Screening

Series in which Joan Bakewell is joined by a panel of experts to tackle the ethics involved in a real hospital case.

They examine the case of Ayesha and her bid to receive fertility treatment. Ayesha has a genetic condition which causes muscle weakness and curvature of the spine. She is in a wheelchair and heavily reliant on her husband and others for day-to-day tasks such as getting out of bed, having a shower and going to the toilet.

By law, the welfare of any child born through fertilty treatment has to be assessed, and Ayesha's case is no exception. But how does her disability and future health affect the welfare of a child? Is it ethical to put the needs of someone who doesn't exist yet above those of someone who does? Should a fertility treatment request be treated any differently if one of the parents has a disability rather than a life-threatening illness like cancer? Whose job is it to decide what makes someone adequate parents?

There is a 50 per cent chance that her condition will be passed on to any future child. It is possible to screen out the condition in affected embryos. But Ayesha says she would accept any child regardless of its condition and wouldn't want any screening. The law says you cannot screen in a disability, but says nothing about screening one out. Is it ethical to consider screening for embryos in effect with the same conditon as Ayesha's if she was offered fertility treatment?

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45 minutes

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Thu 30 Jul 2009 21:00

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Programme Transcript

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THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.  BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

 

 

 

INSIDE THE ETHICS COMMITTEE

           

Programme No. 3 - Screening

 

 

 

RADIO 4

 

TX DATE:                  THURSDAY 30TH JULY 2009  0900-0945            

 

PRESENTER:           JOAN BAKEWELL 

 

CONTRIBUTORS:   DEBORAH BOWMAN

                              ALICE MAYNARD

                              ANNEKE LUCASSEN

 

PRODUCER:           PAMELA RUTHERFORD 

 

 

 

 

 

NOT CHECKED AS BROADCAST


BAKEWELL

Each week brings news of further advances in medicine, and scientific

progress that could  help treat serious illness, possibly save life and certainly reduce suffering.  But with each such medical leap forward, comes a whole raft of dilemmas, ethical dilemmas as to just how, when and for whom these new interventions might be appropriate.  So far Inside the Ethics Committee has dealt with such dilemmas in terms of real individuals facing difficult choices.  But this week's programme is unusual because it looks at the dilemmas of a case where a significant part of the ethical considerations concern a person who doesn't yet exist.

 

This week's real life story tells the case of Ayesha, a young woman in her early thirties.

 

AYESHA

I'm married with my husband since year 2000.  After two years of marriage noticing that we'd not been able to have a child because I thought it would, just like anyone else, it would come, I wouldn't have to be trying or anything.  The family started saying how come you've not got a child, it's been so long you've been married and I noted all the dates down and what I thought was convenient to do.  I did a bit of research and went by that way but even that didn't work.  I was really frustrated as to why it's not working out.  Therefore, I approached a fertility specialist which my GP referred me to.

 

BAKEWELL

The gynaecologist Ayesha and her husband were referred to, met the couple in 2003.

 

GYNAECOLOGIST

The couple were requesting infertility investigation and treatment.  They'd had about three or four years of unprotected sex and hadn't been successful in conceiving.  So there was some immediate things that struck us about Ayesha, particularly in relation to her past medical history, that made it slightly different to perhaps other couples that have attended with the similar duration of infertility.

 

BAKEWELL

And what made Ayesha's case different from many of the usual referrals was a condition she had, which was first noticed in childhood.

 

AYESHA

I was very young, about the age of 11, when a teacher in my school starting noticing that I was limping to one side and gradually I started getting a curvature in my spine which was inwards.  After having a couple of falls I was advised not to walk, not to bear any weight, I was advised to use a wheelchair until any further notice.  Gradually I think the weakness got worser and worser which made me end up in a wheelchair and now into an electric wheelchair, not able to walk at all.  My husband has to help me with all daily life like having a shower, going to the toilet, he lifts me in and out bed, in and out of the car and help me cook as well everyday.

 

BAKEWELL

Ayesha, then is in a wheelchair, too weak to stand and move unaided and dependent on her husband for all sorts of personal care. 

 

AYESHA

He actually gets me out of bed in the morning and on to my commode wheelchair, which is a bathroom chair.  Takes me from my bedroom into the toilet.  Transfers me from - lifts me from the bed onto the chair and then wheels me through into the bathroom.  After I've had a wash he gets me dressed and puts me in my wheelchair.  There are some days when I can't actually get up in the morning and I don't want to get myself out of bed.  So if he's not at home it just means I have to lie in bed all day because my parents can't actually lift me, it's really difficult for them.

 

BAKEWELL

And it was Ayesha's condition that was part of the assessment of whether she should receive fertility treatment. An assessment that is required by law for all couples who seek such help. 

 

Any clinic is bound by regulations set out by the Human Fertilisation and Embryology Authority.

 

GYNAECOLOGIST

One of the differences that we have in infertility treatment compared to couples that would conceive spontaneously is that we're bound by the Human Fertilisation and Embryology which is abbreviated to HFEA, that they have - insist upon all centres who provide licence - infertility treatment having a policy of considering the welfare of the child and that extends to any existing children within the family or indeed any potential child that may arise from fertility treatment.  So we had a bit of background to do with the couple when we're considering welfare of the child they were really two aspects to that, that we had to look at.  The first was really in terms of the parenting ability of the woman, of Ayesha, who has significant neurological disability and mobility problems, slight upper arm weakness as well, which gives practical issues with tending to a newborn baby.  So that was the practicalities of how the couple and indeed how Ayesha would go about dealing with a new child, a new baby.  And then there was the other aspect to fertility treatment which is the potential transmission of the underlying condition to any child that the couple may have.  Now had the couple conceived naturally, which was always possible in the interim, to some extent these decisions would have been taken away from the clinic or indeed from the couple themselves.  But that hasn't happened, so the situation that we're in means that we do have to give due attention to these possible outcomes.

 

BAKEWELL

To help assess them for these two considerations the couple faced a battery of experts: an obstetrician to discuss possible risks of pregnancy and childbirth;  a genetic consultant to talk about the inheritance of her condition to any possible child; and an independent counsellor to talk about plans she had made on how they would bring up their child. 

 

But first Ayesha had to see a neurologist to define exactly what her condition was.  She hadn't seen a neurologist since childhood when her muscle weakness and spinal changes first started and her first diagnosis was made.  At that time she was said to have Spinal Muscular Atrophy: SMA.  But  these latest tests led to a different conclusion. The neurologist now concluded she had a condition called Fascioscapulohumeral dystrophy or FSHD.  But what difference did that make in terms in the fertility treatment.

 

NEUROLOGIST

In Ayesha's case the onset of her symptoms appeared to be in childhood.  Those who started presenting in childhood with Fascioscapulohumeral dystrophy tend to be a bit more disabled quicker than those who started much later in life.  As far as we know people with Fascioscapulohumeral dystrophy do not have much of a reduction in lifespan, so yes she could have a very reasonable lifespan.  At the moment, over the last few years, we've been seeing how there didn't seem to be significant progression that I would say has alerted me to be worried that she is deteriorating rapidly.  So that, in a way, is good news for her.

 

BAKEWELL

As well as looking into what FSHD meant for Ayesha's prognosis the neurologist was also asked to evaluate how it would affect her ability to look after a baby.

 

NEUROLOGIST

The kind of thing I looked at in Ayesha's case specifically I have to say if Ayesha had a great weakness can she be able to carry a baby, will she be able to hold a baby to breastfeed if she was going to breastfeed, would she be able to hold a baby, dress him or her up and things like that.  Yes okay she's not likely to be able to run around with the child and sort of go out except using a wheelchair but that's something which can happen to anybody and also can be compensated for by the rest of the family members.

 

BAKEWELL

Ayesha also saw a geneticist who explained what the consequences of the change in her diagnosis meant in terms of the inheritance pattern. The chances of it being passed to any of her children were now significantly different. 

 

GENETICIST

With spinal muscular atrophy a child can only be affected if both parents are carriers and if this had remained her diagnosis her children would only have been at risk if her husband had been a carrier for the disorder and the chance of that is fairly small.  So overall the risk of having an affected child would have been small, it would probably have been less than 1%.  Whereas with FSHD there is a 50% chance of passing the disorder on to a child.  So it does make a big difference to her in the change of diagnosis.

 

BAKEWELL

Ayesha was also referred to an independent counsellor.

 

AYESHA

The counsellor actually discussed about who had in the family and who would be around to look after me and whether my family lived nearby, whether I had a house, adequate space for the child.  I told them about family that I have in India as well that can come over when a child is to come and I told them my brothers and sisters and my brother-in-law and everyone's around.  It wasn't really comfortable because considering if someone was normal, a normal person, not in a wheelchair, they may not have to go through all of this unless it's only special circumstances.  So it was a bit uncomfortable to go through but I have to do it.

 

BAKEWELL

Now let me introduce today's panel to consult them on the knotty issues this case raises.

 

With me are: Deborah Bowman - Senior Lecturer in Medical Ethics and Law at St George's Hospital University of London; Alice Maynard who runs her own management consultancy, sits on the Human Genetics Commission and herself has Spinal Muscular Atrophy which was Ayesha original diagnosis.  And Anneke Lucassen Professor of Clinical Genetics and consultant at Southampton University's Hospitals Trust.

 

Deborah, first of all, let's tackle the law.  Tell me about the HFEA and its authority and its responsibilities.

 

BOWMAN

Okay, the HFEA, the Human Fertilisation and Embryology Authority, was established by an act, confusingly also abbreviated to the HFEA, which is the Human Fertilisation and Embryology Act.  The principle piece of legislation came into force in the early '90s, it's recently been reviewed and significant amendments were made in the Human Fertilisation and Embryology Act 2008.  Essentially it regulates all sorts of things in fertility medicine - research, treatment etc.  For the purposes of this case the provision we're interested in is a provision that requires doctors and clinical teams to look at the welfare of any child that might be born, any child that is in a family where this new child might be born and requires, as the team here have said, you to almost crystal ball gaze, to look ahead and say is this an environment in which a child will flourish.

 

BAKEWELL

What do you see as the emerging ethical dilemmas in this story?

 

BOWMAN

Well I think the ethical dilemmas in this story are as the team have constructed them, that there's an issue about the welfare of the child.  I suspect though that they may be perceiving that differently because of Ayesha's particular condition, whereas in fact the law requires teams to look at all patients and to scrutinise the welfare of the child and the catch word now or catch phrase is supportive parenting, is this an environment in which a child will be - receive supportive parenting?  So we'll probably unpack that a little bit more.

 

BAKEWELL

Yes Anneke, the welfare of the child is it definable in any legal terms?

 

LUCASSEN

I think it's a nice notion isn't it, it sounds like a good thing to do to consider the welfare of the child but if you unpack it I think it's jolly difficult.  And the guidelines from the HFEA tell parents that they need to consider the welfare of the future child and they need to consider things like the risk of future serious medical or physical impairment.  But actually as this case illustrates beautifully that's jolly difficult to unpack when you get to it.

 

BAKEWELL

What do you make of it Alice?

 

MAYNARD

Well I think there are two different kinds of welfare really for the child.  The first is whether or not the child will have an impairment and I think there are judgements made about that.  But there are also the issues that Deborah raised about supportive parenting and the welfare of the child because that child has a disabled parent.  And one of the key issues for me in relation to that is whether or not a disabled person is supported effectively to be a parent because in our current society we say that disabled people have the right to be included and to participate equally as citizens and so on and part of that is about being a parent.  And if you are a parent then you need support to be a parent, parents get all sorts of support from government and from society.  Disabled parents might need different sorts of support and the social care system is very important in this respect.  Now what's not clear to us from the details that we have is whether or not Ayesha and her husband have chosen specifically not to engage with the social care system and have chosen for Ayesha's husband to provide her with support.  But as parents they might want to make a different choice.

 

BAKEWELL

Now let me ask you what you make of the scrutiny that is being given to this nature of parenting, do you think it's too intrusive?

 

MAYNARD

I think it's legitimate if you're going for assisted reproduction to think about the welfare of the child but I would question whether just because Ayesha has an impairment that makes it any more important to look at it and look at it in different ways with what appear to be certain assumptions perhaps.

 

BAKEWELL

There is a sense that she's having to tick a lot of boxes and go through a kind of exam to get there, is that quite the right outlook we should have?  Anneke.

 

LUCASSEN

I don't think it is and in fact I'd be very interested to know what the legislators had in mind when they asked clinics to make this welfare assessment.  It would be helpful to have some examples of what they would have deemed to be such bad welfare that you were to refuse IVF treatment.  Because without that I think it's a jolly difficult assessment to make.

 

BAKEWELL

Deborah, what about this matter of being required to judge the welfare of someone who doesn't yet exist - it's a very strange idea?

 

BOWMAN

It is, it's absolutely curious and it doesn't happen anywhere else that I can think of in medical ethics.  Legally foetuses don't have legal rights until they're born, they may have moral rights, that's another conversation.  But you are effectively being asked to look beyond the person in front of you to an imaginary person who may or may not ever exist.

 

BAKEWELL

Is there any particular reason why fertility doctors are qualified to do this?

 

BOWMAN

No there isn't any reason why they're qualified to do it, although I would say that many of them find this work very challenging and are no keener to do it than anybody else might be but they are required to do something like it.  They certainly have considerable discretion and that discretion may be used differently.  And it may also be burdensome, we don't think about ...

 

BAKEWELL

The team have judged that Ayesha's prognosis, her own life expectancy, is significant, most parents don't know how long they're going to live, I mean is it relevant, is it intrusive?

 

LUCASSEN

I think that if she had a diagnosis that was likely to kill her in the next few years that is more significant than if she has a normal life expectancy.  In this situation they've assessed that her life expectancy is pretty normal, so that does make a difference.

 

BAKEWELL

Though it is right for them to inquire?

 

BOWMAN

Well I wonder about this, I wonder if we would make the same inquiry of a woman who was a mountain climber seeking fertility treatment, you know there are all sorts of things that might impact on life expectancy and it may be justifiable but I suspect we don't do it systematically or consistently, which makes it morally questionable.

 

BAKEWELL

Alice.

 

MAYNARD

I do think that life expectancy, certainly in relation to impairment is something that's quite difficult to judge.  And certainly it changes over time because as medicine gets more sophisticated people live longer with impairments.  Certainly people with my condition were expected to die before the age of five, then before the age of 20, then before the age of 40 and I'm rather older than that now.  And that's partly to do with medical advances.  And so judging when someone is going to die is notoriously difficult anyway but certainly in relation to impairment I think it's quite tricky.

 

BAKEWELL

What about trying to assess the parenting abilities, which means investigating a marriage really and scrutinising their relationship - that's a very personal matter isn't it, is it appropriate for examination?

 

LUCASSEN

Well it's certainly not something I would want to do.  Again I think the analogy would be adoption where some sort of assessment of the home situation is made, hopefully not by doctors but by more experienced professionals than that.  And I think that may well be very uncomfortable for people who observe their friends and family not having to undergo this scrutiny but I think that's to do with allocation of resources more than Ayesha's disability.

 

BAKEWELL

Deborah, what about Ayesha's - her rights, her rights not to be intruded on too much, does she have any or are they in shreds?

 

BOWMAN

It's interesting, I mean her rights do seem to be curtailed the minute she walks through the door of a fertility clinic.  But I think it's important to say that it's not just Ayesha, it's anybody who is seeking a medical intervention that they wouldn't otherwise get and that operates within a legal framework that requires certain processes are followed.  So it's arguably an area in which rights are curtailed.  But it is interesting, the Human Rights Act does refer to the right to found a family and the right not to be discriminated against.  And so there are potential implications for fertility treatment there.

 

BAKEWELL 

Back to story.  We've already heard that Ayesha's new diagnosis means there was a 50/50 chance that her condition would be passed on to any child. But there were options here:  first  the geneticist explained the possibility of screening for such a condition.

 

GENETICIST

In this situation we went on to discuss the availability of tests in pregnancy and it is possible to do accurate prenatal diagnosis at 11 weeks gestation, usually with the results being available in a week or two.  So that's one option.  But they immediately felt that that was not for them.  For people who are having assisted conception anyway another option, which is sometimes liked to be aware of or consider is pre-implantation genetic diagnosis and this means when you've had a test tube conception and you've got an embryo that's just eight cells, after about three days, you can take one cell, test it for the disorder and then only use unaffected embryos to put back in the woman's womb.  That isn't currently available for FSHD in this country but is in Belgium.  So I think at the time I saw her it wasn't an immediately available option but important to discuss with her because it might be something that they might want to factor into their decision making at some point.

 

BAKEWELL

Faced with these options how did Ayesha and here husband respond?  They rejected the idea of screening during pregnancy with its implied option of a termination.  But what about the pre-implantation screening?

 

AYESHA

It's not necessary that the child will carry the same genes as me.  So even if they did we would accept a child as it is.  I wouldn't go for screening, we don't want to know whether the child is going to be disabled or not.  There's no way we're going to have any specialist tests done or anything to see that there's anything wrong with the child.  We would accept a child as it is because a child is a gift from God.

 

BAKEWELL

Ayesha and her husband rejected the second option preferring to leave things to chance: it was their personal world view that a child comes from God and at that point they didn't want any scientific intervention.

 

Setting aside that consideration for a moment Ayesha also had to see an obstetrician about how her condition would affect her pregnancy.  

 

GYNAECOLOGIST

The things that we'd be concerned about would be risk of gestational diabetes, which can happen when you're overweight, that could be screened for; hypertension, that's high blood pressure in pregnancy or a condition called pre-eclampsia would also be more likely to develop in view of her size and also the risk of deep venous thrombosis or thrombi embolism as a result of prolonged immobility but there's a plan in place for pregnancy in relation to preventative measures to minimise the risk to her own health in pregnancy.  That dealt perhaps with the pregnancy related risks but perhaps more difficult one for us was what deemed as an ethical dilemma as to whether there is a significant risk to the unborn child in terms of the transmission of the condition and as such we sought advice from the clinical ethics forum and with Ayesha's permission wrote to them to ask if they felt there were any reasons why we should either support or indeed deny treatment on the basis of the welfare of the child.

 

AYESHA

We were a bit disappointed when they said oh we still have to take it to the clinical ethics committee, it was really shocking for us because we were thinking oh my God have they still got to take this ahead and they can't come up with a decision.  The sooner we had a child it would mean we're young parents, we are now in our thirties and it would have been nice to have a child in a younger age.

 

BAKEWELL

Right, well the team have now arrived at the clinical ethics committee, so it's time for us to go back to our panel. 

 

Anneke, can you enlarge on the difference between the different screenings, both of which Ayesha has rejected?

 

LUCASSEN

Okay, so the two main screenings that were discussed were PIGD, which is pre-implantation genetic diagnosis.  This can only be used if you're having invitro fertilisation, IVF, already because then you take the fertilised embryos, let them grow for a little bit and take one cell out and use that cell to make or refute the diagnosis that you're interested in.  The other method that they were talking about is prenatal diagnosis which is when a couple is pregnant either through IVF or naturally and you wait till the pregnancy's 11 plus weeks, then you take a small sample of either the placenta or the amniotic fluid, the fluid around the baby, and use those cells to make or refute diagnosis.

 

BAKEWELL

Right, now what is the significance of her having refused the screening do you think Anneke?

 

LUCASSEN

I don't see huge significance in that, if she doesn't want that screening I think she's absolutely entitled not to have that screening, particularly if that is an informed decision and she is saying my condition is not so bad that I wouldn't want children with that condition, then I think that is absolutely fair enough.  I suppose the question one might have is has she had enough information to make an informed choice, it sounds like she has but that would be one of the questions I would ask.  So I don't see a particular issue here.  I think sometimes people who ask about testing do see a difference between the two types of test because one involves testing in an established pregnancy and then terminating that pregnancy, often not till you've already felt the baby move, if the diagnosis is in any way delayed.  So there's been a significant bonding between the mother and the children already, so that's a much more traumatic thing to consider doing.  So some couples do think that PIGD is the much preferable option because they wouldn't have to terminate an affected pregnancy.

 

BAKEWELL

Presumably in law this is Ayesha's right to self-determination, I mean this is her patient's choice and she's able to do that?

 

BOWMAN

Absolutely, and I think just to pick up something Anneke said, we often assume that the reason for screening is to lead to the possibility of termination, there may be many reasons for screening and having a diagnosis, it may be about adapting your home in advance, it may be about seeking medical advice.  So I think we have to be careful when we say that there is inevitably an implication of termination of having antenatal screening.  But to go back to the question about the law.  Absolutely Ayesha has capacity, she's seen all sorts of people and explained herself very clearly.  There's a consistency of view.  And screening is an offer, an invitation, it isn't something that one has to accept.  Although interestingly often screening is presented as part of the pregnancy deal, if you like, your 20 week scan etc. etc., without perhaps thinking through some of the consent issues.

 

BAKEWELL

Was there significance of that for you, Alice, she's refused any kind of screening, so she's prepared to just go forward regardless, what do you make of that?

 

MAYNARD

I think it's very sensible of her because obviously she doesn't find living with her impairment to be a difficult or a challenging thing, she views her quality of life as evidently quite good, so therefore it would seem sensible to me that she would go ahead without screening.

 

BAKEWELL

But she's risking, because of her diagnosis, a 50/50 chance that she will pass on her impairment.

 

MAYNARD

And so what?  I don't see the problem with that really.  I think that it's perfectly acceptable to have children with impairments and in fact if you take something like pre-implantation genetic diagnosis and you take something like spine or muscular atrophy in my mind that's about removing people like me from the face of the earth, eradicating a species if you like.

 

BAKEWELL

Well you're not a species Alice, you're just someone with an impairment, so I don't think we're seeking to eradicate you, we're trying to - the whole of society conspires to provide women with babies that don't have impairment, that's the sort of ambition of society expressed in its medical decisions, is it not?

 

MAYNARD

But why, would be my question, I don't understand why it's so important, particularly in a modern technological society to make sure that women don't have children with impairments.  I think children with impairments bring a diversity to humanity that is an incredibly important aspect of our humanity, we are different people.

 

BAKEWELL

Deborah.

 

BOWMAN

I agree with Alice but I also think there's something about people making the choices that are going to be the situation in which they can be a optimal loving caring parent.  So I would be concerned that people would be pressured or expected to continue with pregnancies, in any circumstance actually, where they didn't feel that they could provide a loving supportive environment.

 

BAKEWELL

Anneke.

 

LUCASSEN

And there would be certain couples who have an experience, either directly or indirectly, of a condition that they perceive is so awful but they would rather not bring those sort of children into the world.  And that choice, it's technically available so that choice should be there, if they decide not to take that that should be accepted.  But if they decide to have the screening that should also be accepted.

 

BAKEWELL

There's someone who doesn't have any choice here at all which is the child.  The child is not being given a choice as to whether to be born unimpaired.

 

LUCASSEN

Well that's I think why there is a difference between these different techniques because if you already have a pregnancy then you have a child or near child already, whereas if you're talking about PIGD then you're selecting which embryos to be implanted and that's why people do see a moral difference between those two techniques, you're choosing one of many possible different children to have and I think many people would say that if you have that choice you should choose the best possible life for your child.

 

BAKEWELL

Do you disagree with that Alice?

 

MAYNARD

What is the best possible life?  I happen to like mine and I think it's the best possible life that the child of my parents could have had. 

 

BAKEWELL

But you'd be making a decision which would be separate from that that's generally endorsed by society.

 

MAYNARD

Indeed, many people would think I was a monster, particularly if I say that had I had a child I would have wanted a child with SMA.  But I think many parents want to bring children into the world that are children like them, we reproduce ourselves, the word reproduce is the key here I think.

 

BAKEWELL

But you would be burdening a child with certain problems about the life it had to lead.

 

MAYNARD

I'm uncomfortable with the word burdening I have to say and yes I would be aware that there would be barriers that the child would encounter in its life, that it would have to either encourage others to remove or overcome for itself.  But actually many children encounter barriers in life and overcoming barriers can be character forming for example.

 

BAKEWELL

Are we conceiving of the perfectability of the human race, the whole eugenics bandwagon that we so deplore?

 

LUCASSEN

Yes I think that is right at the heart of this dilemma isn't it and I think Alice's voice here is very important because it does tell a story that we don't often hear, we don't hear enough.  And we know that indirect reports of disability or of diseases are often perceived as much worse than if you listen to people's direct experiences.  So there is a careful balance here between giving people choices, informed choices, and not going down the eugenic route that you say yourself.  And I agree that you know choosing what is the best possible life, again sounds very good but it's a jolly difficult one to make, especially if you have someone with a condition telling you that it's not that bad to have the condition.

 

BAKEWELL

Slippery slope Deborah?

 

BOWMAN    

Absolutely but the trouble with slippery slope arguments is they often - they make so many leaps and assumptions.  So we assume that by doing one thing something else will automatically follow.  We assume, for example, that a life is particularly worth living or not worth living.  I was very struck by what Alice said about burdening - I see all parents as burdening their children, it takes many years of therapy for many people.  It's so interesting that we assume visible disability, and we must remember also that a lot of apparent disability is not visible, we automatically assume is burdensome, whereas we are all burdening our children as parents, whether we like it or not.

 

BAKEWELL

I'll own up to that. 

 

LUCASSEN

There is a tension there because the law is saying you are not allowed to select for disability.  You highlight that tension perfectly there.  If it's saying you're not allowed to select for disability how do we incorporate Alice's voice, which is saying my disability is fine?

 

BAKEWELL

You're being screened out Alice.

 

MAYNARD

Absolutely.

 

BAKEWELL

Are you angry?

 

MAYNARD

It does make me - actually yes it does make me angry, I'm not a naturally angry sort of person but it does make me - it makes me afraid actually because yes I understand the concept that slippery slope is an easy thing to say and it involves a number of assumptions but it - there is something about screening out at the beginning of life means that there are fewer people like me and like Ayesha around and that actually it becomes harder then for society to deal with us, to understand us, that there are fewer of us for our voices to be heard.  And so our voices become weaker and therefore we are more likely to be eradicated in all sorts of other ways.  And we have to remember, for example, that the forced sterilisation of disabled people is not that long ago, it was outlawed not that long ago.

 

BAKEWELL

It's time for me to ask you what you would advise.  Deborah?

 

BOWMAN

What I would advise is that Ayesha should have the treatment.  I would be very interested to know the basis on which the team brought this case, I can see that, and I think it would be helpful for me to advise them properly if I were to be able to understand what it was they were concerned about particularly.  I can see why they're in a quandary, it's because of this tension that the law requires scrutiny of the welfare of the child both in general and in specific cases and I would commend the team for bringing the case, I think they've shown a degree of ethical self-awareness that is, as I say, commendable.

 

BAKEWELL

And what would you advise Anneke?

 

LUCASSEN

Yes I too think there's little dilemma for me here that she should have the treatment.  Listening to the testimony, like Deborah, I can see why the team felt a tension between the law and what they were expected to assess before offering this treatment and that that's why they took it to the clinical ethics committee.  And I suppose it would be nice if Ayesha and her husband could have been included in that process a bit more, the testimony suggests that they feel they have to go through a sort of legal assessment and something that's entirely down to her disability.  It would have been nice if she could have had less of an impression of having to go through hurdles but being given some space for discussion that the ethics committee facilitated.

 

BAKEWELL

Okay Alice, what would your decision be, what would your advice be?

 

MAYNARD

I think I have a particular concern about that it went to the ethics committee and that was about the duration because earlier we heard Ayesha say that they'd wanted to be young parents and now they were in their early thirties.  And with a progressive impairment that actually does have an impact on someone's capacity, physical capacity, and I think therefore to have taken so long is possibly unethical in and of itself.  Having said that if it landed on my - in my lap as an ethics committee member I would say yes she should have assisted reproduction, not surprisingly.

 

BAKEWELL

So let's go back to the story.  What did the clinical ethic team decide?

 

GYNAECOLOGIST

The clinical ethics forum did consider the case very carefully and they considered the patient's own autonomous wishes and whether they should be respected, regarding having a child and took into account all the background information from the independent obstetrician from the clinical geneticist as to the risk of transmission to the child.  And their overall conclusion was that the centre would have to have a very good reason for denying treatment to Ayesha.  I think they were reassured by the new diagnosis of the FSHD in that there was no guarantee that the child would be as severely affected as Ayesha is affected.  Yes the child may have a disability but will that necessarily affect their overall ability to function as an individual, as a human being?  So I think overall they felt that the risks were relatively low and that sufficient background had been sought.  Following that we felt that it was reasonable to proceed with treatment for the couple.  It's not IVF treatment, it's a variation on IVF treatment called IUI or Intrauterine Insemination.

 

BAKEWELL

So now Ayesha and her husband have cleared what must have seen to them  a formidable sequence of hurdles.  They were to be allowed treatment, but initially not IVF, they were to try a treatment called IUI or Intrauterine Insemination.

 

GYNAECOLOGIST

IUI involves really a preparation of preparing the partner's sperm and then inseminating the sperm not into the vagina that would happen with natural intercourse but actually higher up into the - through the cervix and into the uterus, so you were getting a specimen of the prepared sperm closer to the eggs, so closer to the fallopian tubes and that may give an increment of advantage over and above natural conception.  We planned to undertake three cycles of treatment, and she's at present about to undertake I think her second cycle, first cycle being unsuccessful, so that will happen at some stage over the next month or so.  And then we then have the decision if the third cycle isn't successful as to whether we would proceed to IVF treatment and that's the next logical step from there.

 

BAKEWELL

After waiting so long with hopes rising and falling,  what does it now feel like for Ayesha to be actually having treatment?  Her anxieties haven't been allayed.

 

AYESHA

It is a bit uncomfortable because of all the injections I have to take and when I took my first treatment I was really annoyed because it didn't work and it is sort of heartbreaking that it's not worked.  It made me feel now I've only got another two treatments left, I don't know whether they're going to work.

 

BAKEWELL

There is no way of knowing.  So suppose three treatments of IUI don't work.  What happens then?  Will it be back to the clinical ethics committee all over again?

 

GYNAECOLOGIST

I think we would almost certainly proceed with IVF with her, given that the major ethical questions have already been addressed and there haven't been any substantial changes, we would probably abide by the decision that we've made already and wouldn't see it necessary to go back to the clinical ethics forum or indeed any other outside independent team to seek further advice.

 

BAKEWELL

Ayesha and her husband have come a long way.  It's clear evidence of their longing for a child that they have persisted with so much involvement in consultations, tests, assessments.  But what if neither IUI nor IVF is successful;  are there any last hopes?

 

AYESHA

We are hoping it will work, if it doesn't then if they don't decide IVF treatment then it maybe going to India and getting some treatment from there.  But there would be costs involved and it costs about £6,000.  If I had the money I would very seriously consider going to India.  As I haven't at the moment it's - it is a difficult situation.

 

BAKEWELL

Is there a way of judging or commending whether you accept your destiny as an infertile couple or not?  Is that an ethical consideration?  Alice, I don't think you would give up.

 

MAYNARD

I don't think I would give up, no.  I think as long as it's available in UK society I would think it was appropriate for disabled people to access it in the same way and I personally would have pursued it. 

 

BAKEWELL

Is there a stage at which it's important to bring people to a realisation of the impossibility of something Anneke?

 

LUCASSEN

I think they're might be but I think now we're talking about a situation that applies to everyone and Ayesha's condition makes no difference really.  It is important to know that part of the reasons why only three rounds of IVF are recommended is that after that the likelihood of success tails off really quite dramatically.  So of course we've all heard of examples of people conceiving after many rounds of IVF but that's quite rare.  So the long - the more times you have IVF the less likely it becomes that you will conceive and I think people should be helped in coming to that realisation.

 

BAKEWELL

Deborah.

 

BOWMAN

And I think the other thing is that there's actually a legal requirement for IVF centres, fertility centres, to have available counselling facilities and that could be perceived as an unjustified intrusion into people's privacy but actually we know that fertility treatment itself is incredibly stressful, incredible painful for many people and part of that service may sometimes be about helping couples accept both the grief of treatment not working and perhaps a future that is without a child.  And that service doesn't stop simply because cycles aren't working.  So I think it's important that we understand that IVF and fertility treatment actually - there's a duty of care that extends way beyond the test tube.

 

BAKEWELL

Let's leave the last word with Ayesha.

 

AYESHA

When I see other women or families that are having children I would like to really feel that experience myself of what it is, carrying a child and in the end it's just up to God when he's going to give it.

 

ENDS