Genetic testing of children up for adoption
27 April 2013
Y and Z (Children), 25 April 2013  EWHC 953 (Fam) – read judgment
Having children is a lottery. No judge or court in the land would sanction the regulation of childbearing, however feckless the parents, unsuitable the conditions for childrearing, or unpromising the genetic inheritance.
Adoption on the other hand is stringently regulated, set about with obstacles for prospective parents, and strictly scrutinised by an army of authorities backed up by specialist family courts and a battery of laws, statutory instruments and guidance papers. Usually the filtering is in one direction only: the suitability of the parents to the child or children up for adoption. But sometimes it goes the other way, and this case raises the fascinating and somewhat futuristic question of whether children’s chance of finding a suitable home might be increased by genetic testing.
The circumstances were somewhat exceptional here, since the local authority had ascertained from the biological father of the two young boys in question that they might have a chance of inheriting a rare genetic disorder of the central nervous system. Huntington’s Chorea is caused by a single gene mutation on chromosome IV and causes damage of the nerve cells and areas of the brain which in due course leads to severe physical, mental and emotional deterioration. Anyone whose parent has the disease is born with a fifty per cent chance of inheriting the gene. Anyone who inherits the gene will, at some stage, develop the disease.
Legal and Factual Background
The children were accommodated by the local authority under Section 20 of the Children Act. The local authority filed an application for care orders in respect of both boys, and the matter was referred to the Family Division to determine whether the children should be tested for the HD gene. Since the children were at the time of the hearing only subject to interim care orders, the local authority did not have the power to proceed with testing without the court’s backing (Section 38(6) to (8) of the Children Act 1989).
So the issue before the court was a simple and stark one: was the welfare of each child require him to be subjected to genetic testing to establish if he has the gene for HD?
A complicating factor in this case was that there was no conclusive evidence, in the form of medical reports or records, demonstrating that any member of this family had HD. All the court had before it were the assertions made by the father that his mother and brother had the disease and that he himself had symptoms consistent with it, and both parties accepted that the uncertainty as to whether the father was carrying the gene meant that the chances of the boys having it were reduced. The outcome of this particular case may well have been influenced by this factor. But the question is still a difficult and interesting one, as advances in genetic testing make future risk of disease ever more predictable. For the moment, HD is one of the few disorders where genetic testing gives a definitive answer, because it can be traced back to a single gene mutation. When predictive testing is carried out, there is a clear answer in 98% of cases. There is no cure for HD yet.
So, getting back to the key question before the court, whether genetic testing would be in the children’s best interests, the instinctive response to this would be, of course not. Why would proof positive of a child’s propensity to develop a disabling and distressing neural disease, requiring expensive care for an unforeseeable time in the unpredictable future, increase his or her chances of being adopted? But the local authority took a much more nuanced approach to this dilemma, more realistic perhaps and arguably more humane. The arguments in favour of testing in these circumstances include the following points
- appropriate carers may more easily be found for the child
- family uncertainty about the future is reduced
practical planning for education and career, housing and family finances becomes possible
- all children have a right to be brought up with knowledge of their background and inheritance
- adoptive parents have realistic expectations of the child’s development and future behaviour
On the other hand, the consensus amongst professionals that testing for HD in childhood is inadvisable, largely on the grounds of the psychological effects on the child. The court took account of the expert geneticist’s view that the main reasons for not using predictive testing in a child were that it would not produce any medical gain for the child and, whilst there may be no medical harm as a result of the test,
there could be adverse psycho-social consequences from having a diagnosis of an adult disorder in the future. [The expert] highlights, in particular, the risk of discrimination, altered relationships with parents and siblings, and the removal of the child’s autonomy in making his or her own decision at a later and more relevant stage in his life.
In the end, these arguments won the day and Baker J concluded that not it was not in the welfare interests of Y or Z for the court to order testing to establish whether they were carrying the gene for HD. The court was particularly swayed by the risk that such testing would identify the risk in one boy and not the other, leading to the undesirable consequence that the siblings would be separated.
Is it right to attach so much importance to the damage to the personal autonomy of young children in these circumstances? To put it another way, was the balance properly struck, between their right to decide for themselves in adulthood whether or not to undergo the test, against their right to a suitable adoption placement where everybody is appraised of the facts? The judge acknowledged that it would be “harder (though not in [his] judgment impossible) to find an adoptive placement if genetic testing is not carried out”, and indeed the local authority had advanced evidence as to the greatly increased difficulty of finding an adoptive placement if testing is not done. Should more weight not have been attached to the local authority’s case that, from a welfare perspective, whatever the psychological consequences of testing, they were outweighed by the likelihood that an unknown diagnosis will significantly decrease the chances of a successful adoption? As Baker J acknowledges:
there is considerable force in the argument that matching children with adopters who are fully informed about the children affords the best opportunity for a successful placement.
Opposition in genetic testing in childhood where there is no direct or medical benefit is rooted in concerns to protect the future autonomy of the child, i.e. preserving the right of the child to make his/her own decision. On the other hand, it has been argued that parents have the right to make decisions on behalf of their children because they have primary responsibility for their child and they know their child best. Put in human rights terms, Article 8 cuts both ways in a case like this. On the one hand, as Dame Elizabeth Butler-Sloss P observed in NHS Trust A v M  Fam 348, Article 8 “protects the right to personal autonomy, otherwise described as the right to physical and bodily integrity. It protects a patient’s right to self-determination and an intrusion into bodily integrity must be justified under Article 8(2)”. On the other hand, Article 8 also imposes a positive duty on the state to respect the individual’s right to family life. That is what the local authority were seeking to do, to improve the children’s chances of a suitable placement by clarifying their medical future.
Of course there are adopters who cope with children with profound disabilities and reduced life expectancy. But these heroic people are much more likely to be found than to tip up by chance. It is not sufficient – as the expert argued in this case – simply to educate prospective adopters about the disorder and in particular how today’s research is leading to the possibility of treatment in the future, without giving them the opportunity to know whether this information is going to apply to their immediate family situation; why else would they be interested? Had this case not involved two children, with the potential for being separated as a result of the discovery that one carried the gene and the other not, it is highly likely that the court would have allowed the predictive testing to go ahead. As with most children cases, the ruling is very fact specific, as Baker J observes:
each case turns on its own facts and in some cases the balancing exercise will lead to a different outcome. It is to be stressed that this decision involves an untreatable condition which is unlikely to develop until mid-adult life. Cases involving conditions that develop during childhood, or which are susceptible to treatment in childhood, will involve a very different balancing exercise and are likely to lead to a different conclusion.
- Fine tuning medical diagnoses to rare genetic disorders
- From base pairs to the bedside: medical confidentiality in a changing world
- Should any genetic information be a trade secret?
- Can we keep our genomes quiet? Some suggestions from the US
- Can an individual claim ownership of life’s instructions?
- Should we outlaw genetic discrimination?
- What is genetic discrimination, and when and how can it be prevented
Bit of a side issue: but am I alone in thinking that the rights of insurers are being ignored here?
When I took out life insurance I was open about my family’s health history, so far as I knew it, but a lot of people are not and get away with it because insurers cannot investigate every claim in detail. As better tests become available I take the view that insurers should have the right to insist on them being taken and disclosed. I am not fazed by talk of an uninsurable genetic underclass – at the moment there are people who ought not to be insured but are and the loss falls on other policyholders who have nothing to disclose (lucky them) or disclose what they know and pay more (like me).
We don’t say that applicants for car insurance should not have to disclose their driving record in case it makes them uninsurable – why is life insurance different?
“No judge or court in the land would sanction the regulation of childbearing, however feckless the parents, unsuitable the conditions for childrearing, or unpromising the genetic inheritance.”
Indeed, that would be quite improper, even in the cases of the Royal Family and Tory MPs.
I find the reasons advanced by the local authority to be highly dubious and disingenuous and should more correctly read:
• how will this reduce the chances of finding appropriate carers for the child, or will the local authority have to provide care for the child for the rest of the child’s lifetime?;
• What will we be able to tell prospective adopters about how their future lives will be impacted, or keep hidden from them?;
• What will be the additional costs to the local authority if such a child is placed for adoption or remains in care?;
• “All children have the right to be brought up with knowledge of their background and inheritance” – this is absolute hypocrisy by local authorities as they frequently refuse to disclose such information to adopted children, the adoptive parents, and the natural parent who may be seeking to contact their child after adoption;
• Adoptive parents who take on a child with HD, what are the likely demands to be made on the LA by the adoptive parents in terms of services and additional costs;
All biological parents know that having a child carries certain risks of the child having a genetic disposition to certain diseases and illnesses, some present at birth from their own genetic factors or harm caused during pregnancy (effects of smoking, poor diet, alcohol/drugs, prescribed medication etc), then there are the many who suffer birth injuries from forceps and difficult deliveries, and others developing during childhood. Prospective adopters know they are taking the same risks. If this test for HD (Chorea) had been approved, then where would it have stopped?. Multiple Sclerosis genes, Motor Neurone disease, Haemophilia, Psycho/Neuropathy, Cancer etc etc etc.
In this instance, their Lordships were quite correct in their decision, except for the caveat by Baker J. What is the difference if the disease develops during childhood or adulthood?. Do parents suddenly stop loving and caring about their children when they become adults?. In fact many elderly parents are caring for an adult child with chronic illnesses and disabilities, and fearing the time of their deaths and what will then happen to their child.
I rather agree with Natasha’s comments on this fascinating report on a difficult case. I am struck by how often “the paramount needs of the child” is a mantra chanted but not observed in practice! True paramountcy is worth fighting for.
This is a thought-provoking post. I hate the thought of the power of the government over children and unfortunately that’s what happens with foster children.
I’m a little unsure as to why the Local Authority didn’t first ask the father to undergo testing in the first instance, why the focus was not on confirming his predisposition to the disorder first, if we are to go by the LA’s own reasoning. I think, unless I have misread the case or misunderstood (very possible), this tends to indicate that the LA were not really thinking about the welfare of the children involved but perhaps their perceived liability if, knowing there was a risk as they did, the adopted parents tried to sue the LA for not informing them of this risk. But then I don’t know whether they would do that as of right or whether they are bound by policy and law to do this.
This case makes me very uncomfortable. I don’t think I find it easy to accept that Local Authorities view their function in bringing such cases as altruistic or protective of the Paramountcy principle. I think that would be a naive view. The nuanced reasoning is, to my mind, perfectly rational, but perhaps not offered without agenda. Should that matter? I think it should. The arguments for and against the testing are both valid, but it may be commercially driven and that could have lead to highly unethical practice had the judgment in this case been different. It worries me that the commercial element doesn’t seem to have been discussed.
For me at least, the culture surrounding adoption is all wrong: loving a child is not dependent upon their genes, their physicality or their personality and the tension between housing children in care and finding children in care loving homes is all too great and tends to lean in favour of the former, inelegant agenda. I really hope we start to look at these cases differently and focus more on child welfare in the purest sense. And that may be naive, but that’s a silly dream worth fighting for.
I’m against such testing. It is now claimed genetic testing can reveal those more likely to commit crimes so where do we stop. If a child does show such a genetic ‘disorder’ and doesn’t commit crimes but has been denied a loving home because of said testing what rights will that child have to sue their keeper for their failure to provide such a home
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