By Michael Fay and Edward Dove

ABC v St George’s Healthcare (2017) is an important legal decision, and its return to court in November 2019 will be no less significant for doctors’ duties of care. Currently, a doctor is subject to a duty of care to their patient. A doctor also has a corresponding duty of confidentiality. Medical law, to paraphrase the court in ABC, incentivises duties in one direction: towards patients. Historically, this has not been problematic because a doctor’s relationship is only with her patient. But in the era of genomic medicine and genetic screening, doctors – particularly those working in clinical genomics – are coming into possession of information that is relevant to both the patient and the patient’s relatives. In ABC, this information was a diagnosis of Huntington’s disease (HD); the patient received this information but refused to let it be disclosed to his pregnant daughter because he was concerned she ‘might get upset, kill themselves or have an abortion.’ When she later learned about her father’s condition, and was subsequently diagnosed with HD herself, she sued St George’s University Hospitals NHS Foundation Trust, arguing that the failure of the doctors to tell her about her father’s diagnosis was actionable negligence.

This argument led to the obvious tension of doctors’ obligation of confidentiality to their patients and a potential duty of care to patients’ relatives. In the High Court, Mr Justice Nicol came down very strongly on the side of the Trust, accepting their nine arguments, five of which (explicitly or implicitly) involved confidentiality. The Trust said the claimant’s case did not engage a public interest in breaching confidentiality; the law of confidence already allowed disclosure in certain situations; conflicting duties of patient confidentiality and disclosure to patients’ relatives would be created; trust and confidence in doctors would be undermined; and pressure would be put on patients to consent to disclosures. The upshot here is that the legal status quo leaned heavily towards the duty of confidentiality.

This was a theme picked up by the Court of Appeal when they heard ABC in 2017. The court recognised that the law incentivises duties in only one way – towards the patient. Thus, when a patient does not consent to the disclosure of genetic information to others, the law would encourage doctors to respect confidentiality rather than make a disclosure because no legal consequences attached to this course of action. In other words, doctors would not get sued if they took this position. This is despite the law and professional guidance stating that while confidentiality is undoubtedly important, ‘it is not absolute’ (GMC, 2017). In fact, GMC guidance explains that genetic information may be disclosed if it is in the public interest, and doctors will need to balance their duty to care for the patient against their duty to help protect other persons from serious harm (GMC, 2017, para 75). There is obviously huge significance and benefit to keeping patient’s medical information private, but there are also benefits to disclosing genetic information in some instances, such as preventive treatments or interventions, increased surveillance or other investigations, and preparing for potential health problems (GMC, 2017, Royal College of Physicians, 2011).

The time has therefore arrived for the law to stop incentivising confidentiality over and above balancing the interests of patients and patients’ relatives and making disclosures where necessary. As the Joint Committee on Medical Genetics explained in 2011, ‘providing the tested person with a right of veto over such risk information in all situations may be legally and ethically unsound’. Legal rules must keep pace with the direction of professional guidance and changes to the law to empower doctors to make clinically and ethically appropriate disclosures without patient consent is necessary. It is confusing and unhelpful to have professional guidance that states confidentiality may be breached in certain circumstances but provide no clear legal basis for doing so. A finding of a duty of care when ABC returns to court would provide such a basis. The point here is not to create a duty mandating disclosure, but rather to create a duty to conduct a balancing exercise, as is set out in the GMC’s guidance, or as we call it in our article, a duty to consider the interests of genetic relatives. The scope and direction of professional guidance has been influential in recent developments in medical negligence (for example, in consent to risks of treatment: Montgomery v Lanarkshire [2015] UKSC 11), and it is appropriate that it again guides legal development concerning the disclosure of genetic information.

Paper title: Familial genetic risks: how can we better navigate patient confidentiality and appropriate risk disclosure to relatives? [Open access]

Competing interests: We have no competing interests to declare.

Social media accounts of post authors:

Michael Fay: @MFay_Law

Edward Dove: @EdwardSDove