This was an unusual and tragic case. In 2007 ABC’s father shot and killed her mother. He was convicted of manslaughter on the ground of diminished responsibility and sentenced to a hospital order.
Medical staff suspected that the father might be suffering from Huntington’s Disease, a serious and progressive neurological condition which is ultimately fatal. Children of a parent with this disease have a 50% chance of developing it themselves. Diagnosis was confirmed during the course of 2009. Those concerned with the father’s care considered whether they should override his confidentiality and inform his daughters of the diagnosis. However, the father insisted that his daughters should not be informed. He was asked about this on several occasions but maintained his firm position, especially when ABC became pregnant because he thought she might have an abortion were she to be told.
In April 2010 ABC gave birth to a daughter. A few months afterwards, she was accidentally informed by a clinician about her father’s diagnosis. In January 2013 she was herself diagnosed as suffering from Huntington’s Disease, but it is not yet known if her child is similarly affected.
She brought a claim against various NHS trusts involved in her father’s treatment on the basis that, had she been informed about the diagnosis, she would herself have sought testing and, if the disease was confirmed in her, she would have had a termination. This was therefore in part a “wrongful birth” claim.
We sought to have the claim struck out as having no sustainable basis in law, and this was agreed by Mr Justice Nicol in May 2015. The claimant then appealed to the Court of Appeal. Lord Justice Irwin gave the leading judgment. He said that the claim relied on guidance issued by the Royal College of Physicians and other professional bodies in April 2006 entitled Consent and Confidentiality in Genetic Practice, Guidance on Genetic Testing and Sharing Genetic Information. This included the following statement: “In special circumstances it may be justified to break confidence where the aversion of harm by the disclosure substantially outweighs the patient’s claim to confidentiality”. Before disclosure should be made in such circumstances, “the benefit to those at risk should be so considerable as to outweigh any distress which disclosure would cause the patient”. GMC guidance published in 2009 was along similar lines: “Disclosure of personal information about a patient without consent may be justified in the public interest if failure to disclose may expose others to a risk of death or serious harm”.
Lord Justice Irwin then observed that in the field of genetics, risk can increasingly be quantified. Although the trusts had argued that allowing this claim to continue would be an unwarranted extension of the common law, that was not the case because the law regarding duty of care had been developed by judicial decision.
Consequently, the Court of Appeal took the view that the claim was “arguable”, and therefore reinstated it.
It is important to stress that ABC has not yet succeeded in her claim. Rather, the Court of Appeal has merely allowed it to continue. Nevertheless this case raises in very stark form the potential conflict between a patient who on several occasions specifically refused permission for confidential information about his condition to be disclosed to his daughters, and the interest of the daughters in knowing that they may have inherited a devastating condition. The ruling highlights the fact that patient confidentiality is not absolute, although there must be very strong reasons indeed to overrule it. Whether failure by the clinicians to take this step in the present case should give rise to a finding of legal liability on the part of the NHS is very much a moot point, and it is likely that this issue will proceed to a separate hearing.
Author: John Mead, Director of Technical Claims, 24 July 2017