Case Note: Duty to Warn of Genetic Risks?

ABC v St George’s Healthcare NHS Trust and Ors [2017] EWCA Civ 336

Introduction

To what extent does a health service provider owe a duty of care to (third party) relatives of a patient who may be predisposed to a genetic condition?

This is the question raised by ABC against the St George’s Healthcare NHS Trust, the South West London and St George’s Mental Health NHS Trust and the Sussex Partnership NHS Foundation Trust (Defendants). The Defendants learned that ABC’s father suffered from Huntington’s disease but, consistent with his wishes, did not disclose the diagnosis to ABC. When ABC was subsequently diagnosed with the same condition she sued the Defendants in negligence. The trial judge ordered ABC’s statement of claim be struck out on the basis that the Defendants did not owe a duty of care to ABC. However, the Civil Division of the English Court of Appeal quashed that order and remitted the case for trial.

In doing so, the Court has left open the possibility that a duty of care may be owed to third parties with an interest in a patient’s genetic information, however whether such a duty exists still needs to be determined at trial.

Facts

In 2007, ABC’s father had been found guilty of manslaughter by diminished responsibility and was placed in the care of the South West London and St George’s Mental Health NHS Trust pursuant to a hospital order under the Mental Health Act 1983 (UK). Medical investigations into the reasons for ABC’s father’s diminished responsibility were conducted at a hospital administered by the St George’s Healthcare NHS Trust.

During the course of these investigations, the Defendants formed the view that ABC’s father may be suffering from Huntington’s disease: a hereditary, incurable and fatal disease that is associated with disruptions of movement, cognition and behaviour. A person with Huntington’s disease has a 50% chance of passing the condition on to their children.

Genetic testing confirmed the diagnosis of Huntington’s disease. S ubsequently, the father’s medical team considered whether ABC should be informed because the possible implications meant that she may have had ‘a right to know’. The father, who was involved in these discussions, said he did not want ABC to know in order to protect her from distress. On the same day as these discussions, ABC informed her father that she was pregnant. Her father maintained that ABC should not be informed and ABC gave birth in early 2010.

As it transpired, ABC was accidentally informed of her father’s diagnosis by one of her father’s doctors a few months after giving birth. ABC underwent genetic testing, which showed that she suffered from Huntington’s disease. When the case was filed, it was too early to conduct tests to determine if ABC’s daughter also had the condition.

Procedural history

ABC sued the Defendants in negligence. She argued that the defendants owed her a duty of care that required them to act reasonably when considering whether they should have disclosed her father’s diagnosis of Huntington’s disease. As a consequence, she continued, she had suffered psychological harm and lost the opportunity to consider terminating her pregnancy (either because of the risks that the child would have the disease, or because she did not want to have a child in the knowledge that she, ABC, would become seriously disabled in later life).

The Defendants argued that they did not owe ABC a duty of care and that a duty of care should not be imposed. As such, they applied for ABC’s claim to be struck out. The trial judge, Nicol J, granted the application.

ABC then appealed to the English Court of Appeal, Civil Division.

Issues

The issue on appeal was whether Nicol J had been right to strike out ABC’s claim. The question was not whether the duty of care contended for by ABC existed, but only whether or not it was arguable that such a duty could exist. Thus, the appeal only concerned whether a court would consider the existence of the proposed duty of care.

Because the duty of care contended for by ABC was novel, she had to show it was arguable that the kind of relationship between her and the Defendants satisfied the three elements set out in Caparo Industries Plc v Dickman [1990] 2 AC 605:

  1. the relationship was one in which harm was foreseeable;
  2. the relationship can be characterised as one of proximity; and
  3. it is fair, just and reasonable to impose a duty on one party for the benefit of the other.

For the purposes of the argument, the Defendants accepted that the first two elements existed. The case turned upon whether imposition of a duty of care between ABC and the Defendants was fair, just and reasonable.

ABC’s argument

ABC argued that it was fair, just and reasonable to impose a duty of care on the Defendants for her benefit because she had a ‘special relationship’ with the Defendants. This relationship arose, said ABC, either because the Defendants knew important information about ABC (i.e. the risk of a genetic condition) that had a direct effect on her ‘health, welfare and life’, or because the Defendants provided her with family therapy associated with her mother’s death and had a responsibility for therapeutically addressing the relationship between ABC and her father.

Cognisant that the Defend ants would argue that the alleged duty of care would conflict with their obligations of confidence to her father (and would thus be unfair, unjust or unreasonable to impose), ABC relied upon professional guidance to argue that the duty of confidentiality was not absolute.

In particular, she pointed to the Royal College of Physicians’, the Royal College of Pathologists’ and the British Society of Human Genetics’ Consent and Confidentiality in Genetic Practice, Guidance on Genetic Testing and Sharing Genetic Information, which stated:

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. Examples may include a person declining to inform relatives of a genetic risk of which they may be unaware, or to allow the release of information to allow specific genetic testing to be undertaken. (emphasis added)

Similarly, General Medical Council’s Good Medical Practice guidance stated that:

If a patient’s refusal to consent to disclosure leaves others exposed to a risk so serious that it outweighs the patient’s and the public interest in maintaining confidentiality, or if it is not practicable or safe to seek the patient’s consent, you should disclose information promptly to an appropriate person or authority. You should inform the patient before disclosing the information, if practicable and safe, even if you intend to disclose without their consent.

In light of this guidance, ABC argued that there are professional (as opposed to legal) obligations that would require disclosure to those who, while not in a doctor-patient relationship with the relevant medical practitioner, have an interest in that information (such as the diagnosis of Huntington’s disease). As such, this argument continued, it would not be unfair or unreasonable to impose a duty of care to the same effect.

The Defendants’ argument

In response the Defendants argued that various policy reasons pointed against the imposition of a duty of care. In particular, they alleged that imposition of the duty of care contended for by ABC would conflict with the duties already owed by doctors to their patients (such as the duty of confidentiality). Further, they continued, the prospect of disclosure (even if only theoretical) would undermine confidence in the doctor-patient relationship because patients could not be certain their information would remain confidential. The Defendants concluded that these features would render the duty unworkable, either because doctors would not know if they should disclose information that may be unwanted by a third party or because the duties to the patient and interested third party would be difficult to resolve. As a consequence it would be unfair, unjust or unreasonable to impose the duty.

Decision

Lord Justice Irwin (with whom Lady Justice Gloster and Lord Justice Underhill agreed) held that it was at least arguable that the duty of care contended for by ABC existed. As such, the Court quashed the order striking out ABC’s claim and remitted the case for trial.

Given the nature of the question on appeal (whether it was arguable that a duty of care existed) Irwin LJ did not conclude on the merits of each argument. Instead, his Honour only considered whether, with reference to the countervailing reasons raised by the Defendants, the existence of duty was arguable.

Public interest in disclosure?

His Honour started by observing that there was, as recognised in the professional guidance adduced by ABC, arguably a public interest in disclosures of some kinds of patient information to third parties. The imposition of a duty to that end would likely improve public confidence in the medical profession by holding them to the guidance and could be consistent with the trend towards individual autonomy in the field of medical negligence.

The latter argument requires some expansion. Lord Justice Irwin noted that the legal trend in negligence has been towards facilitating patient autonomy by empowering those patients to make decisions about their treatment. However, Irwin LJ continued, it is potentially inconsistent to emphasise the autonomy of an individual patient above the autonomy of specific third parties known to the doctor who would become patients if the doctor disclosed information in which those third parties had an interest. Lord Justice Irwin accepted that it could be argued that the interest of third parties could give rise to a public interest in disclosure. In particular, Irwin LJ said:

[ABC] argues that there is a public interest in preventing the unwitting conception or birth of a child who may need significant state support because of the parent’s potential inability to bring up her child, and where that child itself has such a high chance of growing up only to succumb herself to such a fell disease. … I cannot conclude that the Claimant’s position is unarguable.

Conflict of duties?

Turning to the issue of a conflict of duties between the interests of patients and third parties, Irwin LJ accepted that the imposition of the duty contended for by ABC would lead to some difficulties for medical practitioners. His Honour observed that the difficulty already existed (as evidenced by the need for clinical guidance on the matter) and approved of ABC’s argument that a legal duty could encourage the protection of the interests of patients and third parties by ensuring that practitioners carry out an appropriate balancing exercise when considering whether to disclose patient information to a third party without a patient’s consent.

While accepting that the prospect (even a theoretical one) of involuntary disclosure of patient information by a doctor could undermine trust within the doctor-patient relationship, Irwin LJ went on to observe that this was not necessarily a reason to avoid imposing a duty of care because the imposition of a duty of care would not automatically entail legal liability, nor would it always require disclosure of information. Rather, such a duty would only require a medical practitioner to act reasonably, as informed by peer opinion and professional standards. Thus, Irwin LJ observed:

Common law liability would be measured against those standards, with the relevant professional practice and guidance very much to the fore. Indeed it seems to me evident, given the difficulty of such decisions, that the Courts would allow considerable latitude to clinicians faced with such a dilemma. Once again in relation to this policy reason, I reach no decided conclusion save that the matter is to my mind clearly arguable.

Floodgates?

A key concern with the imposition of any new duty of care is the potential to “open the floodgates” to a raft of similar, but slightly different, claims. The Defendants argued that medical practitioners will hold large amounts of information that may be relevant to third parties – such as information about sexually transmitted diseases, highly contagious diseases and terminal illnesses – in which third parties (such as sexual partners and family members) may have an interest.

However, Irwin LJ did not perceive any difficulty in defining the bounds of ABC’s proposed duty of care:

it seems to me this policy reason lacks any bite when applied to geneticists. As will already be clear from the professional guidance to which I have referred, and indeed from the inherent nature of genetic medicine, geneticists frequently acquire definite, reliable and critical facts of clinical significance about their patients’ relatives.

The reliability of the information and its importance to interested family members who would become patients if that information were disclosed meant that, in Irwin LJ’s opinion, the case of genetic information is distinguishable from the other scenarios raised by the Defendants.

Judicial restraint?

Finally, Irwin LJ dealt with the question of whether imposition of the alleged duty of care would be inconsistent with the incremental and cautious development of the law. His Honour held that it was not because of American authorities (Tarasoff v Regents of the University of California (1976) 551 P.2d 334 and Safer v Pack 291 N.J.Sup. 619, 677 A. 2d 118 8) in which courts recognised a duty to disclose or warn an interested third party about risks of serious physical harm (in Tarasoff) or a genetic predisposition to metastatic bowel cancer (in Safe r), in spite of the obligations of confidence owed by health practitioners.

Having found that ABC’s claim was arguable, the Court reinstated ABC’s claim and remitted the matter for trial.

Australian relevance

ABC’s claim is now free to progress to trial. It will be a matter for the courts to determine whether a duty of care to disclose genetic information to interested third parties exists. Given the difficult questions of law and policy to be answered, there is a strong prospect that the case will go on appeal from trial.

This case raises the question about whether a similar duty of care could be recognised in Australia. At the outset it is important to note that an Australian court applies a different test to determine the existence of a duty of care. Rather than the three step test used by English courts, the High Court of Australia has made it clear that Australian courts must consider all the ‘salient features’ of a case when deciding whether or not to impose a duty of care, including the existence of other duties and obligations. Thus, the existence of State and Federal privacy legislation will be one consideration determining the existence (if any) of a duty of care owed to a patient’s genetic relatives. Given the fragmented nature of privacy regulation in Australia, courts would need to grapple with the possible implications of recognising a duty that could possibly conflict with those protections. Further complicating the assessment is that the applicable privacy framework differs from jurisdiction to jurisdiction, and on the private or public nature of the health service provider.

At a Federal level, the Privacy Act 1988 (Cth) allows private-sector organisations to disclose a patient’s genetic information without consent in order to lessen or prevent a serious threat to a genetic relative of the patient provided that the disclosure is made to the relative and is made in accordance with Guidelines made under section 95AA of the Privacy Act 1988 (Cth) (which require medical practitioners to consider certain matters, to discuss disclosure with other health practitioners and to document the process leading to disclosure). Though in some jurisdictions, such as Victoria, private sector organisations will also be subject to State-based privacy legislation.

For public sector organisations, only the relevant state-based privacy protections will apply to genetic information. However, the existence and scope of these protections differ from jurisdiction to jurisdiction. Some jurisdictions, for example, do not expressly address genetic information, others define genetic information as health information (which may usually only be disclosed without consent in extenuating circumstances, such as where there is a serious and imminent threat to a third party’s life, health or wellbeing) while New South Wales has moved to mirror the Federal protection.

Given the increasing prevalence and utility of genetic information in health-care settings, it may only be a matter of time until a similar case is brought in Australia. It will be interesting to see how a court would deal with the intersection between a duty of care owed to third parties, and the (patchwork) privacy protections that limit the disclosure and sharing of health (and particularly genetic) information.

If you have any questions arising out of this article, please contact Chris Chosich on (03) 9865 1329 or email chris.chosich@healthlegal.com.au

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