Care Children Not Tested for Huntingtons

The proceedings concerned two children aged three and one, who were the subject of interim care orders. It was likely that they would be placed for adoption. The children came from a family in which Huntington's disease (HD) was said to be possibly present. HD is a hereditary disorder of the central nervous system caused by a defective gene. 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 had the disease was born with a 50% chance of inheriting the gene, and anyone who inherited the gene would, at some stage, develop the disease. The symptoms usually emerged between the ages of 30 and 50.

The court has the power to determine whether children who were subject to interim care orders should be subject to medical or psychiatric examination or other assessment. In this case the issue arose as whether the children should be tested for HD in the course of the care proceedings.

The principal issue was whether the welfare of each child required him to be subjected to genetic testing to establish if he had the gene for HD. The local authority supported the testing of the children. The court heard evidence from a social worker who advised that if either of the boys had the gene for HD it would make the task of identifying an adoptive family much more difficult. There was no conclusive evidence, in the form of medical reports or records, demonstrating that any member of the family had HD. The authority recognised the possibility that, if one child was found to have the gene and not the other, the child without the gene could be placed for adoption whilst the child with the gene remained in foster care.

The court ruled that on the facts of the case 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 risk of emotional and psychological harm to the boys if one or both of them had 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 reached adulthood whether or not to undergo the test, outweighed the risk of harm arising from the likelihood that it would be harder (although not impossible) to find an adoptive placement if genetic testing was not carried out.



Elizabeth Bettes

Published on 12/07/2013

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