Inside The Ethics Committee Comments

Sarah Harding
I am surprised that the key issue here was concern over whether the fetus would inherit Ayesha's disability, when other conditions such as Downs Syndrome are so widely accepted, and in those cases, prospective parents have the right to choose whether to continue a pregnancy with the condition. Society is more than able to care for disabled individuals and I agree with Dr Maynard that those with disabilities enrich our society. However, by Ayesh'a own admission, she is sometimes unable to get out of bed in the morning due to her condition, and is then left alone all day by her husband who works. I am certain that if this was the case for another couple hoping to adopt, this would not be allowed, as Ayesha would be viewed as unable to care for the child adequately. Surely the same criteria should be adhered to for all prospective parents undergoing assisted fertility?

Peter Marcus
Alice Maynard got away more or less unchallenged with overlooking any right of the unborn child to be spared a disability that their fertility-obsessed parents already know to be a burden, yet feel free to burden their offspring. She, it seems, would have a child emerge into the world certain to have a disability merely to satisfy the parents' selfish desire to "reproduce themselves" in their own image. No thought seemed to be given to the hypothetical child's perspective, as would be the case in, for example, a family law case where all participants including children, live and unborn, are given an advocate to voice their interests. To then take the argument further, as Alice Maynard did, and argue that the child's "impairment" (given to it deliberately by its parents regardless of the child's potential point of view) was somehow a blessing to be enjoyed by the child because "diversity is a good thing" struck me as facile, narrow-minded and slightly sick. It was precisely at this point that we could have done with a strident, opposing point of view at least to start a debate about this dilemma. Joan appeared to be momentarily taken aback by Maynard's view, but did not give any substantial challenge when it was sorely needed. Wanting children merely to bring mirror images of ourselves into the world must surely be the worst possible reason to have children. Shouldn't our chief aspiration be to help future generations reach beyond our own horizons for a better life than we have?

claire griffiths
With regard to the disabled lady who wanted IVF. Whilst having the greatest sympathy for her situation I found it hard to believe that the committee believed it correct to allow this to go ahead. If you want to adopt a child you go through a rigorous assessment and a woman who is overweight, unable to get out of bed unaided, has I understand, a 50% chance of having a child with similar severe disabilities. It will be a huge drain on social services needing presumably a full time carer for the child, or with IVF possibly multiple children, who may themselves be similarly disabled. I think it beggars belief. What about the children? If it had happened naturally ... I cannot help but recall the couple who insisted on having their severely disabled daughter kept alive at all costs and against medical advice, now have split and when I last heard no one could be found able to care for the child outside hospital. I would think the strain on this couple could be worse. Disaster.

J Tolson
I found it odd that Ayesha was apparently prepared to accept her genetic condition and, possibly, to pass it on to her child but not prepared to accept the fact that she and her husband could not have children naturally.

William Stevenson
There are clearly many people who, according to other people including me, should not be allowed to have children or even roam abroad. The reason we don't attempt this regulation is that it is not practicable to ban procreation, or build sufficient prisons. The immediate issue here is not that unsuitable people are assisted to bypass 'God' under the guise of a right to create children - this is inevitable when the responsible people prefer to appear 'caring and sharing', rather than run the risk of being declared Nazi Eugenicists, until the NHS and society run out of money. The issue is the need, in order to justify a radio programme, to create a pseudo-dilemma which from the beginning would have only one outcome. There was never any doubt that the clinical team and the programme panel would come out in favour of 'treatment', but they had to pretend to go through agonising considerations to get there. As for the desire to create disabled offspring!.. we have heard this before, such as from a desire by deaf parents to bear deaf children.

Des
I agree with many other contributors that the programme failed to address the financial implications of Ayesha having a severely disabled child. This may sound harsh, for I am effectively saying that the outcome would be different for those of independent means and those financially dependent on the State. If State benefits paid to Ayesha as a consequence of her daughter's disability came from the health budget would the medical team have acted differently?

R Bridgeman
"The law says you cannot screen in a disability, but says nothing about screening one out". In this case we are told there is a 50:50 chance of any child having the same condition as the mother. What percentage chance of a disabling condition NOT being screened out would be tantamount to screening IN? Would a 75% likelihood of the child being disabled mean that a decision not to screen was equivalent to screening in?

Andy Easton
I have taught people with a wide range of mental and physical problems for a long number of years. Very few have ended up in well paid jobs. I have no problem with this but to have a child and expect other people to do all the physical and financial care is unacceptable

S Knowles
I was astounded by the veritable orgy of political correctness and deluded self interest portrayed by the panel members in today's programme on infertility.The discussion seemed to miss the main point in that here is a couple requesting medical intervention to bring a child into the world with a high risk of being disabled with the inevitable consequence of requiring others to pay for care well past the life of the parents. Solely for their own fulfilment.Screening was dismissed by the couple as being in contravention of God's will but, excuse me, isn't that exactly what they are requesting in asking for high tech fertility treatment? If this couple conceived naturally then good luck to them and let our society give them and the child the support they need. To intervene scientifically to bring a disabled child to parents with limited physical capacity to care for it without state aid is an entirely different matter and one that was not properly addressed in the programme.

Amina Adamu
I am a GP and I also teach first year medical studies in things like ethics and communication skills. This is one of my favourite programmes on radio four and it brings alive all the various ethical concepts we have to be aware of as health care professionals. Is it possible to make the programme available for schools and other universities for small group teaching? It's brilliant.

Rosie
Like many of your corrrespondents on this page, I found today's programme did not justify the term 'debate'. All participants expounded the same view and no-one put forward an alternative. Having cornered the moral high ground by having a participant with the same condition (or is that member of a 'species') as the subject patient, no actual discussion could take place without causing serious offence - as was made clear by that panel member. Presumably the actual ethics committee is similarly constricted. Surely a programme of this calibre should be able to provide a forum for the view of many that the compassionate way forward is to welcome and accommodate members of society with disabilities but that does not mean we actually have to encourage and facilitate more children with the same problem, or we are guilty of eugenics with all the historical connotations of that concept. The subject's 'quality of life' put a new gloss on the term to my mind, especially if her husband could not get her out of bed in the morning. How bad does it have to get before treatment is refused?

Jonathan Edmans
I and my wife have a two month old baby boy by IVF born here in Germany. My wife is German and I am an ex-pat. We did not have the same hoops to go through as Ayesha even though I am a wheelchair user (I have Spina Bifida) and my wife has mild Cerebral Palsy. I believe we did not have the same problems because in Germany disabled people are seen as human, and also the Nazi past here has left a big mark where everything to do with reproduction and genetics is very carefully handled and any questions arising are dealt with more humanly. Lastly, in Germany research that is legal in Britain is largely banned here, so for example screening research for a disability in Britain would more than likely be banned here, because of what largely happened in the 1940´s.

Rachel
My husband & I started trying to conceive when I was 30. I have a condition, we have since discovered, called Hereditary Motor and Sensory Neuropathy (HMSN) which though currently only means I have a limp which restricts me in a mild sense, could mean I may end up in a wheelchair but the medics cannot be certain. There is about a 50% chance of us passing this on to our child. After nearly five years and after two rounds of IVF we are now pregnant naturally (a miracle). I am now 35. We did not consider that there was any point in screening for this genetic disease considering our previous infertility and my age. I have had a FINE quality of life for most of my 35 years and do not believe that any child who inherits the disease would markedly have a lesser experience. We were offered genetic screening via neurological avenues before pregnancy. Again, this seemed less important given my age and the relevant lack of fertility. We would rather have a baby with the condition than not have one at all, to be frank. We hope to try again for a second child should we successfully have this one. Great work Alice, thank you and keep it up.

Kate
Last week's Inside the Ethics Committee was, I thought, one of the best radio programmes I've heard in ages and I was looking forward to this morning's edition. Unfortunately I was disappointed by the way the subject of fertility treatment was handled today, in a discussion that I felt lacked balance. Nobody presented an argument why fertility treatment might be denied to Ayesha and her husband, leaving the panel in agreement, with no real room for debate. Important issues were glossed over or sidestepped, for example, if/when they have a baby, who will provide everyday care for the child? There may well be a simple answer here, but it wasn't explored in the program. (Even a discussion of whether the question should be asked would have been interesting).But perhaps more importantly, I felt that the elephant in the room in this case was that fertility treatment is severely limited. Many healthy, capable people are currently denied treatment on the NHS so the question here is not so much: should Ayesha be allowed treatment? But rather: should treatment be given to Ayesha in preference to, say, a healthy, non-disabled 35 year old woman?It's a really thorny issue with the potential to provide a very interesting discussion, but I feel that opportunity was missed today.

Douglas M. H. Crook
The unspoken question, and therefore unanswered, was to what extent public funds should be made available for these fertility treatments and would it be better spent elsewhere in the NHS. Before the advent of IVF, infertile couples would accept that they had not been dealt the best of hands and had to accept it with as good a grace as they could. My cousin and her husband, married over fifty years ago, found themselves unable to have children so her sister was very happy for them to form a close bond with her children. That's how it used to be and are we any better off now?

Niamh Sander
Ayesha's entitlements should be equal to those of a physically typical woman. However, she is focusing on her needs and not those of a potential child. The child may be physically typical but will not be able to avoid the stress and strain of having a disabled parent. The child may feel responsible for caring for the disabled parent. The child may be disabled and not cope as well as Ayesha, or may not have a caring partner to be a caregiver. It could be argued that similar circumstances may arise in the life of any child, but these circumstances are somewhat predictable or at least have a greater likelihood. Therefore should one choose these restricted outcomes for a child? The decision must be taken by Ayesha but the medical profession that facilitates the potential pregnancy must be somewhat accountable. This is the child welfare element of the question. Humans are varied but I think the argument that creating a larger disabled population will facilitate better understanding and care in the future seems morally questionable. The instinctive feeling of a need to reproduce appears to result in the potential parent putting their wants higher than the needs of a potential child. It is ethical to care for all people equally, whether disabled or not. It is ethically questionable to intentionally create a person, through medical intervention, who will have social, mental or physical issues. The idea that God will decide does not appear logical. If this were the case there would be no need for medical intervention to aid conception.

James Lambert
The problem is that nobody understands the structure and the prime problem has been the misunderstanding of the (human rights act) right. These sorts of rights are high powered politico-philosophical attempts to define Western Europe via its constituent member states. The concept (attempts to) formally reflect an already understood obligation on others to allow procreation. A right is an obligation on everyone else's part to not prevent something, not an obligation on anyone else's part to deliver something. The latter "positive" concept of a right is the "loony left" corruption of the former "abstaining from something" concept. So the applicant for cosmetic medicine has no rights at all, except the right to fair consideration with respect to available resources(because this particular human right act does not imply an obligation to provide anything to anybody, it is protective rather than proactive). Now, what is fair consideration with respect to limit resources? This is the, evidently correct "tick box" criteria of quality of life (and this, arguably, has to be tick box faux de mieux) and, of course, if an applicant refuses to consent regarding a particular box the box is to be defaulted negative. The levels we have jumped between the scheme itself and the politico-philosophical identity of Western Europe includes NHS resource allocation. If a human right is misunderstood this distorts NHS resource allocation considerably. One is tempted to say that if the directorate of the NHS artificial insemination program has successfully obtained a resource allocation enabling Ayesha to qualify after fair and considered evaluation then that directorate has been irresponsibly successfull unless the whole NHS misunderstands the concept of the human right to procreate and its relevance to cosmetic medicine which is in fact no relevance at all.

Valerie
Ayesha says she has to rely on her husband for intimate care and that if he is out she has to remain in bed all day. In my opinion she is not a suitable candidate for IVF; what if something happened to her husband and how would he cope with having to care for her and the baby. I feel the Committee has let political correctness overrule their commonsense. I am disabled myself (polio) and have two children but was able to care for them unaided.

Hazel Evans
This is my first acquaintance with this programme. I found Ayesha's story fascinating and moving. The debate raised issues I would not have thought of myself, and I am grateful for the speakers opening up my mind and leading me to consider such a subject in more depth. I agree with Dr Alice Maynard that there should be room in the world for people with all levels of disability - the more there are, hopefully the greater the level of tolerance and humanity there will be. My best wishes to Ayesha and her husband: I hope God blesses them. Hazel

Nick Pain
Having listened to your program this morning I was hoping to hear an informed debate about a sensitive subject. What I heard was a one-sided view of a very interesting case which unfortunately centered on one of the most hypocritical people featured on your program. I have a couple of points to make, the first of which I would be very grateful to hear your answer to. 1.Your panel consisted of three people who supposedly constituted an ethical committee yet spent the entire program expounding the same view point over and over again and just re-enforcing the point that the last person had just made. There was no debate as such and certainly no-one willing to express a view point that might be outside the very politically correct views held by your panel. I, for one, do not think that it is right, either morally or practically to advocate knowingly bringing disabled children into this world and much less would actively hope that my children would be disabled, as one of your panelist was suggesting. I am sure that I am not alone in this view point and I would have really liked to hear a proper debate on the ethics of this point with someone to argue the opposing case. 2.My second point is about the lady in question having the treatment. On several occasions she refers to God's will in having children, citing it as her reason for not wanting any active screening to take place, yet she is trying to have a child by artificial means? God's will? I find her view point grossly hypocritical!

Jean Margaret Fosbury
Most of the issues considered by your panel of ethical experts centred around the right of disabled women to take the decision to become pregnant and consequently bear children, repeatedly ignoring the central question of what we may consider to be our 'rights'. As each advance of clinical medicine brings new opportunities of choice, so these opportunities seep into a public perception of their 'right' to demand its benefit. Yet the notion of an intrinsic human right to engage medical research, development and expertise in order to bring about a pregnancy by artificial means is nonsensical. No one of a rational mind would argue with a disabled person's right to bear children. But the lady at the heart of this particular case is unable to do this and I cannot for the life of me see what 'right' any of us have to demand fertility treatment. The risks, even for healthy women, are great, both in terms of emotional stress and disappointment, and the cost to ever increasingly stretched medical services and resources are very high. In these circumstances, considerations of possible outcomes are not only inevitable but wholly justified - yet there seems to be no stable criteria to serve committees in making a decision. No one can predict outcomes of parenting and no one can ensure a healthy future for any parent or their children. But it is the fundamental 'right' of any society whose resources are demanded for the purpose of enabling a woman to become a parent - to ask - whether or not that same individual is at least capable of looking after themselves? To presume that someone else, some other family member or relative will always provide sufficient support and care to mother and infant is to make presumptions that are not only unrealistic but also unreliable and irresponsible.

Charles Pipe-Wolferstan
I find it very disturbing that one of your participants seemed to be advocating the deliberate creation of more disabled people to "add to the voice of disabled people". If she had her way, would she be able to say to her child: "You were born disabled because I wanted to have a disabled child" ?

Terry Horan
This programme is interesting but ultimately dispiriting. The pattern appears to be that of an extensive well informed discussion that ultimately simply takes the easiest possible option. Today's discussion was a classic. A severely disabled woman has an aspiration to have a child - no matter the consequences for the unborn child. The depth of this aspiration can be judged by her statement that she would not be prepared to raise a fairly small sum to have the treatment abroad. This was basically a childish ego trip which an ethics committee with any gumption should have rejected - but didn't.

William Thorpe
It seems to me that the Ethics Committee has to operate in a framework where denial of what the patient wants is considered to be denial of the patients "rights". Ayesha claimed throughout that a baby is a gift from god. She apparently believes this, but not enough to accept that the inability to have children must surely also be a gift from god, just not a gift she likes. No one has the right to deny the decision to become pregnant. Any couple can copulate with this in the list of possible outcomes. It is very different to decide to impregnate a disabled woman who cannot concieve naturally. It is to decide to do this "unnaturally". Therefore not a gift from god. The likelihood is that the child will be born and live its life with a serious disability. The proposed mother says she would "accept" that. I contend that she does not have the right to accept it. She is dependant on others to live her own life without the added difficulty, or in her case impossibility, of rearing a child. She will not be doing the parenting, others will. To have the societal ambition to eradicate the occurence of severe disabilty within human society is laudable, even if it is not possible. It is unhelpful to accuse that society of screening out a "species" by attempting to use knowledge and skill to make each pregnancy and birth as near to perfect as possible. How ethical is it to not accept that infertility may be nature's (or god's) way of ending the genetic future of any given mutation? Being holier than thou is not being realistic.

Dilys Burgess
It is not a woman's right to have a child, regardless of medical opinion. It is a baby's right to be given the best chance of a healthy life, not for it to be a lottery (embryos should be screened in this case). If a baby can be removed from its mum because Social Services thinks the mother is unfit to rear it (as has happened), why would a mother so disabled be considered fit to have a child? I wish the lady well but hope God, in his wisdom, does not assist conception. Dilys - A mum who nearly died in childbirth and was eternally grateful that her baby was born healthy.

hs96dlw
Is selecting for disability equivalent to smoking and drinking throughout pregnancy?

Jane Bruton
I am a foreigner now working in England and paying taxes, etc., but I will not be able to build sufficient National Insurance payments to secure an old age pension. Therefore, the ability to support myself is of great interest and actual concern to me. How do "impaired" people support themselves? How do they afford food and shelter? Is this another instance of the Government (in reality the tax payer) funding more and more people unable to support themselves? Where does such a society end when everyone requires support but no-one is left to provide the support?

A Alexander
I am completely baffled by Joan Bakewell's questioning relating to screening and selection. Like many people she does not seem to understand that the choice is not between one particular child being disabled or not, it is the choice between a child being disabled or not existing. I am severely disabled myself and I am horrified by the way that non-disabled people seem to discount the lives of those who are disabled. It is never better not to exist. Regards, A Alexander

Dr Fiona Littleton
My question is - if the woman at the centre of this case had been FERTILE, and had become pregnant naturally, and had presented with a pregnancy, would anyone have investigated her case and doubted her ability to parent? Chain smokers, drug addicts, teenage mothers, obese people, the unwaged, sociopaths - if they are fertile and become pregnant naturally, does anyone investigate whether any of them should be allowed to have their child? Only HELP is available after childbirth for the fertile people, not doubt about whether the child should be born in the first place. Isn't this case about discrimination against the INFERTILE?

P Taylor
Definitely should not have fertility treatment. It is unfair on all around her and the prospective child. Considering her requirements to live day to day it is irresponsible to even consider. Fertility treatment is not a medical necessity and having a child is not a 'right' to be demanded.