Duty to Tell a Child About Risk of Genetic Condition?

ABC v St George’s Healthcare NHS Trust & Ors [2020] EWHC 455 (QB) 

This article originally appeared in Issue 5 (May 2020).

This fascinating judgment of Yip J considers whether the Defendants had a duty of care to alert the Claimant (“ABC”) to the risk that she had inherited the genetic mutation for Huntington’s disease in time for her to terminate her pregnancy. 

Background 

As noted by Yip J at [6], the facts of the case were both “tragic and unusual.” ABC’s father (“XX”) murdered her mother in 2007. XX was convicted of manslaughter by reason of diminished responsibility and detained at a hospital run by the Second Defendant (“D2”). He was under the care of a multi-disciplinary team which was led by Dr Olumoroti, a consultant forensic psychiatrist. 

XX was investigated for Huntingdon’s Disease by the First Defendant (“D1”). By around July 2009 it appeared probable that XX had Huntingdon’s Disease, but he refused to be conclusively tested and did not want his two daughters to be told about the investigations. He was aware that it would likely impact upon their decision to have children. Neither daughters had started a family. 

Huntingdon’s Disease is a neurodegenerative disorder. It is genetic and incurable with symptoms normally appearing in adulthood. Children of those with the condition have a 50% chance of inheriting the genetic mutation. 

All of the Defendants became aware of XX’s potential diagnosis and the implications this could have for ABC and her sister. 

In July 2009 ABC became pregnant. She was initially unsure about the pregnancy and was not in a settled relationship. ABC told a social worker, under the responsibility of the Third Defendant, about the pregnancy. She also told her father who told his psychologist. He was adamant that ABC should not be told about the potential for Huntingdon’s Disease “and ‘so jeopardise the pregnancy’”. 

XX underwent genetic testing and in November 2009 it was confirmed that he had Huntingdon’s Disease. 

ABC gave birth in April 2010. In August 2010, D2 and D3 visited the Claimant and told her about her father’s diagnosis. It is accepted that this was a breach of the father’s confidentiality. 

By this point, ABC’s sister was also pregnant and in the early stages. Neither ABC nor her father wanted her sister to know about the diagnosis. Following much discussion by clinicians at D2, it was agreed that ABC’s sister would not be told. She gave birth and found out about the diagnosis afterwards. 

ABC tested positive in 2013 for Huntingdon’s Disease. She will likely develop the condition in 5-10 years. It is not yet known if her child has the condition. ABC’s sister was also tested and found to be negative. 

The legal basis of the claim 

The claim was brought in negligence and under the Human Rights Act 1998 for breach of Article 8 ECHR. However, almost all of the argument focused upon the negligence aspect of the claim. 

As summarised at [23], ABC had to prove that the Defendants ought to have given her enough information to warn her of the risk of Huntingdon’s Disease at a time when termination of pregnancy was still an option. She then had to prove that, if she had known of the risk, she would have undergone genetic testing and found out that she had the Huntingdon’s gene, and that she would have had a termination. 

Legal background 

The claim was originally struck out in 2015 by Nicol J on the basis that there was no reasonably arguable duty of care. This decision was appealed to the Court of Appeal who, in 2017, quashed the decision striking out the claim and remitted the case for trial. It then came before Yip J for a full trial in late 2019 with judgment in February 2020. 

Is there a duty of care? 

The Claimant had to show that one or all of the Defendants had a duty of care to give her information as to her genetic risk. The Claimant relied on 3 alternative arguments summarised at [30]. 

However, for the purposes of this article, I will focus only on the last argument, which was that a new duty of care should be found to exist. That new duty was summarised at [158] as:

“a duty to balance the Claimant’s interest in being informed of her risk of a genetic disorder against her father’s interest in having the confidentiality of that diagnosis preserved.” 

The duty contended for was limited to serious genetic conditions and first-degree relatives. Furthermore, the standard of care would be measured by reference to the well-known principles set out in the Bolam and Bolitho cases. The Claimant’s case was that, having balanced the respective interests, the only right outcome was disclosure. 

Proximity and foreseeability of harm 

Yip J went on to recognise that in previous cases, the courts had recognised that doctors may owe duties to multiple people, not just their own patients, but that such a duty may only arise where there is a proximal relationship between the claimant and defendant. 

At [171], Yip J found that there was no proximal relationship between D1, including the geneticists, and ABC. They knew of ABC’s circumstances but no more, and only met ABC’s father in October 2009. Likewise, the claim against D3, the social worker, fell away. 

The issue was therefore as to the existence of a duty between ABC and D2. At [173] to [174] Yip J found that there was both proximity and foreseeability of harm between ABC and D2: 

“As I have found, the claimant was a patient of the second defendant. Although I have found that the decision whether to provide her with information about her genetic risk lay outside the scope of the duty owed to her in the context of family therapy, her participation in the family therapy is an important part of the factual matrix. The second defendant’s clinicians had a significant amount of information about the claimant and her circumstances. They knew that she had suffered psychological harm as a result of her father’s offence and was in a vulnerable situation. They were working with her to help her understand and come to terms with the offence. They were also anticipating that she would support her father in the community and had previously shared medical information with her. They also knew that the claimant had very little support available to her. They knew of the family dynamics. Her mother had been killed and her sister was struggling with her own situation. They knew the claimant was not in a settled relationship. There was a direct line of communication with the claimant. Had they decided to disclose the information to her, the family therapy team offered a route to do so in a supportive environment. In those circumstances, there was a close proximal relationship between the claimant and the second defendant. 

That the claimant was at risk of suffering harm if the information about her genetic risk was withheld from her was not only foreseeable, it was actually foreseen by the second defendant. That is clear both from the medical records and the evidence of the defendants’ witnesses at trial. 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 XX. 

Fair, just and reasonable 

As to whether it was fair, just or reasonable to impose a duty, this was considered at [176] to [188]. The Defendant advanced a number of policy reasons as to why it would not be fair, just and reasonable to impose a duty: 

Each argument was considered, and rejected, by Yip J. As to (i), she noted that it was already recognised that the duty of confidence was not absolute and, in these situation, doctors were already at risk of being sued whichever decision they took. She found at [178] that the courts would likely “allow considerable latitude to clinicians faced with the dilemma of conflicting obligations.” She rejected (ii) at [179], again noting that the duty of confidence was already not absolute, and this had not damaged the relationship of trust and confidence between patients and doctors. 

As to (iii), at [180] Yip J noted that this issue simply did not arise on the facts of the present case. Furthermore, she commented that post-Montgomery, the paternalistic viewpoint that doctors could withhold information for the patient’s own benefit was no longer good law and that, if the Defendants had found out the information about C’s genetic risk in the context of their own patient/doctor relationship to her, they would have been bound to tell her and could not have withheld that information. 

As to (iv), Yip J rejected [182] the argument that recognition of this duty could open the ‘floodgates’. She noted that the facts of this particular case were very unusual and “recognising a duty to her is nowhere near the giant leap that might be required to recognise a duty to multiple relatives around the world.” 

Furthermore, she rejected at [183] the argument that imposition of the duty would use up NHS time and/or resources. As encapsulated by one of the doctors involved, “Arguably, the time and resources spent in not informing ABC were in the instance much greater than had she been informed as part of the relationship she already had.” 

At [184] Yip J also refused to limit the imposition of the duty of care to genetic cases. As she noted at [184], other clinicians in other disciplines come across information which may reveal a serious risk to another person, and there is no reason to treat genetic information differently. At [185] she found that: “the need for close proximity before a doctor is found to owe a duty to any person outside the immediate doctor-patient relationship acts as sufficient restraint on uncontrolled extension of the duty of care owed by medical professionals.” 

As to the final argument, (v), Yip J found at [186] that, contrary to the Defendants’ submission “Imposing a legal duty which is consistent with the professional guidelines acts to enforce the guidance and potentially allows an injured party to recover compensation where their interests have not been properly considered in line with that guidance.” 

She also noted that [187] that recognition of a duty in this case would be consistent with Article 8 ECHR, which encompasses both the right to medical confidentiality and a right to medical information about oneself and reproductive autonomy. Thus “recognising a common law duty to both parties to conduct a proper balancing exercise in accordance with the professional guidance is consistent with the way in which the law has developed to take account of the Convention.” 

Finally, at [188], Yip J found that “it is fair, just and reasonable to impose on the second defendant a legal duty to the claimant to balance her interest in being informed of her genetic risk against her father’s interest in preserving confidentiality in relation to his diagnosis and the public interest in maintaining medical confidentiality generally.” 

If a duty exists, what is the standard of care? 

She explained that the Bolam and Bolitho tests would be applied by a court in deciding whether the duty had been breached, noting at [193] and [194] that: 

“If a defendant has conducted a balancing exercise properly in accordance with the professional guidance and has reasonably concluded that disclosure should not be made, they will have discharged their duty. No liability can then arise even though others may have taken a different view, allowing considerable latitude to clinicians faced with a difficult decision where the competing rights of two individuals are concerned. The courts will also recognise that taking a decision of this nature in the course of day-to-day clinical practice is very different from taking a decision after several days of evidence and submissions in the Royal Courts of Justice. 

If a defendant has not conducted a proper balancing exercise (applying the Bolam test), the court will have to go on to consider what the defendant would have done if the exercise had been properly performed. If, on a balance of probabilities, the defendant would have disclosed, a potentially actionable breach will be made out. If the defendant would not have disclosed, the court will have to consider whether such a decision would have been negligent, in the sense that no responsible body of medical opinion would have supported it (applying Bolitho.)” 

Was the duty and standard of care breached? 

At [197] Yip J considered whether the duty of care was breached, such that the Claimant should have been told of genetic risk while she was pregnant. 

She considered in detail the evidence of a number of different professionals, some of whom considered that disclosure was the only reasonable option, and some of whom supported the decision taken not to disclose. Ultimately, Yip J found at [231] that there was no breach of duty: 

“In short, this was a difficult decision which required the exercise of judgment. The relevant guidelines for psychiatrists made it clear that confidentiality should not be breached unless the doctor was certain that this was in the public interest. The GMC guidelines supported breaching confidentiality to avert a risk of death or serious harm. There was room for reasonable disagreement as to how the judgment should be exercised. That is demonstrated by the lack of consensus in the medical opinion before me. The claimant has not demonstrated that the views of the defendants’ experts are illogical. I therefore conclude that the decision not to disclose was supported by a responsible body of medical opinion and cannot be considered to have amounted to a breach of the duty I have identified.” 

Furthermore, the judge noted that, although she had placed little weight on it, the Defendants were entitled to point out that the Claimant, upon finding out about the genetic risk, decided not to inform her pregnant sister. She commented at [232]: “It does seem to me that it would be unduly harsh to hold the second defendant liable in negligence for reaching the same decision as the claimant did in relation to her sister.” 

Causation 

Although the judge had found no breach of duty, she independently went on to consider the issue of causation i.e. whether, on a balance of probabilities, the claimant would have terminated her pregnancy if the genetic risk had been disclosed to her. 

The evidence before the judge established that, in the hypothetical scenario where the Claimant had been told about the genetic risk, she would have had to undergo testing and counselling incredibly quickly to establish whether she was carrying the genetic mutation, in order to have sufficient time to terminate the pregnancy. 

The judge found that it was unlikely that the Claimant would have acted so quickly. In particular, Yip J took account of how the Claimant behaved when her sister became pregnant noting at [245] that: “It appears inconsistent for the claimant to say that she would have reacted to being told during her pregnancy by immediately requesting testing, yet for her not to insist her pregnant sister be immediately informed so that she could be tested during pregnancy.” 

Overall, the judge found that, on the balance of probabilities, if the Claimant had found out about her father’s condition in October 2009, it is unlikely that she would have terminated her pregnancy, and therefore the Claimant also lost on the issue of causation. 

Comment 

This fascinating judgment raises a wide range of issues. It arguably represents a loss for all involved – the Claimant as she was unable to establish a breach of duty or causation – and the Defendants, as the court found that a duty of care did exist, albeit it was not breached. 

In an area of clinical judgment as contested as disclosure to non-patients, it will inevitably be difficult for Claimants to establish that the only responsible decision was to disclose. This may mitigate some of the fear amongst medical professionals that ABC opens up the floodgates to litigation. Furthermore, Yip J emphasised a number of times the fact that her decision was confined to the somewhat unusual factual situation of the present case, in which there was a close relationship between D2 and the Claimant which arose on the particular facts. Each case will require close consideration of those facts before any duty can arise. 

1COR members Philip Havers QC and Hannah Noyce acted for the Defendants and Lizanne Gumbel QC acted for the Claimant. They were not involved in the writing of this article.