12 December 2016


'Negligence, genetics and families: A duty to disclose actionable risks' by Michael Fay, in (2016) 16(3-4) Medical Law International 115-142 comments
Genetic testing can reveal information significant to patients’ relatives. This familial aspect raises an important question: should clinicians owe a duty to disclose genetic risk to patients’ blood relations? In ABC v St George’s Healthcare NHS Trust and Smith and Another v University of Leicester NHS Trust, the High Court rejected claims by relatives regarding genetic information. Both cases are being appealed. The High Court’s analysis of duty was restrictive; foreseeable harm and proximity thus far receiving minimal scrutiny. A detailed analysis indicates harm and proximity are important in defining the scope of a duty. The foreseeable harm is argued as medically actionable genetic conditions. Proximity could be demonstrated by claimants establishing themselves as identifiable victims of non-disclosure that ought to be in defendants’ contemplation as so affected. It is also argued a duty is not prohibited by the policy reasons relied upon in ABC: incremental development, confidentiality, a right not to know and psychiatric harm.
Fay concludes
Genetic information is a conundrum because of its familial dimension. ABC and Smith have seen this issue adjudicated from two perspectives in court, and both claims were rejected, but neither case provides a complete analysis of the Caparo test, thus harm did not receive attention in both cases, and proximity was also eschewed in ABC. The Court of Appeal will be presented an opportunity to more completely consider duty when it hears both cases on appeal in 2017 and it is argued the matter should be sent to trial. Full consideration of a duty to relatives is essential against a backdrop of increasing accessibility of genetic information.
The High Court resisted both claims, concluding such a duty was a giant step inconsistent with incremental development of negligence, but caselaw is indicative a duty to disclose is actually an incremental development. Cases on non-disclosure of risk may form a springboard for a duty and would constitute more appropriate analogies than the doctor–patient caselaw cited in ABC. Reliance on Selwood in Smith was also deserving of greater analysis; instead the court distinguished the cases on their factual matrix. If the proposed duty is accepted as an incremental development, claimants must then overcome the Caparo test. It is argued foreseeable harm and proximity are critical considerations when defining the scope of the duty and lack of discussion in ABC is a missed opportunity. The foreseeable harm is proposed as undisclosed, medically actionable conditions that eventuate. This constitutes an interference with physical integrity which is an interest protected by tort and US and UK caselaw on undisclosed risks indicate directly causing harm is not a prerequisite of liability. Proximity will pose a problem because there is no pre-existing relationship between clinicians and relatives. However, relying on caselaw concerning risks of infection, contagion and physical harm, claimants may be able to demonstrate they were identifiable victims of non-disclosure and should have been in the defendants’ contemplation as so affected. If identifiable victims are defined as immediate relatives, the scope of the duty and number of potential claimants will be limited, providing a rejoinder to concerns regarding an overly burdensome obligation.
Furthermore, the policy issues relied on in ABC do not prevent a duty being fair, just and reasonable. Confidentiality is not absolute; the public interest in maintaining confidences can be countervailed by another public interest, and prevention of harm and protecting Article 2 rights both have application to genetic information. Erosion of doctor–patient trust is a valid concern but research is indicative of greater than 90% of people being willing to forgo confidentiality in cases of actionable conditions. A right not to know is also reconcilable with a duty if individuals have previously indicated they do not want to receive information about their genetic risks. Furthermore, research indicates a preference for disclosure in cases of medically actionable conditions, meaning reliance on a right not to know in ABC was questionable. Psychiatric harm caused by disclosure also does not prohibit a duty providing the condition is medically actionable, because treatment means disclosure can avert harm. Therapeutic interventions counterbalance potential risks of psychiatric harm; where no treatment is available, whether disclosure is beneficial is a moot point. Disclosure made to engender preparedness is suspect because it is unclear harm would be avoided.
While ABC and Smith both rejected a duty to disclose, an opportunity to send the matter to trial will come before the Court of Appeal in 2017. Smith represents a step too far in terms of duties to third parties, but it is at least arguable a duty should be owed in ABC, though the intractable nature of Huntington’s disease is problematic. Since Huntington’s is not treatable, foreseeable harm will be difficult to prove. Furthermore, the benefits of disclosure in the absence of therapeutic responses are debatable. In the event a duty is accepted, breach and causation remain moot points.