The correct approach to take as regards screening for a rare genetic disorder when children are being considered for adoption was tested in the family court recently. The case involved two small boys who were taken into care after their father, who suffers from Huntington’s disease, had admitted being violent towards their mother.

The children were to be considered for placement for adoption and the High Court had to decide whether it should order that they be screened for the disease, which is a hereditary condition that can affect both men and women. It is a degenerative disorder of the nervous system, which normally appears in the middle years of life.

The children’s guardian acknowledged that it would be significantly more difficult to secure an adoptive placement for the boys if they were shown to possess the defective gene, but contended that in such cases it was proper to place children with adopters who were informed about their condition. In addition, it was argued that the children themselves had the right to be brought up knowing their background and any uncertainty would be removed by testing.

The main counter-arguments were that since any onset of the disease was many years away and no treatment could be provided in childhood, testing could do the children more harm than good, and that it was not normal practice to carry out such screening at a young age. It was not sensible, it was argued, to treat children differently just because they were being placed for adoption.

The Court ruled that were the test results to reveal that either child had the defective gene, this could cause emotional harm and might increase the risk that the boys would be separated for adoption, which would not be in their best interests. They could decide for themselves in adulthood whether or not they wished to have the test.

The Court ruled that it was not in the children’s best interests for the tests to be carried out.


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