In 2007 XX, who was ABC’s father, killed her mother. He was found guilty of manslaughter by reason of diminished responsibility and made subject to a hospital order under the Mental Health Act. He was placed at a facility run by the second defendant, where clinicians reached a view that he might be suffering from Huntington’s disease, a neurodegenerative disorder of genetic origin.
ABC became pregnant in July 2009, shortly after the provisional diagnosis of XX was made. Clinicians asked XX if they could inform both his daughters, as they had a 50% chance of inheriting the condition if it was confirmed. XX refused, believing that such knowledge could impact on their decision whether or not to have children. Consequently, ABC and her sister were not told. Testing in November 2009 confirmed that XX had the condition and he was informed on 10 December that year, by which time ABC was over 24 weeks pregnant. ABC’s child was born in April 2010. ABC tested positive for the condition in 2013, so her child has a 50% chance of inheriting it.
In August 2010, a doctor inadvertently revealed to ABC that her father had Huntington’s. This caused her great distress and she brought a claim for “wrongful birth”, alleging that doctors should have over-ridden her father’s confidentiality and informed her. Had they done so, she claimed that she would have had a termination. The claim was both in negligence and under the Human Rights Act. It was asserted that the second defendant owed a duty of care to ABC as a patient because she was attending family therapy sessions with them at the relevant time.
The duty of confidentiality is not absolute, and guidance on it is published periodically by the GMC – the relevant editions in this case being 2004 and 2009. The former states that personal information may be published without a patient’s consent, and in exceptional cases where the patient has with-held consent, “where the benefit to an individual or to society of the disclosure outweigh the public and the patient’s interest in keeping the information confidential”.
Mrs Justice Yip held that since ABC had attended therapy sessions at the second defendant’s premises she was owed by them a duty of care as a patient. However, that duty did not extend to releasing to her confidential information about another patient, because that did not arise out of the therapy she was being given.
When considering whether or not to release information to ABC, XX’s consultant psychiatrist had consulted a geneticist and other clinicians and had concluded, on balance, that disclosure should not take place. In the case of XX’s other daughter, there was a more formal process in that an ethics committee meeting had been convened on 7 October 2010 (ABC was aware of her father’s condition two months earlier, but did not inform her sister), and a formal vote was taken, with the majority favouring non-disclosure. The judge was satisfied that an appropriate balancing exercise had been undertaken on both occasions, and that the decisions not to disclose were supported by a responsible body of professional opinion (including experts instructed on behalf of the defendants), even though other responsible clinicians would have disclosed. The claimant had not demonstrated that the decision was illogical.
The judge observed that courts have agreed on occasion that clinicians may owe a duty of care to people other than their patient, but “such a duty is only capable of arising where there is a close proximal relationship between the claimant and the defendant”. There was no such relationship between the geneticists and ABC. However in the case of the SW London Trust it was fair and reasonable for that organisation to balance the risks of disclosure. That balancing had been undertaken appropriately and so the trust was not liable.
Additionally, the judge was not satisfied that had ABC been informed about the provisional diagnosis in early October 2009, she would have proceeded to termination because (a) the timescale was very tight and (b) she would probably not have had genetic testing then.
Overall therefore, although SW London Trust owed ABC a duty of care because of the close proximal relationship involved, that duty was to conduct a balancing exercise and the exercise had been undertaken appropriately. There was no such duty on the part of the other defendants. There was no broad duty of care towards all relatives in respect of genetic information. The claim therefore failed.
This was a very sad and probably unique case, which gave rise to an important judicial examination of the tension between a patient’s confidentiality and a relative’s interest in knowing that she might have an inherited disease. The ruling is helpful for the NHS in that it maintains established confidentiality principles, although that is not to undermine its likely effect on ABC. Had it gone the other way, guidance on confidentiality would have needed to be re-written. The judgment therefore does not alter the law, but rather applies existing principles to very unusual circumstances. Importantly it states that geneticists do not owe a different duty to that of other clinicians, a possibility raised by the Court of Appeal when allowing the claim to proceed to a full hearing.