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Judge rules against testing for disease in care case

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 “

The blog team at Stowe is a group of writers based across our family law offices who share their advice on the wellbeing and emotional aspects of divorce or separation from personal experience. As well as pieces from our family law solicitors, guest contributors also regularly contribute to share their knowledge.

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  1. Gary Key says:

    I agree with the judges decision, it ultimately lies with the individual when old enough to make their own decision on testing as the outcome can be traumatic and life-changing.I would like to add that when my wife was tested positive aged 22, we tried to adopt and found out it was almost impossible to adopt because she’d had the test. The certainty of developing HD went against the adoption system so it would have been better not to have been tested at all. So in the end trying to do the right thing had back-fired we had 2 children of our own and thankfully both have been tested negative for HD.

  2. John says:

    I disagree with the judge if the ruling also hides the fact they are at risk for HD. An Adoptive parent should know of the possibility they will have the disease. The problem of secrecy has been a nightmare for my family. Since there is so much concern to keep it a secret we have had birth after birth of at risk children. The parents never informed of the possibility. Testing could be done and results sealed until the child reaches the age testing age. If we had know of the possibility of HD it would have defiantly influenced our decision to have children. We had two before we knew that my wife’s father had the disease. I’m doing my best to ensure my children know and are exposed to my wife’s advanced stage of this disease so they can understand and make an informed choice. It’s like having AIDs and not telling. HD needs to come out of the closet.

  3. Jack says:

    Fascinating case! I’m not sure the boys would have ‘won’ either way the case could have been decided.

    @ Gary – congratulations on your healthy children!

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