The High Court has ruled against testing two young children for Huntington’s Disease in order to improve their chances of adoption.
Re Y and Z (Minors) concerned two children, now aged three and two, who had been placed in care after the police raised concerns about their family. The father admitted being violent to the mother and was also a user of illegal drugs.
He also told the local authority that both his mother and brother suffered from Huntington’s Disease, a genetic disorder than can lead to mental decline and muscular problems, usually in later life. The man, then aged 44 and much older than the mother, suspected he might have the condition too.
The two boys were placed for adoption by their local authority. The question of whether they should undergo genetic testing for the disease was referred by the local Family Proceedings Court to the county court and from there to the Family Division of the High Court.
Mr Justice Baker carefully considered evidence presented by a senior social worker at the local authority. She told the court she expected the boys to be adopted relatively quickly if they were found not to have Huntington’s Disease, but the situation would become more difficult if they were found to carry the gene. However, if no test was carried out this could also lessen their chances of being adopted, she claimed.
In a detailed ruling the judge decided against testing. He explained:
“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 [Huntington’s Disease]. The risk, identified in the consensus of opinion amongst professionals working in this field…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 “