Y and Z (Children), Re

Under section 38(6) of the Children Act 1989, the court may direct medical or genetic testing of children subject to interim care orders. The decision must be determined by each child’s welfare, having regard to the welfare checklist and Article 8 rights.

Testing for an untreatable condition that ordinarily develops in adulthood will generally require compelling, case-specific justification. The court must balance the possible benefits, including improved adoption planning, against psychological harm, loss of future autonomy, and risks to sibling relationships. Children being considered for adoption should not ordinarily be treated differently from children living with their birth families. The fact that testing may make adoption easier is insufficient where testing is not impossible and the countervailing welfare risks are substantial.

Two young brothers were subject to interim care orders in care proceedings. Their father reported a family history of Huntington’s disease, but the evidence did not establish conclusively that he or other relatives carried the gene. The local authority sought genetic testing because uncertainty might make adoption more difficult. The parents and children’s guardian opposed testing, relying on expert evidence that predictive testing for an adult-onset condition without childhood treatment should generally be deferred until adulthood.

The issue was whether the welfare of each child required genetic testing under section 38(6) of the Children Act 1989.

1. Jurisdiction and governing principles. Section 38(6) of the Children Act 1989 gave the court power to direct medical or psychiatric examination or other assessment of children subject to interim care orders. The issue fell to be determined by the welfare of each child. The welfare checklist in section 1(3), including personal characteristics, applied, and Article 8 rights were engaged.
2. Welfare assessment. The court accepted that not testing would make it significantly harder, but not impossible, to find an adoptive placement. The potential benefit of matching the children with fully informed adopters therefore carried weight. It was not, however, decisive.
3. The established professional practice was not to undertake predictive testing of children for an adult-onset condition that had no useful childhood treatment. Testing would expose the children to a substantial risk of psychological harm without medical gain. There was no recognised counselling protocol for young children facing the consequences of a positive result.
4. Children being considered for adoption should, wherever possible, have the same protection as children living with their birth families. Testing solely to make a child more adoptable was not justified. Personal autonomy formed part of the child’s welfare under section 1(3)(d) and was protected by Article 8. The court relied on NHS Trust A v M [2001] Fam 348 and Jehovah’s Witnesses of Moscow v Russia [2011] 53 EHRR 4 in recognising the importance of self-determination in medical decisions.
5. There was also a significant risk that testing would show different results for the two brothers, leading to their separation. That would cause emotional harm and could cause additional psychological harm to the child left in foster care. Balancing all the factors, testing was not in either child’s welfare interests. The court directed that the decision should inform future planning and care plans, and returned the care proceedings to the county court.

The care proceedings were transferred from the Family Proceedings Court to the county court because of their complexity. The specific issue of genetic testing was then listed before the High Court. This was a first-instance determination, after which the care proceedings were returned to the county court.