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Huntingdon’s disease and testing children

A hearbreakingly sad, but interesting High Court case recently grappled with a very difficult issue

 Re Y and Z (Minors) 2013

 http://www.familylawweek.co.uk/site.aspx?i=ed113400

 

The substantive issues in the case, that the children could not be safely placed with either parent, or within the birth family, were resolved, but the subsidiary and important issue remained that the father was asserting that he, himself, had a family history of Huntingdon’s disease and might potentially have it himself  and could have passed it on to the children. And should therefore, the children be tested for it?

 It is obviously a very serious illness, and is passed down genetically. Anyone whose parent has the disease has a 50% chance of inheriting it. (Thus, if one of the father’s parents had the disease, he had a 50% chance of having inherited it, and the two children each had a 25% chance of having inherited it)

 The faulty gene causes damage of the nerve cells and areas of the brain which in due course leads to physical, mental and emotional change. 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. The symptoms usually emerge when people are between ages 30 and 50, although in some rare instances they arise at an earlier stage. The extent of the symptoms varies from person to person. In the later stages of the disease, the physical and mental disabilities can become profound and, if so, much care and support is required.

 There were, therefore, no immediate consequences for either of the boys concerned, they were 3 and 2 respectively, and were thus many many years away from developing symptoms  [although there could of course be the rare case of earlier onset]

 However, given that the care plan for the boys was adoption, there was a tension between whether there should be a test conducted, so that the boys adoptive carers would know definitively whether one, both, or neither were going to develop Huntingdon’s disease; or whether the counter argument, that the decision as to whether or not to undertake a test is one that rests with the individual concerned and that should not be decided until the individual was of an age to make that an informed decision.

 In essence – is the right of the carers to KNOW more important than the right of the child/person to decide that they don’t WANT TO KNOW?

 It is more complicated than something like, say, testing for diabetes or fragile X syndrome, as the knowledge that you have a disease that will active at some point probably in your 30s and will have a profound effect on your quality of life, must be something which weighs immensely heavily on you. If it were you, would you want to know and be able to prepare for it, or would you rather not know and just live your life under a potential shadow? I don’t know how I would make that decision, and am thankful that I will never have to.

(1)   Social Worker’s Evidence
12. The evidence about the prospect of adoption was provided by the operations manager of the local authority’s adoption team, SS. She has very considerable experience in the social care field including adoption. She was asked to advise as to the prospects of placing the boys for adoption. It is her evidence that, if Y and Z do not have HD, the local authority should be in a position to identify an adoptive placement for them within six months. Although it is more difficult to find adoptive placements for sibling groups, the fact that the boys are young should be a positive factor when seeking such a placement in this case. At present, this local authority has two families approved for a sibling group of two children, together with others whose application to be approved are in the pipeline. In the event that the local authority is unable to find such a placement from its own resources, it is able to widen its searches to seek to find a suitable family from within the region or nationally.

13. SS advises that if, either of the boys have the gene for HD, this will make the task of identifying an adoptive family much more difficult. It is her experience that many adopters are unwilling to offer a home for two children where there is a serious medical condition. SS has consulted colleagues working on the National Adoption Register who expressed a similar view.

14. If no test is carried out, so that it remains uncertain as to whether the boys have the HD gene, it is SS’s experience that this, too, will make it difficult to identify adopters willing to offer the boys a placement

 

[For what it is worth, I think that’s probably right – bizarrely, I think there is probably a BETTER chance of finding adopters who would take children on with the disease than who would take them on knowing that there was a CHANCE they would have the disease but no certainty] 

 And the Judge was also taken to the BAFF guidance on genetic testing

 

 

33. Finally, the parties have referred me to a paper produced by the British Association for Adoption and Fostering (‘BAAF’) in 2006 headed ‘Genetic Testing and Adoption’ which makes the following comments about genetic testing, adoption and the rights of children:

“In all circumstances, the best interests of the child must be paramount. However, in adoption proceedings it can sometimes be difficult to judge whether a particular course of action is in a child’s best interests. Each situation will need to be judged on its own merits, taking a number of factors into consideration.

• All children have a right to information about their genetic heritage. Adoptive children who through circumstances beyond their control are not living with their birth parents must not be further disadvantaged by being denied this information.

• Most looked after children, even those from high risk backgrounds, are healthy. Neither birth nor adoptive parents can be ‘guaranteed’ a perfectly healthy child who will develop normally. All parents have to live with risk.

• Potential adoptive parents have certain rights. These rights include the right to be given relevant family history and a full health and developmental profile of the child they are considering adopting.

• There is no evidence that collecting extensive family histories and discussing the potential risks to a child in detail before placement either deters adopters or delays a placement.

• ‘Matching’ a child with informed, well prepared and supportive adoptive parents is the best way of ensuring a successful adoption placement.

• All children, whether they are living with their birth families, being looked after by local authority or adopted need protection from the potentially negative effects of genetic testing. Therefore, wherever possible, unless there are convincing indications to the contrary, looked after children should have the same rights as children who are living with their birth families. The threshold for testing should be the same. Testing should never be undertaken to make a child more adoptable.”

 

A particular complication in this case was that although the father had thrown this hand grenade into the court room, he hadn’t produced any evidence as to his own medical records or the medical situation of his family.   (My starting point when reading this case was that you would test the father to see if he had the gene, rather than testing the children, since if he doesn’t have it, the issue simply falls away. You will see, however, that the father decided that he didn’t want to be tested, and of course the Court can’t compel him to do so. And drawing an inference from that, isn’t much help, since one is not interested at all in “forensically” do these boys have the Huntingdon disease gene, you want to know if they “actually” have it)

 

 

(2)   Evidence of HD in the family
16. There is no conclusive evidence, in the form of medical reports or records, demonstrating that any member of this family has HD. All we have are the assertions made by the father that his mother and brother have the disease and that he himself has symptoms consistent with it. No statement from the father’s mother or brother has been put before the court, nor have their medical records been produced. The father has given inconsistent accounts about his own condition. At the case conference on 6th March 2012, he stated that his mother and brother have been diagnosed with HD and that he suspects that he has the condition as well. He has told the police that he has the disease, but told the health visitor that he does not. In his position statement in these proceedings, the father says that he does not know if he has the disease and is himself unwilling to undergo the test.

17. There is therefore some uncertainty about whether the disease is indeed present in this family, and the local authority invites the court to take that into account when making an analysis of the probability that these children carry the gene.

 

 

The Court had some beneficial evidence from Professor Patton, a geneticist (and I would hope that no matter how far we go down the ‘necessary’ route in deciding whether to commission an expert assessment, it will still be available for this sort of specialised thing which is clearly outside the common experience and skillset of the social worker and guardian)

 

21. If the individual is referred for predictive testing, it is Professor Patton’s practice to meet the patient, go through the family history in detail, and try to confirm the diagnosis. He then discusses the nature of HD in terms of its neurological and psychological features, stressing that there is at present treatment but no cure. He discusses the pros and cons of predictive testing and goes through the reasons why people at risk may choose to take the test, for example to reduce uncertainty, because they wish to start a family, or to deal with issues about insurance and employment. He draws attention to the progress in  research and informs the patient that it is his view that there may be new approaches to treatment that will alleviate the condition. After this preliminary consultation, Professor Patton allowed the patient a period of about a month to consider the points raised. Thereafter, if the patient wishes to proceed, the test is taken and the results are available within 4 weeks.

22. Professor Patton helpfully appended to his report and these proceedings a report of a working party of the Clinical Genetics Society (UK) headed the ‘The Genetic Testing of Children’ written in 1994 (J Med. Genet., 1994, 31:785-797), which dealt with a range of genetic disorders. The conclusion and recommendations of the report include the following:

“(1) The predictive genetic testing of children is clearly appropriate where onset of the condition regularly occurs in childhood or there are useful medical interventions that can be offered….

(2) In contrast, the working party believes that predictive testing for an adult onset disorder should generally not be undertaken if the child is healthy and there are no medical interventions established as useful that can be offered in the event of a positive test result. We would generally advise against such testing, unless there are clear cut and unusual arguments in favour. This does not entail our recommending that families should avoid discussing the issues with younger children, but rather that formal genetic testing should generally wait until the ‘children’ request tests for themselves, as autonomous adults. This respect for autonomy and confidentiality would entail the deferral of testing until the person is either adult, or is able to appreciate not only the genetic facts of the matter but also the emotional and social consequences of the various possible test results.

In circumstances where this type of testing is being contemplated, there should be full discussions with both the family and between parents and genetic health professionals (clinical geneticists or non-medical genetic counsellors); the more serious the disorder, the stronger the arguments in favour of testing would need to be.”

23. The working party identified a number of possible advantages and disadvantages of predictive testing in childhood set out in a table at page 790. The advantages included

(1) Relieves anxiety about possible early signs of the disorder.

(2) Family uncertainty about the future is reduced.

(3) More accurate genetic counselling becomes possible.

(4) The child’s attitude towards reproduction in adulthood will be more responsible.

(5) Children who might benefit from genetic counselling in the future might be identified.

(6) Practical planning for education and career, housing and family finances becomes possible.

(7) Parental expectations of the child’s behaviour become altered.

The possible disadvantages included

(1) Removes the child’s right to decide whether or not to be tested in adulthood.

(2) Parental expectations of the child’s future reproductive behaviour become altered.

(3) Damages the child’s sense of self esteem.

(4) Generates unwarranted anxiety about possible early signs, before any genuine manifestation of the disorder.

(5) Leads to future difficulties in obtaining life insurance.

(6) Rarely leads to clarification of the genetic status of other the family members.

24. The working party addressed in particular the merits of genetic testing in respect of children who are being considered for adoption. In such cases, the arguments for testing, in addition to those set out above, include the specific point that appropriate carers may more easily be found for the child. Arguments against testing, in addition to those identified above, would include specific points relating to adoption namely ‘that the diagnosis will label the child and affect the (already difficult) process of identity development [and] that it is irrelevant to the needs of the child for the acceptance as he/she is…..’ The working party continued:

“The arguments will have to be made in each case, but their force will not differ greatly from the standard case of a child in the original birth family, unless it proves difficult to find suitable prospective adoptive parents for a child at risk of a late onset genetic disorder because of the uncertainty surrounding the child’s possible genetic status when either the decision to put the child forward for adoption, or the decision about genetic testing, will need to be reconsidered. In practice, this situation may arise infrequently, but will call for a careful consideration of the child’s overall best interests when it does so. In general, it would seem best, wherever possible, to find adopters who can accept the child as a whole, and subsequently participate in any testing that is appropriate for the child as a confirmed member of their family.”

25. In addition, Professor Patton appended a more recent report, produced for European Huntington Disease Network in 2012 (to be found in Clinical Genetics, 2012) entitled ‘Recommendations for the predictive genetic test in Huntington’s Disease’. These included (as recommendation 2.1):

“It is recommended that the minimum age of testing be 18 years. Minors at risk requesting the test should have access to genetic counselling, support and information, including discussion of all their options for dealing with being at risk.”

To this recommendation, the authors of the document append this comment:

“Testing for the purpose of adoption should not be permitted since the child to be adopted cannot decide for him/herself whether he/she wants to be tested. It is essential, however, that the child should be informed about his/her at risk status.”

 

 

The Court obviously had to give this evidence quite a lot of weight, and even went on to muse about the circumstances in which the Court would ask a medical professional to undertake an exercise or assessment that the medical profession as a whole was not comfortable with.

 

it is submitted that the court should be slow to go against the clearly established position of the medical profession on this issue. On behalf of the guardian, Mr Watson reminds me of the dicta of Lord Donaldson in Re J (A Minor) (Child in Care: Medical Treatment)  [1992] 4 All ER 614 at page 622:
The fundamental issue in this appeal is whether the court in the exercise of its inherent power to protect the interests of minors should ever require a medical practitioner or health authority acting by a medical practitioner to adopt a course of treatment which in the bona fide clinical judgment of the practitioner concerned is contra-indicated as not being in the best interests of the patient. I have to say that I cannot at present conceive of any circumstances in which this would be other than an abuse of power as directly or indirectly requiring the practitioner to act in contrary to the fundamental duty which he owes to his patient.”

42. I remind myself, however, that, whilst the court must pay particular attention to expert evidence, the ultimate decision is a matter for the court since it is the court which alone has all the evidence upon which to make the decision: A County Council v K D and L [2005] EWHC 144 (Fam) per Charles J at paragraphs 39 and 44

 

 

The Judge therefore carried out a balancing exercise, summarising the benefits and disadvantages of testing (which may be useful in any subsequent case where this issue arises)

 

44. The principal arguments in favour of testing seem to me to be as follows. First, and most importantly, a decision not to direct genetic testing will reduce the number of prospective adopters for the boys. I accept that, if Y and Z cannot be returned to the care of their parents, it is in their interests to be found permanent placements that provide them with as much security as possible. In most cases, adoption is the option that provides the greatest security. In every case, however, an assessment has to be made as to which outcome meets the needs of the children. I accept the opinion of SS and the position of the local authority that, if the tests are not carried out, it will be significantly harder to find adoptive placements for the boys. I do not, however, accept that it will be impossible to find adoptive placements in those circumstances. The guardian considers that it is possible to find adoptive placements for both boys and that accords with this court’s experience of cases involving children being placed for adoption. Many children with profound disabilities are successfully adopted. Nevertheless, I accept that it will be significantly more difficult to find adoptive placements and that this is a factor that points in favour of authorising the genetic testing at this stage. Furthermore, 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.

45. There are, in addition, other factors in favour of authorising testing in this case. As a general rule, all children have a right to be brought up with knowledge of their background and inheritance. Unless and until testing is done, there will always be uncertainty which will affect the children’s carers and in due course the children themselves. I note the point made in the research literature that, as children are not, as a matter of course, tested and thus do not acquire knowledge about the genetic inheritance until they have become adults, the medical consensus against testing in these circumstances is substantially based on assumptions about psychological and social harm rather than empirical evidence. In addition, although there is no course of counselling specifically designed for children to assist them to come to terms with the knowledge that they will develop a serious disease in adult life, it would obviously be possible to devise a course drawing on counselling that is given in other circumstances.

46. On the other hand, there are a number of cogent arguments against carrying out testing in these circumstances.

47. First, it is the general practice not to provide genetic testing to children to determine whether they have a condition whose onset occurs in mid adult life where there is no treatment which could be provided in childhood. I accept the evidence of Professor Patton, who is a world-renowned expert in this field, that it is generally recognised that it is contrary to the interests of the patient for testing to be carried out under the age of 18. Professor Patton describes in careful detail the preparatory steps he takes with all patients prior to a decision being taken about testing. Those steps require the patient to have the capacity to comprehend and reflect on the issues before taking the decision. Professor Patton also describes the programme of therapy and counselling available for dealing with adults who have been diagnosed as having the gene, and for helping them come to terms with the risk of psychological harm and the sociological and economic consequences of the diagnosis. Although as stated above I think it likely that a course of counselling could be devised for children in these circumstances, I accept his evidence that there is currently no set or recognised process for addressing the risks of psychological harm which, I find, will be likely to arise.

48. Secondly, and following from the previous point, I accept the principle that it is undesirable to treat children differently simply because they are being considered for adoption. I accept the argument set out in the BAAF paper quoted above that all children, whether they are living with their birth families, being looked after by local authority or adopted, need protection from the potentially negative effects of genetic testing. Therefore, wherever possible, unless there are convincing indications to the contrary, looked after children should have the same rights as children who are living with their birth families. Save in exceptional circumstances, all other children will be given the opportunity to decide for themselves when they are older whether or not they should have the test. To order testing of Y and Z at this stage would deny them the right to make their own decision when they are older. I reject the submission that this point should carry little weight because it is based on personal autonomy. Manifestly, personal autonomy is part of the characteristics of a child, and thus a factor within the checklist in s.1(3)(d) to be taken into account in any assessment of his welfare. Furthermore, personal autonomy is an integral aspect of a person’s right to private and family life under Article 8. As Dame Elizabeth Butler-Sloss P observed in NHS Trust A v M [2001] Fam 348 at para 41 ,”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)”. More recently, the European Court of Human Rights has observed in Jehovah’s Witnesses of Moscow v Russia [2011] 53 EHRR 4 (at para 136) that : “The freedom to accept or refuse specific medical treatment, or to select an alternative form of treatment, is vital to the principles of self-determination and personal autonomy.”

49. Thirdly, as already stated, whilst I accept that it may be harder to find an adoptive placement if there is an unresolved possibility that the boys may carry the HD gene, I do not accept that it will be impossible to find such a placement. Adopters are found for children with profound disabilities with reduced life expectancy. Here, it is very unlikely that a child carrying the gene will develop the disease until mid life. A crucial component of any search for adoption is educating those who come forward. I agree with Professor Patton’s view that prospective adopters should have the option of knowing more about the disorder and in particular how today’s research is leading to the possibility of treatment in the future.

50. Finally, when children have been removed permanently from their birth family, it is important, if possible, that they be placed permanently together. As stated above, there is a significantly greater risk that one boy will be found to carry the gene and the other not. In those circumstances, there is, on the basis of the local authority’s plans, a significant prospect that these children will ultimately be separated. Such a course would not only cause emotional harm to each boy by separating him permanently from his brother but also be likely to cause additional harm to whichever boy is left in foster care in the form of psychological harm through having to grow up with knowledge for which he may not be prepared and the risk of severe damage to his self-esteem. I accept the view of the guardian, and the parents, that this course should be avoided if possible and that the children can be placed together.

51. Balancing all these factors together, I have reached the clear conclusion, on the facts of this case, that it is not in the welfare interests of Y or Z for the court to order testing to establish whether they are carrying the gene for HD. The risk, identified in the consensus of opinion amongst professionals working in this field including Professor Patton, of emotional and psychological harm to the boys if one or both of them has the gene, including the risk of separation of the siblings and the damage to their personal autonomy by being deprived of the right, available to all other children, to decide for themselves when they reach adulthood whether or not to undergo the test, outweighs the risk of harm arising from the likelihood that it will be harder (though not, in my judgment, impossible) to find an adoptive placement if genetic testing is not carried out.

 

 

 

Of course, what the Court was dealing with here was a condition for which a reliable test exists,  and the illness/disease being asymptomatic during childhood, AND of course, the illness/disease had no prospect of being passed on other than in a hereditary way.  It would be, I suggest, less easy to predict the outcome where a parent in such a case posits the suggestion that they are, say HIV positive.  One could argue again, that the young person has the RIGHT NOT TO KNOW and to be able to decide whether or not to be tested when they are old enough, but there might be medical treatment or interventions, or sensible precautions that ought to be taken. That seems to me to be potentially more finely balanced than this one was. Nonetheless, this case seems to me a very good starting point for any debate about testing children for serious illnesses.

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About suesspiciousminds

Law geek, local authority care hack, fascinated by words and quirky information; deeply committed to cheesecake and beer.

3 responses

  1. 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?

  2. Dear Suespicious,
    I would like to draw your attention to the recent Somerset LSCB Serious Case Review on Baby A and Baby B – twin babies born to parents who moved from one area to another, and would be classified as higher risk for several reasons.
    There are two points in this I would draw your attention to. The parents received “daily visits” – and the infants may have been abused during this time. At one point the summary said that these daily visits “may have raised their anxieties”. I can testify, from hundreds of innocent families who have contacted us, that these visits from social workers and health visitors, clearly intended as surveillance, cause enormous stress and anxiety, inhibit normal parenting, and leave long-lasting damage. Just suppose instead, this family had received real support – from a different model which has been proved to improve parenting – Family Nurse Partnership. Moreover a large randomized trial (gold-standard research) of social work in the USA has shown that what our clients call ‘the witch hunting model’ does long term harm, compared with an alternative supportive model.,
    Secondly, the report talks of increasing the rights of the unborn child. Already ante and post-natal surveillance has been shown to cause mothers to conceal mental illness, and to be associated with suicides of pregnant women and new mothers. It is actually killing women.
    There is ample evidence of the harm done in the USA from putting the child’s rights above those of the mother. The forthcoming issue of the AIMS Journal concentrates on the policing of pregnant women we have already.
    With best wishes,
    Jean Robinson, President, Association for Improvements in the Maternity Services (AIMS)

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