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INSIDE THE ETHICS COMMITTEE

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TX:听 06.08.08

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PRESENTER:听 VIVIENNE PARRY

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PARRY

Today on Inside the Ethics Committee, the desperate plight of a child going through a gruelling treatment regime.听 A so-called saviour sibling could be the answer but can you put one child at risk to save another?

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Over the coming weeks, we'll be looking at the complex ethical dilemmas presented by this and three other medical cases and discussing them with a panel of experts.

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These are all real cases and for each one we'll be hearing testimonies from those actually involved.听 And with the help of our panel, we'll be showing you how clinical ethics committees untangle and weigh up the often conflicting ethical issues of a case before giving their advice.

And now to today's case.听 Catherine was born in August 2001, the first child of her delighted parents, Charles and Clara.听 She was apparently healthy but then Clara started noticing things weren't quite right.听 Let's first hear from her and then from the doctor.

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CLARA

She was very listless, she would fall asleep in the middle of a feed, she would not react to things sometimes, I wondered at one point is she deaf because she wasn't reacting to stuff.听 So when she was about 11 weeks old she was by then pretty much pure white - I mean so pale that you couldn't see her lips.听 And I remember how waxy her ears looked.听 We took her into the local A&E and that's when we first met Josu, who was the registrar at the time for paediatric haematology.

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DOCTOR

I was responsible for the ward on that day and she presented through casualty being extremely pale and listless, only to discover when we did the initial blood test that she had virtually no red cells at all.

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CLARA

The first thing they told us was it's not leukaemia but then they said we think it's likely to be Diamond Blackfan Anemia.

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PARRY

And that's exactly what further testing confirmed.听听 Diamond Blackfan Anaemia or DBA is a rare blood disorder in which few, if any, red blood cells are produced by the bone marrow, causing anaemia.

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CLARA

We just kept hoping that it wasn't really the case, please don't let it be the case, that kind of classic denial thing.听 So then we were wondering well what does this mean for her, how will - how will she live, what will be her quality of life because she was so little there was no way she could tell us how she was feeling.

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PARRY

Baby Catherine's treatment was gruelling.听 She had to have a day long blood transfusion every month to keep her red blood cell levels topped up.听 These transfusions were lifesaving but they had a serious side effect - too much iron.听 Red blood cells are normally constantly renewed and the iron in them gets recycled from the old ones to the new but add lots more, as you do with a transfusion, and you're adding more and more iron and too much causes irreversible organ damage unless you get rid of it.听 Luckily there is a way.

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DOCTOR

It's a drug that has to be given as a continuous infusion at least five nights of the week.听 And so you can imagine what that means for Catherine and her mother - every night before she goes to sleep they have to connect her through a needle, which they have to put underneath the skin, which is painful and Catherine has to sleep throughout the night attached to a pump that delivers the drug.

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CLARA

Initially Catherine hated it - you know, screaming I don't want it, I don't want it, terrible hysterics.听 But children are incredibly resilient and once Catherine realised we weren't backing down, that no matter how much she screamed she'd still get the needle - as we called it - she got very used to it but she certainly didn't like it and often said I wish I were normal, I wish I didn't have to do this.

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PARRY

But these drugs aren't able to remove all the iron.听 Over time it builds up causing so much organ damage that 25% of patients die before they reach the age of 35.听 And the only alternative treatment - steroids - didn't work for Catherine.

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CLARA

Once we saw that that was her quality of life and that there were potentially many other problems that would appear in the future we started thinking is there something else, should we be giving her a bone marrow transplant?听 Obviously to give a child a bone marrow transplant you need a donor, obviously there was natural conception we knew it would be a one in four chance or being mooted around at the time was a way that you could be sure to get a match which was through pre-implantation genetic diagnosis, which is where you create an embryo through IVF and then you can check its tissue type to see if it really is a match for your child before it's implanted again and you go on to a normal pregnancy.听 But it brings out the gut reaction in you - you are concerned that you are throwing away embryos and there's also potentially, at that time, you don't know if you're harming even the child that you're testing to see if it's a match.

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PARRY

As if this wasn't difficult enough, in this case, the family couldn't be sure that another baby would be free of Diamond Blackfan Anaemia.听 It wasn't clear whether baby Catherine's condition was caused by a faulty gene that was inherited from her mother or father, or whether the mutation just occurred spontaneously in Catherine.听听

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Catherine was tested to see whether she had one of the mutations associated with DBA.听 None of the known mutations were found.听 This isn't unusual as it's thought that there other mutations as yet unidentified. Was family history a better clue?听 Amongst Catherine's extended family there were no cases of DBA. So surely that must mean this mutation in Catherine is a one off?听 Well no.听 One of the strange things about Diamond Blackfan Anaemia is that there is both an infant and adult form, which is much milder. People can live undiagnosed with this form for decades.听 The bottom line for Charles and Clara, no one is able to rule out having another child with the same condition.

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DOCTOR

Because in Catherine's case we didn't know which gene was causing this there was no way we could counsel the family and tell them whether they had a risk of having a subsequent child or they were going to be free.

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PARRY

Unfortunately a transplant from an unrelated donor was too dangerous - it carries up to a 30% risk that Catherine would die during the bone marrow transplant itself.听 That's way too high given that DBA can be treated, even if it is awful. And with a related donor, the procedure still carries a 5% risk of death.

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Clara and Charles, thought having another baby - a so called saviour sibling - was the only way of helping Catherine.

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And now having outlined the first part of this case, let me introduce today's panel.

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Deborah Bowman is a Senior Lecturer in Medical Ethics and Law at St George's Hospital, University of London.

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Prof Peter Braude听 who runs the largest pre-implantation genetic diagnosis centre in the UK at Guys and St Thomas' Hospital NHS Trust.

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And Dr Simon Meller is a paediatric oncologist, formerly of the Royal Marsden, who has a special interest in medical ethics.

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And you too will have an opportunity to give us your thoughts by telephone or on the programme's website听 and I'll be telling you how to do that later.

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Peter Braude, before we come to the ethics of the case we've just heard from Clara that they're considering pre-implantation genetic diagnosis - PGD - to select an embryo with a certain tissue type, now how would that alter the odds compared to a natural conception, for which there's a one in four chance of having a match?

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BRAUDE

I think we have to be quite clear when we use the term PGD what we mean.听 By a PGD what we're talking about is a couple going into in vitro fertilisation not because they're infertile but in order to get embryos that are available to remove a single cell from the embryo on day three and then to test it for a specific genetic disease that we know that the couple is at risk of.听 So that is PGD.听 Now when we're talking about tissue typing on its own - and that's the kind of scenario we've got here - the genetic disease doesn't come into it at all, you're simply biopsing the embryo in order to find out what type of tissue match it will have in order to find the right one for, if you like, a saviour sibling.听 One in four would be a match but we've got to add into that the likelihood of success of going home with the baby.听 Because we may also find you can't make the diagnosis, there's something else wrong or the test didn't work.听 I think it's very important for people to realise how rarely this is done and I suspect there probably aren't much more than 10 cases that have ever been done and when you look at them the chances of them going home with the baby is probably not much better than 1 in 10.

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PARRY

That's really a very, very low chance indeed.听 Deborah Bowman, what are the ethics of this particular case so far?

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BOWMAN

For some people should we be using embryos - creating embryos, storing embryos etc.听 The specifics of this case raise a different dilemma perhaps and those relate to whether one is screening out for disease or tissue typing - whether there's any moral difference between those two things and the implications for the family, for the child that may or may not arise as a result of IVF and going forward for the sibling.

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PARRY

Is there a moral difference between creating an embryo to get a tissue match or prevent a disease and normal conception?

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BOWMAN

Gosh is there a moral difference between those two things?听 It depends, I guess, what the purpose might be.听 In most reproductive technologies one is creating multiple embryos, there might also be multiple purposes, so you may be doing PGD, you may be doing straight IVF, you may be looking to do research, you may be interested in all three.听 Unless you have a very particular stance on something like personhood where for you, if you believe life begins at conception, you would not want to engage in reproductive technologies and you would distinguish it from natural conception.

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PARRY

But if, for instance, a couple wanted to have a baby and just go on having babies until they found a match there would be no regulations to stop them.

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BRAUDE

We have a regulator in this country and we have a law and it says exactly what you may and may not do to an embryo and I think that's terribly important.听 There are very, very polarised views - whether you believe that this is just a few cells in a dish or whether this is an incipient person or whether it has full personhood.

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PARRY

Simon, there's a real risk here, isn't there, that another sibling might be born with DBA too?

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MELLER

Yes that seems to be the case.听 It would mean that although the baby born was tissue type matched to the sick child the transplant would be fruitless because you would be transplanting the disease which you were hoping to eradicate.

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PARRY

Unless it was the adult form which was mild.

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MELLER

Yes, that raises the question whether you should deliberately transplant a young child with bone marrow that's going to create a disease in adult life.

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PARRY

I was thinking, as I was hearing all this, that parents are completely overwhelmed by the situation they find themselves in, they're desperate to do anything that will help their sick child.听 Are they really the best people to be taking decisions when they're so overwhelmed?

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MELLER

In normal family decisions I think we all accept that parents are the best people to make decisions.听 But听 I think it's reasonable to question whether they're able to make really good decisions all on their own, I think they need a little bit of help.

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BOWMAN

I think that's why we have a body that looks at the welfare of a child that might be born because we understand that families have their own values and the genders which might compete.

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PARRY

So a perfect point to say what did Charles and Clara decide.

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CLARA

We didn't want to make any difficult ethical decisions.听 It was a tough decision to think yes a bone marrow transplant but it was much easier if we could give Catherine her bone marrow transplant because we happen to have some cord blood from a child who was born naturally.听 So we went ahead and had our second child and just hoped perhaps that she with the one in four chance might be a potential donor for Catherine.

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PARRY

But the new baby wasn't a match.听 By this time Catherine was three years old.听 The whole family were acutely aware that Catherine's condition was only going to get worse as she got older.听 If her condition deteriorated any further, she might be too sick to survive even the best matched bone marrow transplant.听 Whatever they did, it had to be soon.听 They decided there was no time to waste.听 They wanted four children anyway, but also wanted to be sure that the next one was a match for Catherine.听 The only way to do this would be to create embryos using IVF, check them to see which were a tissue match and then to implant one back into Clara.听 But there was a problem.

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Thomas Baldwin is Professor of Philosophy at the University of York.听 He was on the ethics committee at the HFEA - the Human Fertilisation and Embryology Authority, the body that regulates reproductive technologies.听听 What Charles and Clara wanted to do - create a so-called saviour sibling -听 requires a special individual licence from the HFEA.

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BALDWIN

In 2003 you could only use tissue typing in order to select an embryo that was of the appropriate tissue to match with an existing sibling if at the same time you were testing the embryo to enable you to select the embryos that were free from the genetic disorder that afflicted the existing sibling in question.

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DOCTOR

In Catherine's parents case the situation was complicated by the fact that once we knew that Catherine had Diamond Blackfan Anaemia we hadn't been able to identify the genetic defect that was causing it and therefore we didn't have anything to screen the disease out.

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PARRY

Given this the couple couldn't get a licence to proceed in the UK so they flew over to the States where it was possible to have tissue typing undertaken.

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Clara had her eggs harvested, fertilised, and the embryos screened to see if any were a tissue match for Catherine.听 The American clinic also offered the couple another test.

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CLARA

The lab did offer to test for abnormalities - aneuploidy testing they called it - so that would have been checking for Down's Syndrome and really any other abnormalities.听 And we decided that we would test for that as well because how terrible would it be for us to have gone through all this and it's a pretty nasty thing to go through, at least that was one benefit that we could guarantee that we had created a child that as far as we knew would not have any other nasty illness.

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PARRY

But there was further heartbreak.听 After all this, none of the embryos proved to be matches.听 A second round of IVF also yielded no matches.听 The couple braced themselves for yet more IVF.听 But in 2004, everything changed.听 They saw in the press that a Mr and Mrs Fletcher, who also had a child with Diamond Blackfan Anaemia, had got a licence from the HFEA allowing them to do just what they wanted.听 To screen for a tissue match even though they weren't able to screen out the disease.听听听

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BALDWIN

As a prelude to reconsidering our policy on this we tried to gather up the evidence on the outcomes for children born following the use of PGD which indicated that the outcomes were no different from the outcomes for children born following IVF anyway.听 So that was very positive.听 That indicated that there was no reason to restrict use of tissue typing to cases where parents would want to use it anyway in order to avoid a serious inherited disorder.

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CLARA

I was getting fairly desperate by this stage, it's such a terrible thing to go through and there was so much more at stake because we really, really wanted our third child but also we were thinking of Catherine.听 So the third time round we didn't test for abnormalities, we just thought let's just go for it because if there's something wrong with the embryo it probably won't implant in any case and just to have a match and to think that we'd made one step further was all we really wanted.

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PARRY

So I just want to get this clear.听 The family couldn't do tissue typing initially because the exact genetic mutation causing their daughter's condition wasn't known.听 So they had no way of screening the embryos for DBA and that's what the HFEA insisted on in order to issue a licence.听 But then the HFEA's guidance changed - why?

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BRAUDE

They had previously allowed in 2001 for PGD to be done with tissue typing, in other words still looking for a genetic disorder but in this particular case it was tissue typing only and it followed a judicial review where there was a challenge to the fact that the HFEA had allowed PGD with tissue typing and the judgement that was eventually given down said you could do either - you could do PGD with tissue typing or tissue typing on its own - both would be allowed.听 In this particular case it's purely to test matching.听 That you can do straightforwardly without knowing anything about the mutation.听 The problem is that the mutation may or may not be there so you are taking a small risk that you could actually be passing on the mutation, as we heard earlier.

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PARRY

Deborah, what are the ethics of that?

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BOWMAN

I think what this shows is that the ethics thus far in PGD have focused on initially trying to prevent 听harm to a child that was going to be born and then subsequently thinking about whether or not simply a saviour sibling that was tissue typed - that was sufficient benefit because it turns on its head the ways in which we normally think about making decisions for children because what one is doing in this sort of situation is not so much preventing harm to any child that may be born because, as we've heard, that's not possible, one is actually creating a child, a sibling, for somebody else.听 So the issue then is is that sufficient moral reason to go ahead and create a child.

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PARRY

Simon.

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MELLER

Well the question is is this child, when it's born, just a commodity and of course most people would say no, it's not and most parents would say no, we wanted to extend our family anyway.听 So I think very seldom will a saviour sibling be born to parents who regard it only as a commodity to provide stem cells for another child.

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PARRY

And there's no benefit to the baby that is going to be born?

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BOWMAN

Unless one believes that the benefit of existing is a benefit in and of itself.听 But then one might say well the baby is being born into a family where they have said they wish to have another child, we all have children for many complex reasons - to satisfy something in themselves, we have siblings because we don't want only children - there are lots and lots of reasons for this.

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PARRY

What about the techniques involved in selecting a particular embryo, whether it's to screen out a disease - PGD - or to select a particular tissue type - are there any risks for the embryo?

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BRAUDE

Well we don't really, really know the answer to that.听 When we remove a cell from an embryo so far that we know from the work done in America, the work done in this country, those embryos seem fine and that the children being born from them are fine.听 But it's still early days, there are many, many effects we might expect later.

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PARRY

And is that why the HFEA had not been licensing this procedure earlier?

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BRAUDE

I'm so pleased you asked me that because it is absolutely relevant because there was a lot of discussion as to why the HFEA allowed something, that changed their mind and so on and I would like to remind you that the law says that we can only undertake practices designed to secure that embryos are in a suitable condition to be placed in a woman.听 So in other words it has to be for, if you like, the embryo and the woman's benefit.听 That's fine for PGD where you're testing that there isn't a particular awful disorder but when it's tissue typing alone the only benefit is to another person, it isn't a benefit to the woman, although it may be to the whole family, and it isn't to that individual either.

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PARRY

Now if the couple are able to have a baby that's the same tissue type of Catherine cord blood, and that's the blood in the placenta and cord at birth, could be used as a source of stem cells for bone marrow transplant but what are the ethical considerations in taking a newborn's cord blood?听 Simon.

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MELLER

I've heard cord blood described as a waste product and I think we have to question whether that is the case.听 It certainly doesn't cause the newborn baby any discomfort to have the cord blood put into a bag and put into a deep freeze.听 But that blood clearly belongs to the foetus and thus to the newborn baby.听 Good obstetric practice is to delay clamping of the cord and allow that blood to flow into the baby so that it has a larger amount of blood and haemoglobin, so is less likely to become anaemic.

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BRUADE

The other issue that has been brought up is the dynamics at the time because if you're looking for this precious commodity you've actually gone through IVF, you've gone through all the testing, you've found the match, this baby is now on board and is going to be delivered but you have to get the cord blood, where is the attention?听 Is the attention on getting the right amount of cord blood or is the attention on the mother and her obstetric care?听 And I think that dynamics is really something we have to look at very carefully.

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PARRY

I'm intrigued by this test that the couple had in the States.听 When they had their tissue typing there they had this aneuploidy testing to screen out embryos with abnormal numbers of chromosomes, how crucial is that test?

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BRAUDE

The problem that we have now begun to understand is that when you take a cell from an embryo the premise of the whole test is that all the cells of the embryo are the same.听 And that is not necessarily the case.听 And if you test the single cell and say well perhaps it has got a missing chromosome 16, this may not be true for the rest of the cells.听 So you're actually removing from the cohort some embryos that would have helped that patient get pregnant and I think this is the kind of scenario here, so the first two cycles it didn't have any embryos to replace, some of which were taken away for no good reason at all.

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PARRY

But the States they do it all of the time.

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BRAUDE

I know they do that and they're still having to come to terms with the fact that the current randomised trials show that this technique probably doesn't work.

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PARRY

Have you ever been asked to do this type of saviour sibling?

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BRAUDE

Effectively not so far.

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PARRY

And would you do it if you were asked?

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BRAUDE

Well I think there are some extremely complex issues here which our multidisciplinary team look at and are not certain themselves, and I'm sure we're going to find out some of the reasons today.

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PARRY

You're listening to inside the ethics committee on 大象传媒 Radio 4 and today we're discussing the case of Catherine, a little girl with a life threatening disease whose only hope is a bone marrow transplant from a sibling.

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Charles and Clara are having their third round of pre-implantation genetic diagnosis and are delighted to find that there is one embryo which is a tissue match for Catherine.听 It was implanted in her womb and she went on to have a normal pregnancy.听 They called the baby McKenzie.

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Everything was been set up to ensure that her precious cord blood could be collected at birth.听 But then there was desperate disappointment.听 Despite everyone's best efforts there weren't enough cells of the right type to give Catherine a bone marrow transplant.听 The only alternative would be to extract the cells directly from little sister McKenzie's bone marrow at a later date.

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Catherine's mother Clara takes up the story.

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CLARA

When McKenzie was born we were just so pleased to see her and it's just like having any other baby really, we really, really wanted lots of children, so we were just really excited to have a newborn.听 But every picture I took, which was with Catherine and McKenzie together, had added meaning because I knew that Catherine was looking at a lifeline, as well as her lovely little sister.听 So it meant so much for us that finally we got to the stage where we had hope.

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PARRY

And to everyone's relief as the months went by it became clear that McKenzie was at least free from the infant form of Diamond Blackfan Anaemia.听 It meant that a bone marrow transplant really was a possibility.听 The benefits to Catherine are clear.听 But what about McKenzie?

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DOCTOR

Using McKenzie as a bone marrow donor raises new ethical considerations because the cord blood is collected from the placenta, which is thrown away after the birth of a child and doesn't in any way affect the donor.听 However, a bone marrow collection is a very safe procedure but it does involve 90 minutes general anaesthetic and inserting two large needles in the back of the hip and collecting a substantial amount of bone marrow which is going to give us the stem cells, the mother cells, to be able to do the transplant.听 Because the collection is mixed with blood the patients are anaemic and they need to be given iron, so that in the following weeks they make the new red cells again.听 Of course this procedure has absolutely no benefit whatsoever for the donor other than the fact that she will grow up knowing that she has provided cells which will allow the cure of her sister.听 And of course McKenzie is not going to be able to provide the consent.

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PARRY

Jasmin Aquan-Assee.

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AQUAN-ASSEE

I met this family as part of my role as the clinical psychologist on the bone marrow transplant team and my role was to assess their psychological well being and also to act as an assessor, as part of the Human Tissue Authority, to look at McKenzie, the donor's psychological well being and suitability to be a donor.听 With McKenzie, at 17 months, she's not going to have an understanding of any abstract concepts so there my focus was really with the parents.听 In this family the parents were very forward thinking in trying to make sure that there was no rivalry, sort of stigmatisation for McKenzie being the donor.

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PARRY

But are there any benefits for her?

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AQUAN-ASSEE

If this helps Catherine survive or at least have a better quality of life that's going to have a direct impact on McKenzie as well and the entire family.听 So McKenzie's going to be able to continue to grow up in a family that is happy and healthy.

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CLARA

The concerns for McKenzie obviously were paramount to us but luckily that was one statistic that was relatively clear cut in that the chances of things going wrong were miniscule if things were handled properly and we had a lot of faith in our doctors at the hospital.听 So that was in the end a relatively easy decision, despite the fact that it was almost the most important one.

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PARRY

A bone marrow transplant would mean Catherine having to spend two months in hospital in an isolation unit followed by four months intensive outpatient treatment..听 She would have to endure high doses of chemotherapy to kill off her existing bone marrow, before McKenzie's could be听 infused into her circulation.听 The chemotherapy is at such a high dose that Catherine has a 90% chance of becoming sterile.听 And there are many other risks.

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DOCTOR

First one is the risk of the patient dying of a complication during the transplant, with the case of a sibling transplant is certainly less than 5%.听 It also carries a risk of probably between 2-5% that the bone marrow will not take up and will be rejected.听 We always collect the bone marrow of the patient before the transplant and we store it, so that if the reaction were to happen we can infuse their own stem cells.听 And the third risk is something called graft versus host disease and is that the newborn marrow recognises the body of the recipient as something foreign and attacks it.听 Now in this type of transplant it's probably around 10% and no one can be absolutely certain, our experience is that in time we are able to control it and make it disappear.

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PARRY

Another important consideration was that even if Catherine had a bone marrow transplant and was cured of her symptoms of anaemia, she still has the condition Diamond Blackfan Anaemia and its associated risks.

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Up to 10% of patients develop cancer, commonly in their mid teens, and this risk is heightened by chemotherapy.听 Worse still, Catherine was starting to show very early signs of organ damage, and her doctor was concerned that the transplant should take place as quickly as possible, preferably by the age of six.

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There's a four year age difference between the sisters which would mean operating on McKenzie before she's two when there might not be enough bone marrow.

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CLARA

So the clock was ticking in that are chances of success for Catherine would get less and less as time went on.听 At the same time we had a very small child for whom it could be potentially very dangerous to put them through a general anaesthetic.听 So what we had to do was somehow find a compromise between the optimum time to operate on both of them with the maximum chance of success for both of them.

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PARRY

Deborah, this is an ethical minefield, how on earth do you pick your way through it?

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BOWMAN

Anybody would identify with this family and the awful choices they're being asked to make.听 I was very struck though by the way in which risks and benefits are being discussed.听 The risk to McKenzie are very much perceived as minor, and that's understandable, everything is relative, this family have experienced awful things with their awful child.听 But also the benefit, more interestingly, is conceived quite clearly by the psychologist as relating to Catherine's success and the enduring gift, if you like, that McKenzie will be giving Catherine.听 And yet we then went on to hear that this is a very risky procedure which doesn't necessarily resolve the problem at all.听 So there are some extremely confusing messages being given about risks and benefits here and I think that is why it makes it so difficult morally if one only takes account of risks and benefits and makes them contingent upon the two children.

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MELLER

Yes it's a problem of reconciling the best interests of two children in a sibship and who should decide that.听 I think we heard the doctor talking about medical best interests and maybe that's the easiest bit of it all.

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PARRY

Peter.

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BRAUDE

All these ethical issues are coming up at this stage but the majority of them are actually predictable earlier.听 And this is where the importance is of actual good counselling.听 Right at the very start of this, what this might mean if various scenarios need to be played out.听 And in fact the HFEA insists that the clinician involved in the care of the child who may need the transplant makes the case as to whether PGD or tissue typing is the appropriate thing considering all these issues.

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PARRY

Simon, you've dealt with many cases involving bone marrow transplant, this idea that children would be glad to have saved their sisters, well if you know teenagers they generally hate their siblings by the time they get to their adolescence.听 What impact does it have on a family?

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MELLER

In older siblings who are donating bone marrow to a brother or sister one begins to get some idea of how they feel and you're quite right even if they absolutely loathe their brother and sister and fight with them all the time my experience was that when it came to the crunch of helping them in this way mostly they were altruistic.听 It's only someone of considerable maturity, definitely a teenager, who can truly be altruistic and of course here we're asking parents to be altruistic by proxy.

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PARRY

Can you be altruistic by proxy Deborah?

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BOWMAN

I think probably no.听 Unless as a family you believe that everybody has to pull together, whether that's sharing bedrooms or compromising over healthcare decisions.

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PARRY

I mean in some ways you set up a situation where if the cord blood donations doesn't work then you're going to extract bone marrow, which is a much more invasive procedure, and say the kidneys fail you've then set up a situation where one sibling is completely beholden to the other.

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BRAUDE

And how does a child or how does an adolescent say no?

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BOWMAN

And we know from the clinical ethics list show with adults that actually there are adults who will be tissue typed as potential donors and they have asked clinicians to effectively lie because they have turned out to be a match and they don't feel that they want to undergo donation.

听

MELLER

That's certainly the case.听 It's the moment of taking the blood for the tissue typing where the ball starts rolling.听 And once it starts rolling it rolls inexorably towards the transplant which goes back to something that Peter said at the beginning - the counselling and permission needs to be obtained right at the beginning of the process before the tissue typing is carried out.

听

BRAUDE

Simon, do you think the parents actually want to hear what you have to say?听 Why would they make another decision?听 They're going to lose their child.

听

PARRY

Deborah.

听

BOWMAN

I think it's no accident that Helena Kennedy, the chair for the Human Genetics Commission, has said we need to look out for so-called saviour siblings, we don't know enough and she wasn't talking about medical risks, she was talking about the psychological factors.听 In the States there are well established networks for so-called saviour siblings and for me that sort of aftercare is as important as the consent taken way back when parents are desperate.

听

PARRY

Because actually we don't know, because those saviour siblings will still only be little, what the impact is going to be when they reach their adolescence.

听

Simon, we're taking a decision now about Catherine that actually she might, herself, regret later, because she might be made sterile by the chemotherapy.

听

MELLER

It's very understandable that the parents should consider the short term benefits to Catherine first.听 And indeed one can argue that it is of secondary importance.听 But if we go forward 10 years Catherine's now 16, she's enjoyed life, free of blood transfusions and then she discovers that she is going to be infertile and she's not very pleased about it.

听

PARRY

I have to say that Catherine's parents looked into this and there was nothing that they could do.

听

BRAUDE

Absolutely except if we continue with proper research on very early ovaries then maybe we'll find a way of actually storing the eggs of very young children for this very purpose.

听

BOWMAN

It's so difficult because to me this case is all about hope, that presumably there is a point where hope becomes so contingent on scientific progress and possibles and one day and at some point you have a child who is suffering in front of you ...

听

PARRY

And you have to make your decision.

听

BOWMAN

You do and I suppose I think that maybe moral courage is needed actually, as well as scientific hope and I think that probably is the point to which this family may have come.

听

PARRY

It's one of the most complex cases I think we've ever discussed in this series but I'm now going to ask each of you that awful question, which is:听 what would you have advised the ethics committee in this instance?听 Would you have advised a bone marrow transplant?听 Peter Braude.

听

BRAUDE

Well if it was right now I don't think you actually have a choice because the moral obligation you have is to a child you're going to let die basically or become very unwell and the possibility of curing them within the whole family structure.听 I think to have done anything else would be very difficult indeed.

听

PARRY

So is that yes?

听

BRAUDE

That's a yes.

听

PARRY

Simon Meller.

听

MELLER

If I'd been the doctor involved with this family I think I would have wanted to go to the clinical ethics committee with the parents alongside me and say that we have thought long and hard about this and we have jointly reached a very difficult decision which is to go ahead with the transplant and I'd want to be able to say to the clinical ethics committee we have considered McKenzie's situation by having an independent assessor to look at the situation through McKenzie's eyes and I think the clinical ethics committee would probably say well go ahead then, you've been through the procedures that are necessary to make this the right way forward in this family.

听

PARRY

Deborah.

听

BOWMAN

I agree with Simon but I think for different reasons.听 I can't see any reason not to do this, which isn't quite the same for me as saying yes do it.听 I don't object the notion of saviour sibling on the grounds of instrumentalism, I can see why that was a reasonable decision to make at the time.听 As regards to the transplant I don't perceive the psychologist as representing McKenzie's interests, not because of any deficiency in her assessment but because I simply don't think it's possible when McKenzie was 17 months old.听 However, the family, quite rightly, have persuaded me actually, hearing their testimony, that they are a unit that looks out for the best interests and makes those incredibly difficult balancing decisions that every parent and every family makes when their children need different things.听 And so for that reason it's a slightly qualified yes with support for both Catherine and McKenzie that is separate for each of them.

听

PARRY

Well thank you all very much for your consideration of this case today.听 Deborah Bowman, Simon Meller and Peter Braude.听

听

And now let's find out what happened in the real life case.

听

DOCTOR

In March of 2006 we had reached the point where although the donor was just below two years of age it had reached sufficient weight to be able to collect enough bone marrow.听 We knew that Catherine had a certain amount of iron accumulation and damage and we didn't want that to continue.听 And it was the time of the year that was suitable for the family because one has to be considering very carefully when you have a bone marrow transplant which is going to require two months of inpatient treatment and a further four months of very intensive outpatient treatment that can be done at a time when the family can cope with it.

听

CLARA

It was a really tricky decision to make.听 The first thing you do when you talk about it is you hear all the potential negative side effects.听 And along with all those negative side effects are lots of percentage chances.听 And so you're just juggling statistics.听 And we just had to decide for ourselves on the weight of probabilities what was likely to make us feel happy and normal and give us a decent quality of life and I think also you're thinking at least I tried.

听

PARRY

So they decided to go ahead with heart in mouth.

听

DOCTOR

Very recently I have lost a child to a different condition and in those cases you feel extremely guilty because that child would have been alive if he had continued with the medical treatment, even if long term he would have suffered complications.听 Of course as a human person that causes a lot of sadness and pain and takes quite a while to get over every time that happens.听 But I am able to cope with it if I know that at the time we made the decision or whether to transplant or not that child I was honest, I gave accurate information to the family and that we considered it was in the best interests of the child.听 Whether it goes well or not afterwards will of course impact on our feelings, but one can say to oneself that you are trying to do your best in your job.

听

CATHERINE

I feel good but I don't have to go to hospital that much.听 I do miss the doctors a lot and Des was the most best.听 I wake up early, I wait until the alarm goes off, I get dressed and then brush my teeth and then I ask if I can watch TV.

听

PARRY

And that, you'll be delighted to hear, was Catherine, 18 months down the line and off all drugs except a daily dose of penicillin.听

听

You've been listening to Inside the Ethics Committee and if you'd like to have your say or find out more information about the topics covered in this programme then go to bbc.co.uk/radio4 and follow the links to Inside the Ethics Committee where you can leave your comments or you can call the Radio 4 action line on 0800 044 044.

听

Next week the ethical dilemmas raised by care for the elderly.听 An older man with mild dementia has had a bad fall, he wants no contact with the medical profession and to continue living at home.听 His relatives disagree.听 Who should make the decision about his care and his best interests?

听

ENDS