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INSIDE THE ETHICS COMMITTEE

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RADIO 4

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TX DATE:听听听听听听听听听听听听听听听听听听听听听听听听听听听听听 WEDNESDAY 20TH AUGUST 2008听

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PRESENTER:听听听听听听听听听听听听听听听听听听听听听听听 VIVIENNE PARRY

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CONTRIBUTORS:听听听听听听听听听听听听听听听听 听ALISON HUNTER

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PRODUCER:听听听听听听听听听听听听听听听听听听听听听听听听 PAM RUTHERFORD听听听听听听听听听

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NOT CHECKED AS BROADCAST

PARRY

On Inside the Ethics Committee today,听 the explosive ethical dilemmas created when a local authority want to test a baby in their care for a genetic condition before offering him up for adoption.听

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Amongst the ethical issues we'll be discussing - who decides for children when their parent is the state? Whose best interests does genetic testing serve - the baby, his prospective parents or the local authority? Should adoptive parents have access to more information than a natural parent would have and does a child have the right not to know.

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All the cases on Inside the Ethics Committee are real life cases, today's is no exception.听 It concerned the case of Tom, a baby who has been put in foster care with a view to being placed for adoption.听 But the local authority responsible for Tom knew he had a 50/50 chance of carrying the gene for a rare inherited condition.听 And they wanted to know for certain, one way or another, before he was put up for adoption.听 So they approached the genetics department at the local hospital asking that Tom be tested .

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One of the medical geneticists takes up the story

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FIRST GENETICIST

I was made aware of an e-mail sent to a colleague of mine, the e-mail was from the solicitor acting as a representative of the local authority asking him whether a child, a little boy, could be referred to genetic testing for a familial condition the local authority was aware that was sort of passing through the birth family of this boy.听 And he was about 15 months at the time.

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PARRY

The condition Tom could carry the gene for is a rare one called Multiple Endocrine Neoplasia Type 1 or MEN Type 1 for short.

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Another of the medical geneticists explains.

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SECOND GENETICIST

This is an inherited condition which a child can inherit from an affected parent usually that results in the development of usually benign tumours that secrete hormones.听 And these tumours can arise in a variety of organs - so particularly the pituitary gland in the brain and the parathyroid glands and also some of the internal organs that produce hormones.听 They're usually benign tumours but they produce these very active hormones that then affect the body in often quite serious ways.听 And sometimes the tumours themselves can develop in places where the growth itself can be dangerous, for instance a tumour in the pituitary gland can press on the optic nerve and cause problems or local problems in the brain.听 But many of the complications - and those that we see most often - are those that are the result of the hormones that these tumours produce.

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PARRY

If the condition wasn't life threatening, why did the local authority听 want the test?

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FIRST GENETICIST

When they first contacted us they felt that knowing about his genetic status or knowing whether he did carry the familial gene change of not was very important to them because they assumed that this would give them very important key medical information which they felt was necessary to provide an appropriate care package for him and inform prospective adoptive parents about.听 They had the idea that a predictive genetic test would tell them for definite whether the child would become ill or wouldn't become ill and they also assumed that it was potentially a very severe life threatening disease and life shortening disease.

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PARRY

But not only were the genetics department not sure that the test would necessarily give the local authority the information they wanted but it was also a request that went against all the usual protocols for predictive genetic testing in children.

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FIRST GENETICIST

The local authority wanted us to test little Tom several years before any clinical screening would have commenced.听 Usually we would have thought of testing Tom between the ages of 7 and 10, we usually would prefer to wait for the child to be old enough to take part in the conversation and the decision-making about predictive genetic testing.听 We could not see the benefit of testing him before we can do anything about it and our sort of usual discussions with birth parents in the context of genetic testing are what do you want to use this information for if we can't do much about it anyway for the next few years?

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PARRY

So the local authority want testing before they put Tom up for adoption, the local genetics service is very uncomfortable with that idea.听 And now having outlined the first part of today's case let me introduce today's panel. With me today are:

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Chris Barnes - who has 20 years experience as a genetic counsellor at Guy's and St Thomas's hospital, who was also one of the authors of the British Association of Adoption and Fostering guidelines on genetic testing and adoption.听听

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Alison Hunter is a consultant paediatrician.听 She's on Sheffield Children's NHS Foundation Trust's Clinical Ethics Forum and has been medical adviser for adoption for Sheffield Local Authority for 10 years

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And finally we welcome back Deborah Bowman, senior lecturer in Medical Ethics and Law at St George's, University of London

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And you too will have an opportunity to give us your thoughts by telephone or on the programme's website and I'll be giving you those details later.

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Before we come to discuss the ethical issues raised by this case let me talk to you, Alison and Chris, to establish the facts of the case - around adoption and this condition MEN Type 1.

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Chris first to you, the medical geneticist described there the condition MEN 1, have you seen it and how rare is it?

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BARNES

It's very rare, it's thought that only perhaps one in every 30,000 people suffer from the condition and it's so rare that most medical doctors perhaps will only see one case in an entire lifetime.听

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PARRY

And what do we know about it?

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BARNES

What we know about it is that it's unpredictable, it does, as the geneticist described, result in tumour growth in endocrine glands that interfere with the production of certain hormones.听 And hormones are very important because they need to be balanced and levels need to be normal for normal development.听 These tumours are benign but they do cause medical problems due to the increased hormone production or their location in the body and it's really difficult to predict, and this is the key problem I think in this case, it's difficult to predict what type of problems or when they will occur in any given person.听 So living with the condition can be difficult because of the uncertainty involved and it affects different people in different ways and at very different times in their lives and problems do not usually occur in childhood, this is really quite unusual and they normally always arise in adult life, sometimes not until the age of 40 or 50.

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PARRY

So how would it be for a parent looking after a child with a condition like this?

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BARNES

It would involve a degree of uncertainty.听 It would also involve regular hospital appointments.听 Screening is recommended for this condition from about the age of eight, nine, 10 and screening usually involves blood tests to look for hormone disturbance and also scanning of the brain to look for particular tumours that may be occurring.听 So for a family with a child with this condition, or at risk of this condition, there is a lot of uncertainty, a lot of commitment to hospital appointments and a knowledge that at some point in that time they will have to discuss with the child the risks of the condition.

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PARRY

Alison, you're a medical advisor in adoption cases, can you tell us a bit more about the process of adoption and what sort of medical information is required?

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HUNTER

Well I see children referred by the local authority who are coming for adoption, they're usually children in care, the majority of children now we have for adoption are children in the care of the local authority, as opposed to children given up for adoption.听 I'm required to assess the child's health for the adoption panel and that's a holistic assessment of their health which includes - I do a medical examination, a developmental assessment, an assessment of their emotional needs, their educational needs.听 But I also include the family history of the child, when I can get the information, and the child's antenatal, neonatal history - so its birth details.听 And I try to pull it altogether.

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PARRY

Because presumably you don't always have access to information about the parents?

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HUNTER

We have some information through social services but it does depend on how much consent the parents have to give us the information, we are limited to some extent.听 We often have a certain amount of information and then we have to try and evidence it, if we can, with consent.

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PARRY

Why does the local authority insist on all this information?

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HUNTER

It's very important for a child's future carers and the child's future health providers in society that the doctors have full information about a child's health and their future development, it has huge implications for how the child can be looked after and things have moved on a lot from 20 years ago, 30 years ago when full information was not given and it wasn't in the child's best interest.听 It is clearly in the child's best interest for doctors to have as much information as possible and to know what they're taking on.

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PARRY

But presumably it's not always easy to get information about family history, I mean perhaps you might not know who the father was.

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HUNTER

We often don't know who the father is and the court is not able to require a father to do paternity testing.听 We feel that we're detectives a lot of the time, as well as being doctors.听 In adoption there is a lot of uncertainty, we cannot guarantee certainty at many levels, not just to do with genetics but to do with paternity, to do with the risk factors during pregnancy, to do with all sorts of things in the family history and doctors have to be prepared by the social workers and by ourselves to understand that there's uncertainty and as medical advisors we have to tell people what we don't know as well as what we do know.

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PARRY

Does that mean, for instance, you can't say well this woman had a wonderful diet while she was pregnant, didn't drink ...

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HUNTER

No, you have to give the range of speculation about what the situation was and you have to be as open and as wide as possible and explain what you don't know but the range of outcomes might be.听 It's actually quite tricky, you have not got a crystal ball but you give as much information as is reasonable and then you contextualise it by how accurate it may be or may not be.

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PARRY

Because we have this image of babies being adopted as teenage mothers and they've been left on doorsteps but actually that's really not the case at all now is it?

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HUNTER

No, the vast majority of the children I see, about 95%, are children in the care system whose parents haven't been able to parent because they had difficult childhoods themselves or they've got learning difficulties, drug and alcohol misuse and these children have got a lot of risk factors.

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PARRY

So these are children who are enormously disadvantaged from the very start of their lives.

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HUNTER

Yes, they're often very medically healthy children but there's a lot of risk factors which we can't always get to the bottom of.听 To explain to prospective adopters we have to explain the uncertainties and we have to help adopters understand those uncertainties and take things forward as best we can.听 And usually they accept that and take the child, in my experience, if you give them full information and are honest with them.听 Thirty years ago adoption was about finding relinquished, given up, babies by young unmarried women to parents who needed children and that the thrust now, it's the reality now, is to find appropriate families from a wide range of backgrounds for needy children who are in care and it's different - a slightly different way of looking at it.听 Hopefully one finds children for adoptive families and finds families for adoptive children and both of those things take place.听 But my priority is the child's interests and the child's needs.

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PARRY

Deborah, this is a really complex case.听 Two potentially problematic ethical issues - genetics and adoption.听 Can you outline what the main ethical dilemmas that this case raises for you?

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BOWMAN

Sure, absolutely.听 I think the first is that we're dealing with a young child and so there is necessarily a question of best interest and other people, be that the local authority, potential carers, healthcare providers, whoever, deciding what is in that child's best interest in as broader way as possible.听 The second issue is about genetics.听 Is or are genetics different from other sorts of treatments or interventions one might use or involve children in.听 And finally I think there are particular issues about children in care and the adoptive process which may inform our understanding of some of the issues around uncertainty and information and consent.

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PARRY

Okay so let's return to the case.听 What the local authority wanted was certainty, one way or another, but the medical team were clear that testing couldn't give them the certainty they sought.

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FIRST GENETICIST

Because it is a variable and unpredictable disease we felt that a gene test would not much contribute to giving a higher degree of certainty, it would still be completely uncertain, a gene test would still not tell us whether he will be healthy and fine until his 60s or whether he may have the first one or two problems by the age of seven or eight.

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PARRY

And that wasn't their only worry.

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FIRST GENETICIST

We had one major concern that by discussing predictive genetic testing or even doing it we would run a very high risk of breaching Tom's confidentiality.听 If we have discussions with birth parents they understand well and we make it very clear that genetic test information, the genetic test result, is the property of the person whom the test has been performed on and that it is entirely up to this person or to the parent acting on behalf of them to decide who knows and who doesn't know.

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PARRY

So the genetics team have strong reservations about doing the test.听 Before we talk about the issue as it specifically relates to adoption let's start by discussing the ethical issues around genetic testing in children.

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Chris, briefly, what's the role of genetic testing?

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BARNES

The role of genetic testing is to give somebody some information about a particular genetic condition that they may or may not carry.听 Usually a condition in their families.听 The problem with genetic testing in children is that genetic testing is a very important procedure that we believe requires consent and you can only give consent if you have knowledge and understanding.听 The problem with a very small child is that there is no way they can give consent to a test.听 The result of which may well impact on their whole life.听 So therefore we want to postpone the test until that child can at least be involved in a discussion about the test.

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PARRY

Now just tell me about the various types of genetic testing because they're not all the same are they?

BARNES

They're not, no, that's a very important point.听 No, I think you can divide genetic tests up into three.听 Firstly, there are what we call diagnostic tests which are tests that are performed when a person already has some kind of medical or developmental problems, so you're seeking to explain why that child or that adult actually has the problems.听 And I think that nobody would really argue that diagnostic testing is always, if not straightforward, is always a reasonable step to take.

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PARRY

So that's a yes or no answer?

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BARNES

It's a yes or no answer in normal circumstances.听 Then there are a whole range of tests called carrier tests where we're looking for carriers of particularly the genes that are not going to do - to carry any harm but may well impact on any children they may have.听 In other words that these are tests that have reproductive implications.听 And then there are the tests that we're discussing with Tom, predictive tests, these are tests where we are looking for the presence of a genetic fault that will tell us something as to whether or not a child or an adult will get a particular genetic condition.

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PARRY

Chris, as the geneticist pointed out there, they wouldn't normally test Tom till around seven or eight, they'd screen him before this?

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HUNTER

Well in this condition the endocrine screening ...

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PARRY

Endocrine hormone screening.

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HUNTER

Yes, you measure serum, calcium and parathyroid hormone because the parathyroid hormone is the hormone which is most affected, earliest, in this condition.听 And that screening can take place by an endocrinologist.

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PARRY

Deborah, does screening differ from a genetic test ethically speaking?

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BOWMAN

I think it's no accident that there is a whole literature on genetics and the ethics of genetics.听 And I think there is a perception that it's different.听 And I think the way in which it's different is first of all, it's about, particularly in this case, giving some information which may be partial, so it's not like screening for a disease or treating something where there's an immediate benefit, it's giving information which may be relevant in the future.听 I think the other very important point is about the harms and benefits.听 With screening generally one - it's still a cascade and you may still find yourself on a path of treatment and perhaps dealing with things you hadn't necessarily expected but nonetheless there is still something about the genetic testing that is perceived as different, it's a label with potential implications.

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BARNES

I think the thing about genetic testing is that it can give you a yes/no answer.听 I think if we take MEN 1 and Tom's case for example, if a biochemical blood test could detect the early signs of a hormone disturbance that may indicate the presence of a tumour then we know that the condition has already occurred in Tom and some treatment is possible.听 I think that's a very important point.

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PARRY

So there would be a strong reason to go for testing?

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BARNES

Yes there would be a very strong reason to go for testing.听 If, however, a screening test is negative, if everything seems okay, what that tells us is that the condition is not present at the moment, it doesn't give us any predictive information for the future.

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HUNTER

And because that kicks in at a different time.

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BOWMAN

And I think that's the moral difference.听 That is exactly - can be perceived as morally advantageous but also morally concerning.听 And I think that is why it's perceived as different in the ethics literature as well.

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BARNES

Yes I agree.

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PARRY

Alison, is it the only reason that is valid for a test, a genetic test in a child, essentially that it will help the child in terms of treatment?

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HUNTER

Yes, it's always got to be the child's best interest.听 I mean some genetic tests are done, not in this situation, for - if the future children of the couple who have a child with an abnormality, I mean there's pregnancy testing done for foetal abnormality.听 But for the child itself the main interest is the child's best interest.听 So it's got to be treatment or prevention of further disease.听 And usually when it occurs in adulthood, as we've said already, it should always be left to the child to have a say when it's confident that it wants the test or doesn't want the test, like in Huntingdon's Disease.

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PARRY

I mean you could just leave this until Tom's of an age to decide for himself surely?听 What's wrong with that?

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BARNES

Well I think - I've certainly been involved in discussions with nine, 10 year olds and I think the difference is that at that age children can understand an awful lot about the condition and the circumstances that they actually couldn't understand when they're two months old or 20 months old.听 They perhaps can't give full consent but they can give assent, they can agree to a test, they can know what it's being done for, they can discuss with their parents whether or not this is in their best interest.听 In fact they can actually do a lot to - and certainly genetic counsellors in this situation, genetic counsellors can help a lot by having those discussions with the child with the family.听 And that's one of the things that we were very keen to offer when I worked at Guy's.

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PARRY

Deborah, at what age can a child give consent for testing of that sort?

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BOWMAN

Well it's not age related, it's a functional test, it's about understanding.

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PARRY

So this is the famous Gillick competency?

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BOWMAN

It is indeed the famous Gillick competency, absolutely.

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PARRY

Would you explain what that is?

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BOWMAN

Very briefly, Gillick competency relates to a judgement that was given in the case brought by Mrs Gillick who was concerned about the choices her teenage children might make about their health and it decided - the judgement was that children who had sufficient understanding, broadly speaking, and couldn't necessarily be persuaded to involve their parents and were seeking some sort of advice or treatment or testing even that was in their best interest, physical or mental, could give consent themselves.听 Now having said it's not age related unless it's a functional test, and that's very important, clearly the older a child is the more likely he or she is to be able to have sufficient understanding.听 But there are examples of really quite young children having very good understanding particularly where they have a chronic disease, so something like cystic fibrosis.

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HUNTER

Because they've experienced what the outcome of that disease is and what tests they have to have, what physio, what blood tests and they've got an understanding of the reality of the practicalities.

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BOWMAN

And the very process of actually assessing whether a child can consent will mean that you give them information to make them better able to express preference, even if ultimately they're not consenting.

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PARRY

But has a child a right not to know this information?

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BARNES

I believe so, yes, I believe an adult has a right not to know, a child is a future adult and I think it is incumbent upon us to protect that child's future. 听The saying is that a child - every child should have what's called an open future, we shouldn't in any way restrict that future by doing a test they can't understand or consent to.听 And certainly the consensus view in clinical genetics is that is why we should only test adults unless there are very specific circumstances why it would be medically beneficial to test a child.

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PARRY

But presumably the parents may often want this information and really be quite determined to get it.

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BARNES

They often do, yes, and I can understand why they want that information.听 Certainly sometimes what parents actually want is not a genetic test, they want more information about the condition, they want some kind of support to enable them to be able to talk to their child about the condition in the family as the child is growing up.听 We had a motto at Guy's which was along the lines of no testing, does not mean no talking.听 And I certainly saw a lot of parents, whilst their child was growing up, who really wanted to have some idea of how to raise the subject of the illness in the family with the child themselves.听 We routinely offered families an appointment when the child was in their teens so that this process could be aided by genetic counselling.

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PARRY

It's almost as if parents thought that genetic testing was a magic wand which would give them a kind of sudden insight and it would all be marvellous.

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HUNTER

I'm afraid it's often seen as a fairly black and white issue and it's often isn't anywhere near a black and white issue.

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BARNES

I think that's right and I think that there's often a misunderstanding at what a genetic test can actually achieve, what information it will give you.听 And people feel that testing will provide some sort of certainty about a child's future and what we know, particularly in a condition like MEN 1 is that it won't give that.

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PARRY

And what about this issue of confidentiality Deborah, who owns this information?

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BOWMAN

Confidentiality in children is very difficult because actually it's poorly understood and it's poorly conceptualised in the ethical legal literature.听 Essentially the default position is that parents or people with parental responsibility or in this case those caring for Tom hold the information in good faith, so they look after the information.听 But it is true that it is Tom's information.听 And as somebody matures, with Gillick competence, goes all the rights an adult would have in relation to confidentiality.听 But I think that Tom, particularly, because he is in care there is probably some ambiguity about who legally owns it.听 Ethically I think the information is Tom's.听 The difficult of course is that Tom can't protect that, he's relying on somebody to do that for him and it sounds as though that's what the clinical team are very keen to flag up.

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PARRY

You're listening to Inside the Ethics Committee on 麻豆约拍 Radio 4.听 We've got some measure there of how complex genetic testing is in children, and now we're going to crank up the ethical dilemmas even further by adding adoption to the mix.听 We're going to talk about that in a moment but let's first here more from the genetics team in this case about their reservations on testing Tom.

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FIRST GENETICST

We weren't quite sure what the agenda was, whether there was any, like a judging agenda, putting higher or lesser degree of worth to the child by labelling it - this is a little boy who carries a gene predisposing him to something potentially horrendous.听 Which is not true for most people.听 Where this is a boy who may have a family history but he doesn't carry this gene and so he is worth slightly more, roughly speaking.

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PARRY

Oh dear, some really uncomfortable issues there about听 the value of a child with - that's the bottom line isn't it - the value of a child with a condition and the value of a child without a condition, just awful.听 What I want to do is, if we can, is let's look at the arguments against testing and the arguments for testing.听 So let's start with you Alison and against testing, what are the disadvantages?

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HUNTER

We shouldn't be testing a child earlier than the child and his birth family for reasons of adoption or adoption can be seen as being conditional on a negative result, a normal result.听 And that's ethically not right.听 All adopters need to deal with uncertainty.

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BARNES

I think the principle of equity is very important and I think central to this case.听 There is no reason, it seems to me, why children should be treated differently just because they happen to have the misfortunate of not being able to be with their birth parents.听 In order to test Tom I would have to be totally convinced that he would be disadvantaged in terms of placing him with suitable adoptive parents in the future.听

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HUNTER

And adopters have to live with uncertainty, we have children all the time who we don't know their paternity, we don't know lots of bits and pieces about their family history and I counsel adopters all the time about children I'm placing with them and explain the uncertainty in a lot of depth and they have to be able to take that on board.

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PARRY

Deborah, what are - first of all - for you the points against this?

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BOWMAN

Well I think, really just extrapolating from what both Chris and Alison have said, it's about the potential commodification of a person, that this child, Tom, is being afforded value for reasons other than simply that he is a boy, that he is a child.听 And there's a long tradition in ethics of not doing that, people are not a means to an end, be that end adoption, or anything else.听 They are valuable in their own right and their value doesn't increase or diminish according to any disability, disease, etc.

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PARRY

But is there an argument, let me argue now the other side, is there an argument though that knowledge of his condition might help in placing him because presumably one would want him placed with a family who were able to cope with, for instance, frequent hospital visits?

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BOWMAN

Indeed knowledge - I absolutely wouldn't argue against that - but what I would say is a. the knowledge has to be honestly represented, and I think we've already heard the various ambiguities about that and b. knowledge doesn't equate to elimination of risk or uncertainty.听 There may be multiple reasons why a child is challenging to a family, be it a birth family or an adoptive family, and I think there's something here about that being a very dangerous path down which to go.

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PARRY

I mean doesn't the state have an ethical responsibility to find the best possible home for a child?

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BARNES

Yes I think the state does.听 I would query, however, that genetic testing would enable them to do that any better than a family knowing that a child was at risk of this particular inherited disease.听 I think it's imperative that Tom is placed with a family who understands the information about the condition and what it might mean for Tom in the future.听 And also I think clinical genetics departments can help in that a lot by we're very happy to see people who are considering adopting children with certain problems and certainly that's something that I have done in my clinical practice in the future.

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HUNTER

And so have I and that's my view as well, if you give adoptive parents full information, you explain in depth what the possibilities are - there may be a worse case scenario, it might be something that does happen in the future - I usually will involve my genetic colleagues as well.听 And I have found we have placed many children with potential genetic issues openly with adopters with them having full information and they have gone ahead and adopted.听 And I believe there's evidence that happens across the country.

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PARRY

And there's a big difference though here isn't there between risk and certainty?

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HUNTER

Yes but we have to live with uncertainty, we haven't got certainty in our birth children.

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PARRY

No, I mean we haven't - none of us know when we have children what we're letting ourselves in for.

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BARNES

That's right and also for reasons that we've explained genetic testing doesn't actually provide a great deal of certainty.

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BOWMAN

And I think that it's perfectly possible to put Tom into a house or a home that can quotes "look after him", simply by knowing that there is a chance he may become unwell.听 The test doesn't mitigate against the best possible home for Tom being alert to the possibility that he may subsequently develop problems.

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PARRY

I mean there might be a worry that if you were doing genetic testing of this sort that you would have a large pool of unmatchable children - people who would not be taken on by anybody which seems just awful.

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HUNTER

That's another argument for not testing because we may advantage the child who doesn't have the gene but you may hugely disadvantage the child who does have the gene.听 And in a situation of uncertainty, as Chris has explained, that is not in the best interest of those group of children.

听

BOWMAN

And certainly with adults we know that in the earlier days of genetic testing we were at risk, potentially, of creating a class of people who were uninsurable and I would see that as a parallel situation with children and adoption.

听

PARRY

Alison, what are the special circumstances of adoption, I mean what are prospective parents entitled to know about their child?

听

HUNTER

Well they're entitled to know the full information that the local authority have about the child's background.听 That's often partial.听 I do my best to investigate and research and dig up as much information as possible.听 I go to huge lengths to give adopters full information. I meet them in the flesh for about one and a half hours and explore things as far as I can.听 There are limits - social services don't always have full information and we're limited by consent but we can go a certain distance to try and explain the risks for adopters and in my experience if you spend time doing it and do it well you can have a good outcome for the child.

听

PARRY

But let me play devil's advocate here.听 What harm is being done in Tom having this particular test a few years early?

听

BOWMAN

He's being treated differently from other children of his age.听 I think that's significant.听 It may not be a harm to Tom, although actually I would perceive it as a harm to Tom, I think it's discriminatory actually.听 He's having a test in a way that perhaps is going to set up expectations in the home in which he may eventually be placed that are inaccurate.听 And ultimately he will have potentially a diagnostic label that may cause him stigma and may affect his self image.

听

BARNES

I can only agree with Deborah on this point.听 We do know from both anecdotal clinical experience and some research that giving children genetic labels very early in their life when that is not necessary can be very deleterious to the child.听 It can affect family relationships and it can affect how that child is treated within that family.听 And also the child's expectations of him or herself.

听

PARRY

Is there any information about how this knowledge affects the actual adoption process, I mean does the genetic information make people less or more likely to adopt?

听

BARNES

I probably would pass that question to Alison but certainly my understanding, from my work with the British Association of Adopting and Fostering a few years ago, is that there is no evidence that genetic testing has any effect on the placement of a child.

听

PARRY

Deborah, is there a moral difference between medical information, I know genetics is medical but between medical information and genetic information?

听

BOWMAN

I mean genetic information has been seen as different, we have a Human Genetics Commission, we have all sorts of organisations - Gene Watch - all sorts of people who are very concerned and preoccupied with genetic information.听 I think partly that is a function of it being new, everybody feeling their way, and quite rightly there is a need to look closely at what happens in this field.听 But I think also there is something about it being seen as somehow core, separate, different, and the slight crystal ball potential that it has.听 I also think it's perceived as a scientific development that conjures up images, all sorts of images, we hear about and it's not what we're talking about today but the issues of things like genetic engineering and cloning, they all get thrown in, if you like, to the genetics pot.听 So one of the ways in which governments and healthcare providers and researchers have protected the public and shown their hand, if you like, and their good intent, is to say well we understand this is very special information and we really, really look after it.听 Of course the default position should be that all healthcare information is really, really looked after but a special case has been made.

听

PARRY

And of course once genetic information is out of the bottle, as it were, it can't be put back in again.

听

BOWMAN

Absolutely and I think that's so important in this case because actually once this - once you know something you can't unknow it.听 So at some point somebody will have to share that information with Tom and he then can't then not know it, he can't - he won't have a choice and I think that's the difficulty about him not being involved because it seems to me one of the key issues, when you're thinking about genetic testing, is to say somebody have you thought about what might follow, the sequili of the decision you're going to make now, have you thought about that because you can't not know it once it's out there.

听

PARRY

And it's something we've discussed in previous programmes, particularly that if you have a condition that's really serious that doesn't appear till much later in life you might not want to know.

听

HUNTER

I believe people with Huntingdon's Disease, adults who are given the choice, a large number of them choose to not be tested.

听

BARNES

That's right, we know that from clinical experience that the vast majority of people who are at risk of these late onset disorders do choose not to be tested.

听

PARRY

Because it would seem to people listening, who are not in that position of having to make a decision about testing, that everybody would want to know but of course they would want to know about their own condition but that's not the case is it?

听

HUNTER

Depends on the condition hugely as well.

听

BOWMAN

And I think it's no different from that - well maybe it's only me - but that game you play with your friends - would you want to know how you're going to die and when, most of us say no, how awful, you'd be living waiting for that moment, you do things differently.听 It becomes a lens through which you potentially see your life and that's not a decision to be taken lightly.

听

PARRY

But on the other hand Tom's condition could have a childhood onset.

听

BARNES

It could, it would be unusual but yes it could, it's possible.听 And that is why screening is begun in childhood, at quite young.

听

PARRY

And does that make a difference to this case, that there is the possibility of a childhood onset, rare though it might be?

听

BARNES

Yes I think it makes a difference, yes.听 If you take a condition like Huntingdon's Disease childhood onset is extremely unusual, it is perhaps slightly more usual in a condition like MEN 1, although it's still very unusual.听 But the fact that it can occur in childhood means that instituting screening at the proper time is very important.

听

BOWMAN

But I think that's key isn't it, it's about the proximity, to make the moral case you have to be proximate, so there has to be some relationship between the time at which you test or screen and the benefit, rather than there being in this case potentially a gap of some years.

听

PARRY

Okay, so now I've got to ask each of you whether you would give the go ahead for testing or whether you would refuse? Let's start with Chris.

听

BARNES

I would not want to test Tom.听 I would, however, want to make sure that as a genetic counsellor I kept in touch with him and his family so that screening could be instituted at the appropriate time and that we could have a conversation about what this condition meant and what it meant to Tom at an age appropriate time.

听

PARRY

Alison.

听

HUNTER

I would not to test Tom at the age of 15 months, I would be agreeing with Chris that I would like it to happen later with involvement with his adoptive family and himself at the age when screening would normally start.

听

BOWMAN

Oh yes me too I'm afraid.听 I wouldn't want to screen Tom either.听 I feel very uncomfortable about the implications for his status as a child in his own right and the potential value afforded to it and I also think that in order to make the moral case for testing it has to be proximate to benefit and it isn't in this case.

听

PARRY

So can I thank the three of you:听 Chris Barnes, Alison Hunter and Deborah Bowman?

听

So what happened in real life?听 After a lot of thought Catherine, that's Tom's foster mother, said she was keen to adopt him.听 She knew he might carry the gene but was happy to adopt him either way but she wanted to have him tested.听 The local authority obtained a court order obliging the genetics service to test Tom.听

听

But after more discussion the court order was repealed.听 However, 18 months later there was a second court order and this time the test was done.

听

FIRST GENETICIST

We were given the impression that there was very little doubt that Catherine would not become the adoptive mother and they would not go ahead and complete the case quite speedily.听 There was still some moral dilemma that I still believe has not been resolved.听 There was no legal way - I had to follow the court order - we had negotiated for about 18 months, which had helped to wait long enough for Tom to be even closer to the age when clinical screening would be appropriate under certain considerations.听 In a perfect world it would have been preferable to separate the adoption process from the genetic testing process.听 We had tried for almost a year and a half to keep the two things separate.听 I'm not fully convinced that it was in his very best interest to really do it at the time when we did it, so we followed the court order, Tom was tested and he was shown to carry the gene change.听 Catherine has adopted him and she knows that she will contact the department to plan for his screening the moment he's five years old.

听

PARRY

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/radio 4 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

On the programme next week, when is the right time to tell a child they have a serious medical condition? And what happens when a mother's refusal to tell jeopardises her child's chances of getting better?

听

ENDS