'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.
