Mon, 29 Jun 2020
This article was produced for the AvMA Lawyers Service Newsletter and is republished with the kind permission of AvMA.
This article is an extended version of Tim Newman's original article on Patient Confidentiality.
ABC v (1) St George’s Healthcare NHS Foundation Trust (2) South West London and St George’s Mental Health NHS Trust (3) Sussex Partnership NHS Foundation Trust  EWHC 455 (QB)
Confidentiality is crucial to the relationship of trust and confidence between patients and their doctors. Huntington’s disease is a hereditary condition. Children of a sufferer have a 50% chance of developing the condition usually as an adult. It leads to severe physical and cognitive impairment. It is life shortening and in its later stages full-time care is required. If a father is suspected of suffering this condition, should his daughter be told even if her father has not consented? ABC v St George’s Healthcare NHS Trust looked at patient confidentiality in just such a situation.
In 2007 the Claimant’s father (XX) killed his wife, the Claimant’s mother. He was convicted of manslaughter on the grounds of diminished responsibility and made the subject of Hospital and Restriction Orders under the Mental Health Act 1983. He was detained in the Shaftsbury Clinic at the Springfield Hospital which was run by the Second Defendant. While there he was seen by a social worker employed by the Third Defendant. In late June 2009 XX was suspected of having developed Huntington’s disease and referred to the First Defendant’s St. George’s Hospital. He was under the care of Dr Olumoroti, a consultant forensic psychiatrist. XX refused to undergo genetic testing. He did not want the Claimant or her sister to know because they would be distressed and such knowledge could impact on their decision about whether to have children or not. Neither daughter had started a family.
His patient confidentiality was respected by the First and Second Defendants. Huntington’s disease was confirmed in November 2009. The Claimant took part in family therapy sessions arranged through the Second Defendant since she was supportive of her father as he approached possible release into the community. The Claimant became pregnant. She gave birth to a daughter in April 2010. On 23.8.10 Dr Olumoroti accidentally informed the Claimant about her father’s diagnosis of Huntington’s Disease. She subsequently underwent testing, and in January 2013 was herself diagnosed as suffering from Huntington’s Disease.
The Claimant alleged that the Defendants were negligent in not informing her of XX’s condition and had breached her rights under Article 8 of the European Convention on Human Rights. Her case was that had she been informed, she would have been tested. If the test was positive, she would have terminated her pregnancy. She sought damages for the continuation of her pregnancy, psychiatric damage and consequential losses. The parties agreed that were the Court to find an actionable breach of duty on the part of the Defendants (or any of them) and that, but for that breach, the Claimant would have terminated her pregnancy, she should recover damages of £345,000.
The GMC had issued relevant guidelines in relation to patient confidentiality in 2004 and 2009. Specific guidance had also been given by the relevant professional bodies in the fields of genetics and psychiatry.
The evidence in respect of liability was heard by Yip J in November 2019 and judgment was handed down in February 2020. Prior to that, in May 2015, the Defendants successfully persuaded Nicol J to strike out the Claimant’s case on the ground that there was no reasonably arguable duty of care to her. This decision was reversed by the Court of Appeal in May 2017.
Yip J dismissed the Claimant’s claim against all three Defendants. She found (para 138) that the Claimant was a patient of the Second Defendant’s family therapy team. Even if better described as a “participant” in family therapy she found that position directly analogous to the situation of a patient undergoing therapeutic intervention. In Yip J’s view “patient” or a “participant” in relation to family therapy was a matter of labelling which did not affect the substantive position as to the duty owed. 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. Yip J regarded that as applying established principles to a new factual situation rather than recognising a novel duty.
The Claimant would not naturally be described as a patient of the First Defendant’s mental health unit where her father was accommodated. No patient record was created for her whereas entries relating to the family therapy were made in XX’s medical records. However, in the context of family therapy, the Claimant’s role was not simply that of XX’s relative. Her participation was not solely for XX’s benefit but was also designed to focus on her own needs and to offer a therapeutic benefit to her. The duty to patients to deliver that service competently and with professional skill and care applied to all those undertaking the family therapy. Participation in the therapy did not bring with it a right to receive confidential information about other participants such as XX. Similarly, the Claimant had been told that she could discuss matters in confidence without XX being told (para 141).
In fact, the Second Defendant’s family therapy team took the view that the Claimant ought to have been informed about her father’s diagnosis but did not do so. The responsibility in deciding whether to maintain confidentiality lay with Dr Olumoroti as the doctor responsible for XX’s clinical care. Dr Olumoroti had received that information in his role as XX’s doctor - not as part of the family therapy. The Claimant was not in a doctor-patient relationship with Dr Olumoroti but remained a third party to the relationship between each of the Defendants and XX (para 143).
Yip J considered whether a duty was owed to the Claimant and held that it would be inappropriate for her to attempt to define the limits of any duty of care owed by doctors to those who are not their patients. That was not the way in which the incremental development of the common law operated. The duty contended for by the Claimant was not a free-standing duty to disclose genetic information. Any duty could arise only where the outcome of a proper balancing exercise required XX’s confidentiality to be overridden. Yip J considered examples such as the child abuse cases and those where vasectomies had failed (paras 167 – 169) and concluded that the courts had been willing to recognise that doctors or health authorities might owe a duty of care to persons other than their primary patient but that such a duty could only arise where there was a close proximal relationship between claimant and defendant.
The Judge found no close proximal relationship between the First Defendant and the Claimant. The position of the Second Defendant was different. The Claimant’s participation in the family therapy was an important fact. The Second Defendant’s clinicians had significant information about the Claimant - the circumstances of her father’s offence, its effect on her, the family dynamics and the lack of support available to her. There was therefore a close proximal relationship between the Claimant and the Second Defendant.
A balancing exercise
The risk of harm to the Claimant if information about her genetic risk was withheld was foreseeable and had been foreseen by the Second Defendant. The Judge concluded that it was fair, just and reasonable to impose on the Second Defendant a duty to balance the Claimant’s interest in being informed of her genetic risk against her father’s interest in preserving confidentiality and the public interest in maintaining medical confidentiality generally. Any claimed duty would necessarily be tested by reference to the Bolam/Bolitho principles.
The Judge held that if defendants properly conducted a balancing exercise in accordance with professional guidance and reasonably concluded that disclosure should not be made, they will have discharged their duty even though others may have taken a different view. Courts will recognise the pressures of day-to-day clinical practice and afford latitude to clinicians taking these difficult decisions.
Yip J carefully analysed the Claimant’s evidence at trial and, while accepting the truthfulness of her evidence, she concluded that the Claimant’s contention that she would have sought genetic testing and arranged a termination was reached with the benefit of hindsight and would not have been her decision at the time. Causation was not proved.
The way ahead
The timeframe of the case meant that Yip J who heard the evidence on liability at the end of 2019 had to consider guidelines going back as far as 2004. The guidelines relevant to the facts in ABC are set out in paragraphs 41 – 44 of her judgment.
Disclosing confidential information without a patient’s consent will be very unusual. Words such as “exceptional” and “rare” appear in more recent guidelines for various disciplines which emphasise the primacy of confidentiality. The 2017 publication from the GMC sets out 8 principles. Para 8f states: “Ask for explicit consent to disclose identifiable information about patients for purposes other than their care or local clinical audit, unless the disclosure is required by law or can be justified in the public interest.” At paras 22 and 63 the benefit of confidential medical care to society as well as the individual is emphasised but exceptions are recognised. Disclosure may be justified “to protect individuals or society from risks of serious harm, such as from serious communicable diseases or serious crime”; at para 64 “…… Where a patient has refused consent, disclosing personal information may be justified in the public interest if failure to do so may expose others to a risk of death or serious harm. The benefits to an individual or to society of the disclosure must outweigh both the patient’s and the public interest in keeping the information confidential;” and at para 75, in a section headed “Disclosing genetic and other shared information”, this is repeated and it continues “if a patient refuses to consent to disclosure, you will need to balance your duty to make the care of your patients your first concern against your duty to help protect the other person from serious harm.”
The Joint Committee on Genomics in Medicine 2019 guidelines recognise at para 2(1) that health professionals can find it difficult to know how to preserve the confidentiality of one patient and at the same time alert a family member to the risk of a particular condition. It is suggested that alerting a relative to the risk of developing a condition because of a family history or for some other reason which the clinician does not need to specify may be a solution as long as the details of the patient’s condition remain confidential. “Providing information about a familial risk is not the same as disclosing personal medical information about a relative, even if a relative subsequently uses this to make inferences about others.”
It is difficult to see how in the ABC case the familial risk could have been disclosed to the daughter without her being able clearly to infer that the risk could only have come from her father. These 2019 guidelines refer to the Court of Appeal decision in ABC: “The Court of Appeal stated that the position of geneticists was different to that of other practitioners, since, by the nature of their work they ‘frequently acquire definite reliable and critical facts of clinical significance about their patients’ relatives’, and are already required by their professional guidance to consider whether disclosure of such information should be made to family members.” The guidelines do however go on to identify the need to follow the GMC guidance and balance the obviously competing interests of patient and family member.
So far as the Royal College of Psychiatrists is concerned, the 3rd edition guidelines set out as a starting point at para 64: “if the patient has the capacity to refuse disclosure to the family/carers and does refuse, you should respect this wish unless there are overriding reasons of public interest not to do so.” This is repeated at para 87 where reference is made to the GMC guidelines and the need to inform the patient unless to do so would increase the risk of harm or inhibit effective investigation of risk.
Once a patient has been diagnosed with a genetic illness or condition a doctor will explain the likelihood of close relatives being at risk. Encouraging a patient to discuss such risks with relatives will, in turn, alert them to those risks. Should a patient refuse either to disclose those risks or to permit a doctor to disclose them, the guidance variously available provides that a doctor may disclose this information if it could be justified in the public interest. The starting point is not to disclose. There is a balance to be struck between patient confidentiality and a breach of that confidentiality.
The tragic and unusual facts of the ABC case bring into sharp relief the competing interests but Yip J was clear that there had been adequate consideration of that balance and that the Defendants were not in breach of their duty to the Claimant. The First Defendants owed no duty to the Claimant because XX was their patient. A duty to third parties can only arise where there is a close proximal relationship between a claimant and a defendant. Here the Second Defendant had a close proximal relationship because of its work with the Claimant in family therapy. There was therefore a balance to be struck between breaching patient confidentiality and the interests of a third party in being informed of facts which breached that confidentiality. Yip J found that the issue had been considered by the healthcare professionals and that the decision not to breach XX’s confidentiality had struck the appropriate balance such that no breach of duty had been made out.
The idea of disclosing medical information without the permission of a patient is not a new concept. Take, for example, the position of a GP who has to disclose in appropriate circumstances a patient’s unfitness to drive a vehicle; or the obligation in respect of communicable diseases to report such matters to the appropriate authority. Clearly, that is in the public interest. Is it so when those potentially harmed are a set of close relatives? What, in general are the risks of such information somehow falling into the wrong hands and should that militate against any disclosure of genetic information? Would, for example, volunteers for genetic testing in the field of medical research be reluctant to put themselves forward if they faced the possibility that genetic information might be disclosed to close relatives against their consent?
For some, sympathy may naturally lie with the Claimant in ABC. These are issues which, in one form or another will no doubt be tested in the years ahead. It is likely that such cases will be relatively few and far between. They are fact sensitive and likely to arise only where there is close proximity between a doctor and third-party. Clinicians will need to take account of professional guidelines. Non-disclosure will be the starting point. A fine balance will need to be struck in some cases. Decisions will be judged according to Bolam principles with reasonable latitude being afforded to busy clinicians at work. The distinction between “patient” and “participant”, as Yip J stated the Claimant might more properly be described, may or may not be the subject of debate but certainly proximity between doctor and third-party will be key.
  EWHC the 445 (QB)
 By the end of the trial, no specific allegations of negligence were made against the third defendant.
 Yip J held that the Human Rights Claim added nothing to the claim in negligence. Nicol J and The Court of Appeal had been of the same view.
 There are now 2017 Guidelines (updated in May 2018 to take account of GDPR).
 “Consent and confidentiality in genomic medicine” now in its 3rd edition (July 2019). Joint Committee on Medical Genetics of the Royal College of Physicians, Royal College of Pathologists and British Society for Human Genetics. “Good Psychiatric Practice – Confidentiality and information sharing” (3rd edition, November 2017 CR209) Royal College of Psychiatrists
  EWHC 1394 (QB)
  EWCA Civ 336
8 Darnley v Croydon Health Services NHS Trust  UKSC 50;
 Caparo Industries plc v Dickman  2 AC 605
 Note that the Claimant decided not to inform her sister of the situation. The sister later tested negative.
 Para 2.2.2 The liability trial had not yet taken place when the Guidelines were published
 The mixture of reported and direct speech is unsatisfactory. See paras 40 – 45 of Irwin LJ’s judgment for the context.
 See para 4.3