variation because people have different values. We will in the end see whose lives go better. I am sorry

MELANIE PHILLIPS
I am so sorry I didn’t mean to interrupt you. Aren’t you therefore in danger of recommending a ghastly homogenized universe in which you homogenize humanity and in fact destroy the essence of humanity which is randomness.

PROF
Well I don’t personally believe that randomness has any value in itself. I mean tell the victim of a rape that random genetic variation and genetic difference is a good thing to preserve. There are some things that are clearly good and some things that are clearly bad and there is a huge grey zone. I think we should be promoting those things which are clearly good and discouraging or even eliminating those things which are clearly bad.

MELANIE PHILLIPS
But this is a very post modern, post human philosophy if I may say so. I mean isn’t the essence of parental love that one gives love unconditionally to one’s children who are randomly given to us and if one is making that love conditional on some pursuit of nirvana like perfection then you are destroying the whole basis of humanity and love

PROF
I love my children unconditionally but none the less I give them fish oil tablets probably on the false belief that it will somehow improve their cognitive abilities. I don’t see any necessary disconnect between unconditional love and indeed what I see as a virtue of caring about how our children’s lives go and indeed influencing their biology to promote that.

MELANIE PHILLIPS
But surely there is every difference in the world between nurturing a child on the basis of the random characteristics that child has been given because you want the best for that child and giving the child the impression or giving the rest of the human race the impression there are people who you think shouldn’t have been born at all. You are surely building into your philosophy the idea that people’s lives are worthless if they don’t measure up to your standard of perfection


PROF
No that’s not true at all. When someone gives their child Ritalin in an attempt to improve their education they are doing something biological. If indeed they are directly able to genetically manipulate that characteristic I don’t see a moral difference. This is hardly making a statement that people with attention deficit disorder have lives that are not worth living or indeed should be eliminated it simply is saying that some conditions of our biology affect how our lives go

BUERK
Professor SAVULESCU thanks very much indeed for joining us this evening.

PROF
My pleasure.

BUERK
Our next witness is Richard Rieser from the Charity called Disability, Equality and Education who I think had polio as a child. Would the world be a better place Richard RIESER if nobody was born deaf or with Downs Syndrome?

RICHARD RIESER
I don’t think so I think it would be a less of a good place because that very diversity that disabled people bring to society gives the mix that we are and I think the previous speaker seemed to be moving towards some sort of homogenized humanity which I think would be a disaster. you only have to think back in history and if the technology we are beginning to have now with the Genome project and so on had been applied how many people would we have got rid of. For a start we wouldn’t have any Beethoven symphonies, we probably wouldn’t have modern physics from Einstein and certainly wouldn’t have Stephen Hawkin and so on. So one of my arguments is having grown up as a disabled person, I had polio when I was 9 months old is that your disability forms part of your character. There are many many people who have been leaders in society throughout history, Julius Caesar onwards who were disabled people and their disability is what forms their character. It develops them.

BUERK
Ian Hargreaves your witness

IAN HARGREAVES
Nobody can deny the truth of the point that you just made but does it follow from that that the polio that you suffered should not have been subject to when it was discovered a mass immunization programme which has more or less eliminated it.

RICHARD RIESER
No it was eliminated in the rich world. I have just come back from Africa and it is still rife there and in India

IAN HARGREAVES
Yes but it – in this country. Are you opposed to what the previous witness called pharmacological manipulation which is capable of very severely attacking diseases like polio and many other diseases? What’s the difference?


RICHARD RIESER
The difference between that and…?

IAN HARGREAVES
Genetic medicine.

RICHARD RIESER
Well right there is a difference because one is determining that people with a range of impairments will not be born at all that we will eradicate that, the child or the person who develops an impairment is already sense and alive and therefore there is a difference in my view.

IAN HARGREAVES
So when the first witness a deaf person told us that he couldn’t really imagine why in a deaf family that that family would want the deaf child to be cured of deafness do you agree that… is that the moral position you would imagine yourself taking?

RICHARD RIESER
We have taken that position. My wife had a late pregnancy when she was 40 and she was offered amniocentesis. She said why would I want to know if I am going to have a disabled baby because the assumption would be that I would then have a termination why would I want to kill a disabled baby and so that was the decision that we took. It shocked the obstetrician who hadn’t come across that view very often.

IAN HARGREAVES
Well let’s go a bit further down that road. I mean the fact is that screening for Down Syndrome is now very widespread and the couples or women who are offered the choice when that condition is detected overwhelmingly I think about 80% of them choose not to go ahead with the pregnancy. What is your view of the moral judgements that lead to that statistic?

RICHARD RIESER
OK well it’s 80% here and I believe it is 90% in the United States so high levels of termination that go on. My concern is the overwhelming pressure to terminate if a defect is found in the foetus without actually giving people the chance to see what life is like for a Downs Syndrome child

IAN HARGREAVES
But why shouldn’t women be allowed to make that choice?

RICHARD RIESER
They should be allowed to make that choice

IAN HARGREAVES
Who is better placed to make that choice?

RICHARD RIESER
I believe they should make that choice. I have always supported a woman’s right to choose however I think it needs to be an informed choice and so often people are only given the prejudicial view of disability in our society rather than the fact that people with Downs Syndrome can go on to be musicians. I know people who have got university degrees with Downs Syndrome now. You know it is the perception of the impairment that is leading to the termination rather than the reality of living the life of a disabled person and indeed we are still living our lives as disabled people very much against the odds because we still have a lot of discrimination to get rid of. Once that has gone life will be so much better for disabled people

BUERK
Michael Portillo?

MICHAEL PORTILLO
I know of a condition called EB which is a skin condition where the skin doesn’t adhere to the body and the children who have it suffer very very terribly and it is a genetic thing so parents are given the opportunity before they have a second child to screen andmake a decision whether to proceed. You are not against any of that is that right?


RICHARD RIESER
No I am not taking a view against that but I am, I am worried let me put it this way I am worried about the clauses in paragraph 14 of this Bill to more or less eradicate any embryos which have any impairment and I think that is a very wide and over arching clause which is causing a great deal of concern not so much in the deaf community and there is an issue around the deaf community which I am going to bring up in a minute but amongst much wider groups of disabled people. For instance let me give you an example. People who genetically have dwarfism in their family, for instance, there is a whole culture around that and many people would want to have children with a similar condition as themselves

MICHAEL PORTILLO
I understand that I just want to test the consistency of your position because if your position is as I understand it making decisions to eliminate embryos that have flaws is, as it were, insulting to disabled people I don’t quite understand why you wouldn’t be against it altogether. How is it that you think that sometimes parents should be allowed to choose to do just that?

RICHARD RIESER
I’m for people making an informed choice. I am not saying… but what is happening in the Bill is to say there is no choice and I think that is the problem and I think the first speaker was making the same point. I believe that we are in a society where the government have only just, the very same government that have framed this Bill and the Dept of Health have just introduced the duty to promote disability equality. We have disability equality after birth but before birth we have disability inequality and I think that is a bit of a problem


SARAH DUNAN
Richard, can you imagine a situation where there are fewer disabled children born and therefore we could spend more time, money in caring for them or are you worried that by reducing the numbers the pull is always towards some kind of unstoppable achievable perfection?

RICHARD RIESER
I think it is the latter argument and I think you know we are only just 60 years past the point when you know more than 1 million disabled people the latest research is suggesting were murdered by the Third Reich and the scientists who operated under that and I have to say that many of the views which are still around in the new eugenics movement have an unbroken line back to that because many of the people who did that were never brought to trial. Only 13 doctors were brought to trial.

SARAH DUNAN
So right your position is that we actually do need disability within society because it teaches us something it makes us richer

RICHARD RIESER
We will never get rid of disability in society even if you get rid of congenital impairment, that is impairments people are born with, we will acquire impairments because of the nature and chaotic nature of our society and it will always be so. And therefore, but there is moral issue that if we build this up at the birth situation and make it such a negative thing it makes life much more negative for all disabled people

BUERK
Richard RIeser thank you very much indeed.

Our last witness is Professor Marcus Pembury who is the Chair of the Progress Educational Trust and the Meritus Professor of Paediatric Genetics at the Institute of Child Health at the University College London – that must make for a pretty big visiting card I should think (LAUGH)

I will ask you the same question that I asked the previous witness do you think it would be a good thing if fewer people in fact nobody was born disabled?

PROF PEMBURY
I think it would follow that would be the case if you could have the technology that would give parents would give parents what they want.

BUERK
No I asked you if it would be a good thing or not


PROF PEMBURY
Broadly speaking the less disability there is it would be a good thing and I will tell you why because my experience from 40 years in clinical genetics is that we have a disconnect between the ability to love and cherish somebody with a disability, a child with Downs Syndrome for example, to celebrate their achievements but families where this has happened have then come, I have seen hundreds, who then ask to make sure it does not happen again. There is no connection really between the ability of parental love to really rise over the shattered dreams that many of the births of these children are, there is no connection between that and um the desirability of reducing disability in itself.

BUERK
Melanie Phillips?

MELANIE PHILLIPS
You are motivated by the noblest of intentions which is to eradicate harm and suffering.

PROF PEMBURY
No not to eradicate no.

MELANIE PHILLIPS
To minimize it

PROF PEMBURY
No it is to actually help families who are at a genetic disadvantage to live and reproduce as normally as possible.

MELANIE PHILLIPS
To avoid their suffering and the suffering of any children coming into the world.

PROF PEMBURY
It is to help those people with a genetic disadvantage. I am not trying to reduce the birth instance of genetic disorders as the primary goal. That is a consequence of helping these families. There was a view in the past that the goal of clinical genetics was to reduce the birth incidence. I can tell you that if you just give them the genetic risk when it is high but not any tests they are frightened into not having further children you have achieved your reduction but you are not helping them and it is helping that I do.

MELANIE PHILLIPS
I am trying to suggest although you do seem to be rather resistant to the idea that your motives are good but nevertheless let’s pass lightly on from that

PROF PEMBURY
I aim to help families and it is for them to decide whether they are good or not

MELANIE PHILLIPS
OK When we look specifically at whether genetic screening is good isn’t it the case that genetic screening done for the noblest of motives produces an inevitable commodification of human life?


PROF PEMBURY
No that is not necessarily so. You have got to distinguish between genetic testing and genetic screening. Genetic testing is the term that we use in like an ordinary medical consultation, a family have a problem they seek help in solving that problem and you provide very specific, family specific genetic tests which may be pre implantation genetic diagnosis or pre natal diagnosis

MELANIE PHILLIPS
This is very disingenuous isn’t it because the testing leads to screening. The testing leads to destruction of embryos which are carrying a gene which will produce a disabled child for example

PROF PEMBURY
I don’t quite understand – I was trying to answer you were saying about genetic screening. Genetic screening is the term we use when the public health services decide that a particular genetic test should be offered to all people in pregnancy

MELANIE PHILLIPS
In order that they can choose whether to dispose of that embryo

PROF PEMBURY
In order for them to make a decision about whether to continue with the pregnancy or not if they were affected. Most people take the screening to reassure themselves that they are not so affected.

BUERK
Michael Portillo?

MICHAEL PORTILLO
If deaf parents came to you and said they would like to select a deaf embryo would you support them in that decision?

PROF PEMBURY
No, I wouldn’t, purely on the basis of saying that medical genetic services are there to help families at genetic disadvantage. If they don’t see deafness as a disadvantage, a genetic disadvantage then really there’s nothing that the genetic, clinical genetic services can offer them and the good thing about the current Bill drafting is that it makes it quite clear that the idea is to avoid harm. It is not to give people choice or social selection and so on and quite simply if a deaf family would prefer to have a deaf child but weren’t certain about it by having babies naturally one would basically say that they were wanting to select for a preferred outcome and that is not the role of….

MICHAEL PORTILLO
So to be clear before the Bill become law when you say you wouldn’t support those deaf parents in having a deaf embryo, deaf child that would mean they wouldn’t be able to do it because your lack of support would make it impossible

PROF EMBURY
No if both parents are deaf there’s maybe quite a high chance that they would have a deaf child quite naturally

MICHAEL PORTILLO
Yes indeed but make it impossible for them to make that selection

PROF EMBURY
It would in effect because that is the nature of the genetic services. There are Medical Acts and they are there to prevent harm and not to choose

MICHAEL PORTILLO
It makes one wonder if the law is necessary at all.

PROF PEMBURY
I don’t think this clause is necessary. We have had 15 years without this clause. We have had the welfare of the child back up in the Bill and I think we should modify this clause because I think it has stirred up a whole lot of things unnecessarily

MICHAEL PORTILLO
By the way whose interests are paramount? Whose happiness is paramount? Is it the child or can the family be taken into account. I mean the family may be made very happy by having a deaf child

PROF PEMBURY
I think with genetic conditions you can’t really completely separate off the happiness of the future child from the parents or the family because genes in some way are shared by the whole family but the way the Bill is drafted, the way the medical services are at present we are not offering choice for tracer, not the way Salenescu is suggesting that we choose for this and that.

SARAH DUNANT
Prof Pembury I think it is very interesting what you are saying because what you are suggesting is that this is dual partnership between nature and nurture so if there is a genetic problem it can be overcome in quite a creative way by a family who is willing and able to support it

PROF PEMBURY
No, I am not quite sure why you put that into my …….most families who come for genetic help, genetic tests and so on are wanting, they have a specific anxiety in the family history or something and wanting help to avoid transmitting that serious condition as they see it to their children. We do that to help them. There is not doubt that if such a child were born into the family anyway that many of them find it in themselves to increase the parental investment and make something of it.

BUERK
Prof Pembury thank you very much indeed.
Sarah Dunant do you think going back to where we started all this that there was a definite sense of offence as well as resentment coming out of some people in the deaf community and other disabilities. Does this idea of choosing against disability amongst embryos do you think it says something unacceptable about existing disabled people


SARAH DUNANT
I think what it says it something very dodgey about choice and choice is the kind of semi religious worship in our society in all kinds of ways and I think it is very dodgey actually because apart from anything else choice is also about money in some ways. And certainly people going through IVF for a long period of time will need money.

BUERK
Yes we are not talking about choice we are not talking money. Disabled people are saying that the idea of weeding out embryos with disability it is saying something nasty about us. Do you think that is true?

SARAH DUNANT
Yes but Michael what I am saying is that if you give one set the choice and if choice is the very powerful thing, if you give one set a choice to absolutely weed out the embryo then you are going to have disabled groups coming back and saying we therefore have a choice also which we are now being denied in law.

MICHAEL PORTILLO
I thought Prof Pembury made a very good point in the end when he said that he had observed again and again cases where marvellous people have been born with disabilities and they have enjoyed marvellous relationships with their parents and yet still the parents make the choice that when they have a second child or whatever it may be that they would prefer to screen and avoid it being repeated and they are people who are very well informed about the disability and obviously don’t regard it as an insult to disabled people

SARAH DUNANT
But Michael what we don’t know about that is where in that society’s role is in terms of the help and support they have been given which is something we have left out of this debate tonight and is in fact a very important factor in how people deal with disability

MICHAEL PORTILLO
But I don’t think it is in any way fundamental to the moral issue and very often people who are making that choice have been well supported but they are making that choice. They do not regard themselves as insulting people who are like their first child

BUERK
Ian Hargreaves?

IAN HARGREAVES
Choice is the essence of this and Richard Rieser the Disability Campaigner agreed that is was a matter of parental choice. He wished I think reasonably to lay an emphasis on the informed nature of that choice but what has happened here is that the government has blundered into a piece of legislation which has I think, Stephen Emery the first witness who spoke through his interpreter is right, it is creating an inequality enshrined in law and I think that that is morally offensive to all sorts of people and I think that what Prof Pembury told us was that experienced genetic paediatricans like himself do not need this law. This work can be done perfectly well without another blundering piece of legislation


BUERK
Melanie Phillips?

MELANIE PHILLIPS
I think the idea that it is somehow unequal to prevent people from having the ability to deliberately cause harm is taking our culture of rights to the most perverse and quite grotesque

BUERK
But there was Melanie a philosophical point here from the first witness and the third witness broadly speaking for the deaf and the disabled that somehow deafness wasn’t a disability which I find with all the sympathy in the world you know it is a disability isn’t it?

MELANIE PHILLIPS
It is indeed, but I have considerable sympathy with Dr Emery when he complains bitterly about the weeding out because I think that is an appalling thing when you are doing it not just with deaf people but with disability generally. I think this is the road to eugenics

BUERK
But you are not going to argue like Richard Rieser said that it is all part of the rich tapestry of life and it improves our society


MELANIE PHILLIPS
Absolutely not disability is an affliction one would not wish it upon anybody, one should not bring children into the world however people are always going to be disabled as somebody said I think Richard Rieser said we are always going to have people who are disabled and if we screen out disability at the embryo stage quite apart from any other considerations one might have about this one is going to create a society in which we are wholly intolerant of imperfection and that is deeply dehumanizing to the core

SARAH DUNANT
I agree with that and Richard Rieer make a very good point of that that if you have that level of disapproval at birth level then it makes life much more difficult. But actually it seems to me that Stephen Emery’s point was very clear which is he would prefer there actually to be no testing at this stage so a randomness would continue to exist for a gene that is not life threatening

MELANIE PHILLIPS
I have great sympathy with this idea of letting nature taking its course unfortunately we have now created the technology that we are playing the God and this is what is stirring up Prof Pembury who I don’t think was prepared to accept the consequences of his own argument. He was talking about testing, when I talked about screening therefore he bridled but the point about testing is that you should be able to screen out.


IAN HARGREAVES
But if we turn our back on this particular current of medical progress we will undoubtedly add greatly to sum of human suffering. Those that are taking the position that Melanie is outlining have to answer is if you are not going to place the moral responsibility on parents to choose this to make the choice, who is going to make the choice? You are going to have to start banning, drawing lines and I don’t think that is the right way to do this, the right way to do this is to create the framework and let the parents choose with the kind of medical advice that they get from people like Prof Pembury.

MICHAEL PORTILLO
It is more than medical advice apparently that they are getting from Prof Pembury. I mean the Bill does appear to be a blunder but one reason why it appears to be a blunder is that at the moment deaf parents who want to choose to have a deaf child, to select a deaf child are apparently being prevented by people like Prof Pembury from doing precisely that so you don’t actually need the law. I found Ian’s position of a moment ago rather confusing, in other words, it is rather nasty that we are making that apparent and evident in new law when it has been going on quietly behind the scenes for quite a long time.

BUERK
Melanie, if there are to be guidelines and it is not to be just a matter for parental choice or leaving it on a random level where would the line be drawn? Would the line be drawn on treatable things or be drawn on things that are life threatening or drawn on some notion of pain and hardship?

MELANIE PHILLIPS
Well I think we are up a gum tree. I mean personally I would not have started from here I would not have gone down the IVF road. Ian says drawing lines is the worse possible thing I think the worst possible thing is the brutalized and dehumanized future and I am afraid we are now leaving morality behind as we are galloping into a post human future.

BUERK
Ian a last quick word

IAN HARGREAVES
You are drawing a line on one medical technology which you would not be willing to apply to a whole host of previous medical technologies which have had significantly beneficial effects.

BUERK
That’s it for this week from very high up in the gum tree from our Panel Melanie Phillips, Michael Portillo, Sarah Dunant and Ian Hargreaves and from me Goodbye.
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