A long-awaited decision in the case of ABC v St George's and others was made public last week (see BioNews 1037). This case was about whether the doctors looking after a man (known as XX) – who had a clinical diagnosis of Huntington's disease – should have alerted his daughter (ABC) to the fact she might have inherited the condition from him, despite XX's insistence that his confidentiality regarding this should not be broken (see BioNews 901 and 978). XX was under the care of forensic psychiatrists because he had shot his wife – ABC's mother – and had been detained in a secure institution as a result.
In the witness box last November, ABC testified how she was told about her father's diagnosis when his forensic psychiatrist visited her at home and revealed the information accidentally. This was about a year after the forensic psychiatry team had discussed the question of ABC's interests because she had revealed she was in the early stages of an unplanned pregnancy. The team had questioned whether she had a right to know about her own risks.
ABC told the court that had she known she herself had inherited the condition, she would have terminated her pregnancy as she would be unlikely to be able to parent the resultant child until adulthood (because she would likely become symptomatic in the next decade). She therefore claimed her father's doctors had been negligent in not weighing her interests in the balance appropriately.
Mrs Justice Yip said in her ruling that although she had sympathy for ABC's circumstances, she was not convinced that ABC would have had a termination were she to have known she herself had inherited Huntington's disease.
At the same time, her judgment made it clear that the law requires clinicians to perform a detailed balancing exercise between the interests of a patient (in keeping their information confidential) and those of any at-risk third parties with whom they have a 'proximal' relationship. It is clear that ABC was in such a relationship with her father's doctors as she attended regular meetings about his care, and told them about her pregnancy. She also attended family therapy run by the forensic psychiatry team to try and repair her relationship with him.
The dilemma of whether, and how, to communicate familial genetic risk beyond the confines of a single patient-doctor relationship has been a challenging ethical and legal issue for many years. Professional guidance recognises the tensions between the interests of patients and their relatives and states that it may be justified for a health care professional to breach confidence where the prevention of harm by the disclosure outweighs the claim to confidentiality.
As Sir Jonathan Montgomery, Professor of Healthcare Law at University College London, says in his introduction to guidelines relating to genomic practice: 'The (then) Human Genetics Commission recommended in 2002, [that] health professionals should recognise the value of familial solidarity and altruism, and encourage or facilitate the appropriate …. communication of relevant information with relatives.'
Guidelines like this suggest that professionals can disclose genetic risk information without fear of professional sanction. However, until now the law obstructed this discretion by recognising only a legal duty to protect patient confidence and not a duty to consider and act in line with the interests of third parties, where professionals conclude that these interests deserve priority. This meant that the discretion afforded in the professional guidance became ineffective because of the lack of legal protection where that discretion was exercised in favour of disclosure.
Justice Yip's ruling introduces a novel legal duty to weigh in the balance a third party's interest in information which might reveal a serious risk to them. This concept of coexisting duties, framed as a novel duty to consider the interests of third parties, now allows doctors to exercise and act on their professional judgments without fear of liability for breach of confidence.
Such situations are not novel for genetic services, who usually try to work with families so that relatives identified to be at risk are notified. The ABC case was unusual in that XX refused contact with genetic services and there was quite a narrow window for disclosure if it were to be in time to consider a termination of pregnancy.
The case focused on whether XX's confidentiality could and should be breached, but genetic services will often be able to alert at-risk relatives without a breach of confidentiality. This is because, where the information to be disclosed is familial it is therefore not uniquely identifying of one individual. Telling a relative they are at risk of an inherited condition, is not the same as disclosing clinical details of the person in whom that heritable factor was first identified. It is often possible to say to a 'proximal' relative: 'we have reason to believe you are at risk of an inherited condition, here is a means to find out more'.
We have successfully delivered such familial information to at-risk relatives, often with help of general practitioners, whilst preserving the clinical confidentiality of the index case. We also consider that even if a person subsequently infers from whom they have inherited a condition, this is not the same as a breach of confidentiality, in part because that inference may be wrong; because we know that we each inherit 50 percent of our genes from each parent, and because such conditions will likely come to light at some point anyway.