22 May 2017
ByAppeared in BioNews 901
The UK Court of Appeal last week overturned a 2015 decision by the High Court which had ruled the case had little prospect of success and therefore should not proceed. The latest judgment means the case is arguable - balancing the right to doctor-patient confidentiality with the obligation to prevent harm to others - and can go to trial.
Huntington’s disease (HD) is caused by a mutation in a single gene, and the child of an affected person has a 50 percent chance of inheriting the incurable illness. Symptoms usually start between the ages of 35-55 with significant loss of function, and the condition is ultimately fatal.
The father in this case has been held in a secure hospital since 2007 following his conviction for manslaughter after killing his wife. In early 2009, his doctors suspected that he had Huntington's disease and the diagnosis was confirmed later that year. The father was adamant that his three daughters should not be told because they ‘might get upset, kill themselves, or have an abortion’.
One of man's daughters subsequently became pregnant and gave birth to a baby girl in 2010. A few months later, one of the father's doctors accidentally revealed the HD diagnosis to her. She has subsequently been tested and carries the HD gene; her child is too young to be tested.
The woman – whose identity has not been revealed – claims that she would have been tested sooner had she known, and terminated her pregnancy in the light of a positive result. She knew when pregnant that she would be a single mother, and would not have wanted to have a child who will be orphaned or dependent on a severely ill adult.
When the case was originally brought to the High Court, it was 'struck out' before receiving a full hearing, with judge Mr Justice Nichol concluding that the doctors did not owe a duty of care to the woman because she was not their patient. He was also concerned that if clinicians have a duty to disclose such information it would undermine doctor-patient confidentiality and public trust in the medical profession.
In the appeal, the UK General Medical Council's 2009 guidance on doctor-patient confidentiality was central to the decision. It states that a doctor should disclose information 'if a patient's refusal to consent to disclosure leaves others exposed to a risk so serious that it outweighs the patient's and the public interest in maintaining confidentiality'.
Lord Justice Irwin ruled that this could mean that a duty of care existed: 'If the clinician conducts the requisite balancing exercise, and concludes that it falls in favour of disclosure then a professional obligation arises.'
The case will now return to the High Court for a full trial.