Doctor/patient confidentiality in genetic disease case
29 February 2020
ABC v St George’s Healthcare Trust and others  EWHC 455 (QB)
The High Court has ruled that the health authorities owed a duty of care to the daughter of their patient who suffered from the hereditary neurodegenerative order Huntington’s Chorea, to inform her about his condition. But in the circumstances, Yip J concluded that the duty was not breached and that causation had not been established.
The facts of this case are set out in our previous post about the interlocutory proceedings before Nicol J. It will be recalled that the father had killed the claimant’s mother and was detained in a psychiatric hospital at the time of these events.
The outcome of the hearing on the merits has been awaited with anticipation because the finding of an obligation on a doctor to inform a third party may undermine the doctor-patient confidentiality rule, and this in turn would have a significant impact on the health services, particularly as genetic medicine increases the number of diagnoses that affect not just the individual patients but their relatives as well.
The issues before the Court
Now that the full trial of the merits of this case has been held, we have a more nuanced picture of the legal duties and defences. For a start, there were a number of defendants, not just the father’s clinician, but the medical team that made up the family therapy group that treated both claimant and her father. Furthermore evidence has come to light about the claimant’s attitude to the dilemma that she faced which has had implications for the decision on causation.
But first, let’s look at the issues that Yip J had to determine in this important case involving the implications for medical confidentiality in the context of hereditary disease.
i) Did the defendants (or any of them) owe a relevant duty of care to the claimant?
ii) If so, what was the nature and scope of that duty?
iii) Did any duty that existed, require that the claimant be given sufficient information for her to be aware of the genetic risk at a stage that would have allowed for her to undergo genetic testing and termination of her pregnancy?
iv) If a duty of care was owed, did the defendants (or any of them) breach that duty by failing to give her information about the risk that she might have a genetic condition while it was open to her to opt to terminate her pregnancy?
v) If there was a breach of duty, did it cause the continuation of the claimant’s pregnancy when it would otherwise have been terminated? (This involves consideration of whether the claimant would in fact have had the opportunity to undergo genetic testing and a termination in time but for the breach, and whether she would have chosen to do so.)
Yip J observed that, in considering whether to grant the defendants a strike out, the Court of Appeal had focussed upon whether it was fair, just and reasonable to impose a duty of care towards the claimant on the defendants. The hearing in the Court of Appeal had occurred before four recent decisions in the Supreme Court where the scope of the duty of care had been put under fresh scrutiny:
Robinson v Chief Constable of West Yorkshire Police  UKSC 4; James-Bowen & others v Commissioner of Police of the Metropolis  UKSC 40; Darnley v Croydon Health Services NHS Trust  UKSC 50 (there’s my discussion on this case with Owain Thomas QC on Law Pod UK Episode 47 ) Poole Borough Council v GN & another  UKSC 25.)
The judge commented:
Through those cases, the Supreme Court has stressed that there is no general principle capable of providing a practical test applicable in every situation in order to determine whether a duty of care exists and, if so, its scope. Caparo Industries plc v Dickman… does not provide a single tripartite test requiring consideration of proximity, foreseeability and whether it is fair, just and reasonable to impose a duty in every case. Rather, the courts must use existing authorities to apply established principles to the facts of the case. It is only in a novel type of case, where established principles do not provide an answer, that the courts need to ask whether a duty of care should be recognised, developing the law incrementally and by analogy with existing authority. The exercise of judgment in those circumstances involves consideration of what is fair, just and reasonable.
For the defendants, Philip Havers QC of 1 Crown Office Row maintained that this was a novel case involving a negligent omission in respect of which no duty has ever previously been recognised by the courts. He contended that the court should not impose a duty of care here. Even if the claimant could establish the necessary proximity and foreseeability of harm (which was not conceded), it would not be fair, just and reasonable to impose a legal duty in the circumstances of this case. Mr Havers advanced policy reasons for not imposing a duty to the claimant, placing particular reliance on the duty of confidence owed by the defendants to the father and the conflict between that duty and the duty the claimant was contending for.
Yip J accepted the importance of the duty of confidence. She noted that there was a strong public interest in respecting medical confidentiality which extends beyond the privacy of the individual patient. In Z v Finland (1998) 25 EHRR 371, the European Court of Human Rights stated that respecting confidentiality of health data is a “vital principle in the legal systems of all the Contracting Parties to the Convention”:
It is crucial not only to respect the sense of privacy of a patient but also to preserve his or her confidence in the medical profession and in the health services in general. Without such protection, those in need of medical assistance may be deterred from revealing such information of a personal and intimate nature as may be necessary in order to receive appropriate treatment and, even, from seeking such assistance, thereby endangering their own health and, in the case of transmissible diseases, that of the community. 
As to the relationship of the claimant to some of the defendants, the judge was in no doubt that she was a patient of the family therapy team (the second defendant). Alternatively, even if the claimant was not strictly their patient, her relationship with the trust was so directly analogous to that of a patient undergoing therapeutic intervention that an equivalent duty would arise in relation to the delivery of that therapy. The second defendant therefore had a proximate relationship with the claimant.
But that relationship provided no easy answer. As the judge said,
The common law firmly recognises personal autonomy in relation to medical risks. The old paternalistic view that a doctor might withhold information about risks because it is the doctor’s assessment that it is better for the patient not to know is no longer good law. Had the information about the genetic risk come to the defendants in the context of a patient relationship with the claimant, they would have been bound to disclose it. In fact, the defendants’ contemporaneous assessment was that the information should be communicated to the claimant for her sake. The difficulty was that the information came to the defendants in the course of treating her father and, absent his consent, its disclosure conflicted with his confidentiality.
The fact that the claimant was participating in family therapy did not mean that she was in a doctor-patient relationship with Dr Olumoroti, who was the claimant’s father’s psychiatrist. He was not involved with the delivery of the family therapy. Yip J did not accept the claimant’s submissions to the effect that, through participating in family therapy, the claimant became her father’s psychiatrist’s patient. “It would be clinically and ethically inappropriate to take on clinical responsibility and treatment of both a patient and their relative in forensic clinical practice.”
Dr McEntagart (the father’s geneticist) explained that in discussing the case within her own team, they felt there was no therapeutic benefit to either of the daughters because there was no known treatment or cure for the disease. She contrasted that to other conditions such as the BRCA1 gene linked to breast cancer, where knowledge could make a difference. She was not of the view that the potential for the claimant to terminate her pregnancy could be termed a “therapeutic intervention” such as might justify breaching confidentiality.
Initially, the father refused to be tested for Huntington’s, but eventually agreed to testing only on the basis that the results would not be shared with family members. That option was one of the standard options presented on the pro forma consent form used for seeking consent to genetic testing.
It turns out that the daughter heard about her father’s genetic condition from his psychiatrist. She claimed, and the judge accepted, that the psychiatrist accidentally “let slip” the news about Huntington’s Chorea, information which did not worry her at the time because she didn’t realise it was an hereditary condition until she looked it up on the internet.
Consider this comment by the group of consultants who were responsible for the father and running the family therapy group which the claimant and the father attended:
It is possible that the non-disclosure of the positive test result [by the father] is either a benevolent act to protect the family or as an act of aggression.
Another interesting perspective on this dilemma relates back to one of the established exceptions to the duty of confidentiality between doctor and patient: the risk of violence to a third party. When the father’s doctors were considering this problem, they pondered whether Huntington’s disease played a part in the offence and whether that provided a reason for disclosure either on the basis of protecting the daughters from a risk of violence as well as allowing her reproductive choice.
The psychiatrist’s evidence was that he would not have made the disclosure at the time when the claimant arguably had a chance of seeking a termination. But he considered that it would have been necessary for the claimant to know of her father’s condition in future, when he was to move into the community, since it was anticipated that she was to be part of his support network. The claimant placed significant weight on this point, arguing that if it was inevitable that she would have to be informed of her father’s diagnosis within a short time then it was illogical to place much weight on his right to maintain confidentiality.
Arguments before the court
The real thrust of the claimant’s case was summarised by the judge as follows:
i) The defendants acquired genetic information about her father in the course of treating him.
ii) That information directly affected her.
iii) Not having that information could foreseeably lead to the claimant being unable to exercise her reproductive autonomy.
iv) The unusual factual matrix gave rise to a proximate relationship between the claimant and the second defendants.
v) The defendants knew that the claimant had already suffered psychological harm and there was a foreseeable risk that withholding the genetic information would cause her further harm.
vi) The defendants actively considered the impact of the information on the claimant and whether it should be disclosed to her at a time when it was open to her to terminate her pregnancy.
vii) In the circumstances, the defendants owed her a duty of care in relation to the handling of the genetic information.
Should the court recognise a duty of care in this novel situation?
While the defendants accepted that it remained open to the court to find a duty by incremental extension, they argued that the duty contended for in this case would not be an incremental step. Rather it would have far-reaching implications and would represent a giant step inconsistent with the proper, incremental development of the common law. Applying the principles in Caparo Industries PLC v Dickman, counsel for the defendants argued that the court should not find that any duty is owed by a doctor or hospital trust to a relative of a patient or to any third party outside the doctor-patient relationship.
The claimant countered that the fact that she was likely to suffer harm if the information about her genetic risk was withheld from her was not only foreseeable, it was actually foreseen by her father’s psychiatrist. Dr Olumoroti accepted in cross-examination that he had thought it might be harmful to the claimant if information was kept from her. He said he had discussed that with the father.
The irony is that, as the judge found, responsibility for the decision not to inform the claimant lay with Dr Olumoroti – and he was the person who did in the end disclose the information albeit in rather unorthodox circumstances. Nevertheless, his decision at the critical time – not to disclose – was to be judged against the standards of a reasonable forensic psychiatrist. The forensic psychiatry team sought the input of the genetics team and their joint decision was that he had abided by the rules.
The father’s geneticist acknowledged that being deprived of the opportunity to undergo a termination could be harmful but had not seen this as reaching the bar of “serious harm” to justify disclosure and breaching confidentiality.
The Court’s conclusions
Yip J found there was no evidence to indicate that the claimant could have been alerted to the genetic risk without a direct breach of the father’s confidentiality.
Duty of Care
The claimant was a patient of the defendant’s family therapy team. The family therapy was provided by the hospital trust as part of the health service that it offered. Therefore, the duty owed by hospital trusts to patients to deliver their services competently applied to all those undertaking the family therapy. This was not a novel duty, simply one that applied established principles to a new factual situation, as in Darnley.
However, even though the second defendant did owe a duty to the claimant through her participation in family therapy, this claim could not properly be characterised as badly performed family therapy such as to bring it within the scope of the duty identified above. The relevant information did not become known to the defendants within the context of family therapy. It was acquired in the context of the treatment and management of the claimant’s father.
Participation in family therapy does not bring with it a right to receive confidential information about other participants. On the contrary, the evidence before me illustrates that the maintenance of confidences is often an important part of the family therapist’s role. The claimant was told that she could discuss matters in confidence without her father being told. It is obvious that this would also operate in reverse.
The reason the family therapists could not tell the claimant about the father’s diagnosis without the agreement of Dr Olumoroti was not that he was the clinician in charge of the family therapy but rather because he was the father’s treating clinician and had acquired the information in that role.
The duty owed to the claimant in the context of family therapy was quite simply to conduct the therapy with reasonable professional skill and care. Even if the wide duty contended for was accepted, it is doubtful that it could capture the claimant’s case that she should have been provided with information about her genetic risk to make decisions about her pregnancy.
In all the circumstances, the judge found that the breach of duty could not fall within the scope of the duty owed to the claimant, whether as a “patient” of the family therapy team, or as a “participant” in family therapy (the difference between a mere matter of semantics).
The limited duty that the judge found that the family therapy team owed the claimant a duty of care was not a free-standing duty of disclosure nor was it a broad duty of care owed to all relatives in respect of genetic information. The legal duty recognises and runs parallel to an established professional duty and is to be exercised following the guidance of the GMC and other specialist medical bodies.
Nor, in the judge’s opinion, was this a a case of assumption of responsibility falling within the principles of Hedley Byrne & Co Ltd v Heller & Partners Ltd  AC 465 because there was no question of the claimant having relied on the defendants to undertake the balancing exercise as to whether she should be told of her father’s diagnosis. As is acknowledged, she knew nothing of it.
As for Dr Olumoroti, the judge found that there was no doctor-patient relationship between him and the claimant.
The timescale for the necessary counselling and testing of the claimant in time for her to undergo a termination would have been very tight, even without allowing for fetal testing. All responsible geneticists would have advised the claimant not to rush into genetic testing. All the experts acknowledged that if the claimant had learnt of her risk of Huntington’s during pregnancy it would have presented an extremely challenging situation.
The judge concluded that, if the claimant had deferred a decision about whether she would undergo testing herself until after her father had been tested, there would not realistically have been time for her to be tested and arrange a termination.
She would have been counselled about the timescale and become aware that if she were to have a termination it would be at a relatively late stage, certainly after 20 weeks gestation. The judge concluded that after allowing for testing and counselling, she would probably have reached 22 weeks gestation so that feticide would have been required.
I conclude that the claimant has not proved that she would have undergone a termination if notified of the risk during pregnancy. Accordingly, even if she had established a breach of duty, she would not have succeeded on the issue of causation.
Nor did the judge accept that the claimant had established that she would have been tested and undergone a termination had the risk been disclosed to her during her pregnancy. Indeed the court heard that the claimant had resolved not to inform her sister about their father’s condition once she had the information. Although this evidence was not decisive, the judge concluded that the claimant had not proved that she would have undergone a termination if notified of the risk during pregnancy. Accordingly, even if she had established a breach of duty, she would not have succeeded on the issue of causation.
In all the circumstances, the common law claim failed on breach of duty and causation.
Philip Havers QC of 1 Crown Office Row acted for the defendants in this case. Elizabeth-Anne Gumbel QC and Hannah Noyce of 1 Crown Office Row for the claimant.
See related posts on the law and genetics here
This situation should never have to arise. The person undergoing the genetic testing should have a duty of care to pass on relevant information to their offspring, who may have the same condition or pass it on to their own children.
If the person with the duty of care lacked the mental capacity to understand and pass down the information, then the medical team should take on the responsibility of informing the descendants.
This particular case, where there wasn’t actually time to make appropriate use of the information, should not be used as an excuse for not establishing a principle which affects the future of generations to come.
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