Children’s welfare and genetic screening

 Introduction 

The science of genetics and genetic engineering has given rise to complex and problematic ethical issues from its beginning.  Infamously, pseudo-scientific gobbledegook in the form of phrenology was peddled in the nineteenth century to try and explain criminal behaviour. Even more infamously, pseudo-scientists attempted in the early twentieth century to use genetics to advance theories about racial differences.

In both cases the theories offered were subsequently discredited fairly easily on scientific grounds, without even needing to question the ethics or motivations of their proponents. Far from removing the ethical questions with genetic technology, however, just as many serious moral and ethical philosophical questions continue to arise with legitimate scientific advancement.

One example is that of genetic screening of embryos and people to detect potential diseases or other conditions.  On one episode of the BBC’s Moral Maze the question arose as to whether parents could or should screen embryos before IVF treatment and what might follow from that.  A representative of the deaf community opined that if both parents were deaf, they might wish to choose the embryo that would produce a deaf child, since they would be able to relate to the child better. This runs counter to what I imagine would be most people’s instinctive reaction – that an embryo should be chosen that would be the most ‘able-bodied’ to use a contentious description.  And yet the argument from the deaf parents’ perspective was a cogent one: life for a deaf person may be equally fulfilling and certainly is equally worthy of respect as for someone who can hear, and therefore the parents should not be denied their choice. 

On the other hand, suppose the parental choice is based on cultural norms that offend that of the majority: some London hospitals ceased telling parents the sex of unborn children because it was noticed that within some communities a disproportionate number of children born were male, and on further investigation it was found that abortions of female foetuses were commonplace. Here is a classic dilemma for a multicultural society: given that abortion is legal, did the state have the right to prevent parents from following a cultural preference for male children? (In my view: yes).

The case

Another question arose recently in the case of X County Council v a mother and others [2013] EWHC 953 (Fam), [2013] All ER (D) 231 (Apr). The case concerned two young boys (aged one and three) taken into the care of a local authority, with the intention that they would be adopted.  The father, as well as admitting violence in the home, said that both his mother and brother suffered from Huntingdon’s disease (HD).  There was a chance therefore that the children had inherited the gene, and the question arose as to whether they should be screened to confirm the question either way.

Huntingdon’s disease is a hereditary disorder of the central nervous system caused by a defective gene on chromosome IV.  The faulty gene causes damage of the nerve cells and areas of the brain.  Anyone whose parent has the disease is born with a 50% chance of inheriting the gene.  Anyone who does inherit the gene will develop the disease at some stage.  The symptoms usually arise between the ages of 30 and 50, though they may do so earlier.  The extent of the symptoms varies from person to person.  In the later states of the disease the physical and mental disabilities may become profound and, if so, the sufferer will require extensive care and support.

  

The local authority took the view that the children should be screened to see whether they had the gene or not, and applied to the court accordingly.  There was no dispute that the power of the court to order a medical or psychiatric examination or other assessment under ss 38(6) to (8) of the Children Act 1989 included screening for HD. It would of course only make such an order if it thought it was in the interest of the boys’ welfare. 

The judgment 

Baker J considered evidence from the social worker concerning the prospects of adoption; the evidence that there was that other members of the boys’ family suffered from HD; and the expert evidence obtained by the parties about HD. 

He recorded the principal arguments in favour of testing as follows. First, and most importantly, a decision not to direct genetic testing would reduce the number of prospective adopters for the boys - though it would not be impossible. The guardian considered that it was possible to find adoptive placements for both boys and that accorded with this court's experience. Many children with profound disabilities were successfully adopted. Nevertheless, it would be significantly more difficult to find adoptive placements and that was a factor that pointed in favour of authorising the genetic testing. Furthermore, his lordship felt that there was considerable force in the argument that matching children with adopters who were fully informed about the children afforded the best opportunity for a successful placement.

There were other factors in favour of authorising testing. As a general rule, all children had a right to be brought up with knowledge of their background and inheritance. Unless and until testing was done, there would always be uncertainty which would affect the children's carers and in due course the children themselves.

On the other hand, there were a number of cogent arguments against carrying out testing.

First, it was the general practice not to provide genetic testing to children to determine whether they had a condition whose onset occurred in mid-adult life where there was no treatment which could be provided in childhood. It was generally recognised that it was contrary to the interests of the patient for testing to be carried out under the age of 18.

Secondly, it was undesirable to treat children differently simply because they were being considered for adoption. Save in exceptional circumstances, all other children would be given the opportunity to decide for themselves when they were older whether or not they should have the test. To order testing of the children in the instant case at the present stage would deny them the right to make their own decision when they were older.

Thirdly, though difficult, finding an adoptive placement if there was an unresolved possibility that the boys might carry the HD gene, would not be impossible.

Finally, when children had been removed permanently from their birth family, it was important, if possible, that they be placed permanently together. There was a significantly greater risk that one boy will be found to carry the gene and the other not. In those circumstances, there was, on the basis of the local authority's plans, a significant prospect that the children would ultimately be separated. That should be avoided if possible.

Baker J therefore concluded that it was not in the welfare interests of the boys for the court to order testing.

Comment 

I have to say I think the decision was correct. There was a real risk that the siblings might be separated if one was found to carry the HD gene and the other not. 

Moreover, as Baker J said, screening would not normally be allowed for children living with their birth parents.  For reasons of individual autonomy, it would be held that the children should be entitled to decide from themselves once they became adult (or at least Gillick-competent) whether they wished to be screened.  That right should not be denied children just because they happen to be on the list for adoption.  This, to my mind, is the strongest argument, though Rosalind English on the UK Human Rights Blog disagrees. She argues:

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? (…)

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.

Nevertheless, I still think it would have been wrong in the present case to undertake the screening. Imagine if, in future, a complete disease/condition screen could be done of all children.  Would that not render children waiting for adoption to be formed effectively into a queue, with the least fortune genetic inheritors inevitably forced to the back?  It seems to undermine the whole ethos of being a parent if one’s attitude towards one’s children (adopted or natural) is conditional upon that child’s genetic good fortune, though an interesting question would arise if the authority knew that the children carried the HD gene (or anything similar) and sought to withhold it from prospective adopters. 

But let no-one assume that this is the last word on the case - still less the last time extremely difficult ethical questions will arise more generally as a result of advancing genetic science.