Legislation:
European Convention on Human Rights 1950 article 8.
Cases:
- ABC v St George’s Healthcare NHS Foundation Trust [2017] EWCA Civ 336; [2017] P.I.Q.R. P15 (CA (Civ Div))
- Caparo Industries Plc v Dickman [1990] 2 A.C. 605; Independent, February 16, 1990 (HL)
*P.N. 273 Although the question of whether liability may arise in negligence for the non-disclosure of genetic information to relatives has attracted a good deal of academic consideration,[1] the issue has only recently come to the attention of the English courts.[2] In the case of ABC v St George’s Healthcare NHS Trust, we now have the first English appellate decision considering this topic.
A brief history of the claim
The facts of the ABC case are unusual and undeniably tragic.[3] In 2007, ABC’s father shot and killed her mother. He was convicted of manslaughter, on the basis of diminished responsibility, and sentenced to a hospital order under the Mental Health Act 1983, s 37, with a restriction order under s 41 of the Act. The respective roles of the defendants in relation to the father’s subsequent care and treatment were as follows: he was detained in a clinic run by the second defendant (the South West London and St George’s Mental Health NHS Trust), where, whilst resident, he was seen by a social worker for whom the third defendant (Sussex Partnership NHS Foundation Trust) was responsible, and he was referred to the first defendant’s hospital (St George’s Hospital) in order that his disorder could be explored.[4]
In early 2009, it began to be suspected that Huntington’s disease might be the root cause of the father’s mental disorder, and this was subsequently confirmed by genetic testing in November of that year. Huntington’s disease (HD) is an inherited disorder which is caused by a faulty gene and leads to the progressive degeneration of nerve cells in the brain, which in turn leads to psychiatric, cognitive and physical movement disorders. The condition is an autosomal dominant disorder, which means that an individual who carries a copy of the gene will inherit the condition. A child with one parent with the *P.N. 274 gene stands a 50 per cent chance of inheriting the gene. Whilst drugs are available to treat some of the symptoms of the disease, no treatment is currently available to stave off its inexorable progress, which usually leads to the sufferer’s death within 10 to 30 years from the first manifestation of its symptoms.[5]
Although by August 2009, the father had told his brother of his presumed diagnosis, he did not tell his daughters, ABC and her two sisters that it was feared that he had HD.[6] At a multi-disciplinary meeting on 2 September 2009, the father’s care team considered whether his children ought to be informed, because of the implications for their own health and because it was considered that they “may have a right to know’. However, it was agreed to keep the diagnosis confidential. On the same day as this meeting, ABC told her father that she was pregnant.[7]The issue of disclosure to the children was reconsidered in late 2009, and early 2010. In particular, in December 2009, whilst the question of informing his family was being explored with the father, a social worker recorded that the father “does not want his daughters to know about it, especially the pregnant one until she gives birth some time in 2010′.[8]Similarly, in January 2010, a doctor recorded that the father did not wish his daughters to be informed of his condition because “he felt that they might get upset, kill themselves, or have an abortion’.[9] ABC gave birth to a daughter in April 2010, and was only (accidentally) informed of her father’s diagnosis in August 2010. Following genetic testing, she was diagnosed as having the HD gene in January 2013.[10] Since children are not tested for the HD gene until they are 18, it is not yet known whether her daughter has inherited the condition.[11]
ABC’s claim against the defendants falls into three parts. First, it is alleged that the defendant trusts owed a direct duty of care to ABC, on the basis that she was herself a patient. This was based on the fact that, during 2009, she participated in family therapy organised and facilitated by the defendants. The precise purpose and content of this therapy will evidently have to be explored at the trial of this matter, although it appears that this therapy had a therapeutic objective, to address the killing of ABC’s mother and her father’s role in this, and her relationship with her father, and his care plan in the future.[12] Second, it is claimed that, even if ABC was not to be regarded as having been a patient of the defendant trusts, a duty of care was owed to her on the basis of the tripartite test laid down in Caparo v Dickman.[13] In support of this claim, reliance was made upon professional guidance in relation to the issues of confidentiality and genetic information which imposed obligations upon health care professionals (HCPs) towards those who, although not a patient, had a “vital interest’ in genetic information in the HCPs’ possession,[14] it being suggested that these obligations provided a good foundation *P.N. 275 of the extension of the legal duty of care to those in ABC’s position.[15] Finally, it is alleged that the trusts had breached ABC’s rights under Art 8 of the European Convention on Human Rights. ABC’s claim includes a “wrongful birth’ claim:[16]she alleges that, had she been informed of her father’s diagnosis, she would have been tested and, if that had proved positive for Huntington’s, would have terminated the pregnancy. She was a single mother, and would have wished to prevent the risk of her being dependent upon her child, or dying, leaving her child an orphan, and the risk that her child would inherit the condition.
The Court of Appeal ruling
This was an appeal against Mr Justice Nichol’s decision striking out ABC’s claims on the basis that they disclosed no arguable cause of action.[17] The Court of Appeal was not therefore considering the full substance of the claimant’s case, but merely whether the claims were reasonably arguable. The Court of Appeal allowed the appeal, deciding that ABC had an arguable claim against the defendant trusts, quashing the order striking out the claim, and remitting the case to the High Court for trial. Although the Court of Appeal made comments in relation to the duty of care in negligence to third parties in respect of the non-disclosure of genetic information which may be seen as a positive development by those in favour of the adoption of a more relational, “joint account’ model so far as familial genetic information is concerned,[18] the key issues in relation to the merits of ABC’s claims, including whether a duty of care was owed to her by the defendants, remain to be resolved at the trial of the action. The judgment focuses principally upon the issue of whether it was arguable that it was fair, just and reasonable to impose upon the defendants a duty of care towards ABC, with the other two aspects of ABC’s claim being dealt with in a somewhat cursory manner,[19] although this may be because having allowed the appeal on part of the claim, the court felt that it was not necessary at this stage to descend to an examination of the particulars of the other claims.
The Caparo test and the duty of care
To establish that it was arguable that a duty of care was owed to ABC as a non-patient, the claimant had to satisfy the court that there was a reasonably arguable case that the tripartite test in Caparo v Dickman[20] was met. The first two parts of this test (that it was reasonably foreseeable that injury to ABC would arise from a failure to inform her of her father’s condition, and that there was sufficient proximity between the parties for a duty of care to arise) were conceded by the defendants. The dispute therefore focused upon the third limb of the test: whether it was fair, just and reasonable on the alleged facts to *P.N. 276 impose a duty of care on the defendants. Policy issues loom large when this part of the test is being considered, and leading counsel for the defendants advanced no less than nine reasons why no duty should be imposed. At first instance, Nichol J had found these to be persuasive, but the Court of Appeal was less impressed.
In relation to the competing interests involved in relation to the maintenance of the father’s desire for confidentiality in relation to the diagnosis of HD on the one hand, and disclosure of this information to ABC on the other, the defendants boldly argued that there was a public interest in maintaining confidentiality, but that ABC had no countervailing public interest in disclosure, merely a private interest. By contrast, it was suggested on behalf of the appellant that there were competing public and private interests on both sides, which had to be considered and balanced.[21] Whilst the Court of Appeal stressed that it has reached no final conclusions as to the merits of the appellant’s case on this issue, comments made by Irwin LJ in his judgment suggest that the defendant’s argument was not favourably regarded:
“I find it difficult to see how public confidence is necessarily improved if private law action is available to enforce only some of the professional obligations laid down in the relevant professional guidance….If and when a decision to override patient confidentiality is taken in line with the relevant professional guidance, it seems to me at least arguable that public confidence will be diminished rather than enhanced by the absence of the duty contended for.’
The court acknowledged that common law developments, culminating in Montgomery v Lanarkshire Health Board,[22] demonstrated a “strong trend in recent authority in the field of clinical negligence, to emphasise the autonomy of the patient’,[23] commenting that, in the light of this more autonomy-focused approach, it was at least arguable that “it is irrational to emphasise the need to inform patients so that they can take their own decisions about treatment, whilst at the same time depriving of any legal remedy identified individuals in respect of whom a relevant doctor has specific information which should cause them to become patients’.[24]
The defendants also voiced a number of policy concerns about the difficulties that would be imposed upon doctors if the duty of care were to be extended to third parties in ABC’s position: arguing that it might encourage doctors to breach confidence where they would not otherwise have done so; that doctors would face difficulties in relation to conflicting duties (to the existing patient and the third party); that the doctor/patient relationship might be adversely affected, leading to patients being less candid with their doctors; and that it might lead to doctors acting in a self-protective manner to avoid litigation, putting pressure on patients to agree to disclosure.[25] It is indubitably the case that conflicts do arise in relation to confidential information which affect third parties -the cases of W v Egdell[26] and Tarasoff v Regents of the University of California[27] illustrate *P.N. 277 that – but the balancing of risks and interests is part and parcel of clinical practice, and the Court of Appeal accepted that it was properly arguable that the imposition of a legal duty would protect the interests of both parties and ensure that these interests are properly balanced by the clinician.[28] Whilst the concerns raised regarding the possible effects of the doctor-patient relationship were recognised by the court, it was noted that, in certain circumstances professional guidance already imposed a professional duty to disclose information to third parties, and that patient concern about the disclosure of confidential information was likely to be focused upon the fact of disclosure, not the basis for it (namely whether it was made by virtue of professional guidance or because a legal duty was imposed).[29] Lord Justice Irwin was apparently less than sympathetic to the argument that the extension of the duty of care would lead to the practice of “defensive medicine’, observing that: “it does not seem to me obvious that the public interest or the rigour of the common law is served by the maintenance of an incentive to act self-protectively only in one direction’.[30] The courts these days, it appears, are less deferential to the medical profession than they were in the past.
In relation to the argument advanced that to impose a duty upon HCPs to consider whether to disclose information to third parties would place an undue burden upon doctors, the court recognised that the concern underlying this submission was essentially that the imposition of a duty in such circumstances would open the floodgates to liability in a wide variety of cases, including cases where an individual refuses to disclose a sexually transmitted disease to past or current sexual partners.[31] Although the “floodgates’ concern was recognised, Irwin LJ recognised 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’,[32] and were already required by their professional guidance to consider whether disclosure of such information should be made to family members.[33] Limiting the duty of care to geneticists may be seen as a way of controlling the numbers of claims which might arise in respect of the non-disclosure of medical information to third parties, although it remains to be seen whether this limitation will be regarded as being practicable once the case has been fully litigated.
The formulation of the duty of care: robust and narrow duties
Although the situation in ABC was not one which the English appellate courts had previously tackled, similar issues have been considered in other common law jurisdictions. In relation to the duty of care in relation to the disclosure of medical information which identifies risks to the health of third parties, two approaches may be discerned in relation to third party claims which have succeeded: a “weak form’ of the duty of care, which may be satisfied by counselling and advising the patient to warn a non-patient about the possibility of their having inherited a genetic condition, so that they may then consider *P.N. 278 whether to be tested and, in the case of women of child-bearing age, take steps to prevent the condition being transmitted to their offspring; and a more “robust’ duty of care, requiring the HCP to take direct steps in relation to the non-patient (for example, by suggesting that they might be tested).[34] The former approach was adopted in the American case of Pate v Threikel,[35] where the duty was limited to requiring the HCP to warn the patient that her children should seek medical care. The broad approach has generally not found favour with the courts, although it was adopted in the case of Safer v Estate of Pack,[36]where a duty to warn genetic relatives was imposed upon the HCPs. During the hearing of ABC’s appeal, the claimant’s pleadings were re-amended to clarify their allegations in relation to the duty of care, and it appears that, at this stage, the claim is that the weak form of the duty of care applied to the defendants. Experience in common law jurisdictions suggests that this approach is more likely to be successful than the robust stance.
Conclusion
The claims made in this case had not previously been ventilated in the Court of Appeal, and it is not possible to examine all of the issues raised by the case within the ambit of a relatively brief case note. In particular, I have not examined the human rights aspect of ABC’s claim, which was dealt with only very briefly by the Court of Appeal and surely merits much closer and rigorous examination at trial. The outcome of the decision is that ABC’s claim lives to fight another day, and has been remitted to the High Court for trial. If the case does not settle, its novelty and the significance of the issues raised in relation to the disclosure of genetic information to third parties means it may well find its way to an appellate court again in the future. For the moment, although comments made by the Court of Appeal offer some hope to those who argue in favour of the imposition of a duty of care in respect of the disclosure of genetic information to family members, the case does not impose such a duty upon HCPs.
Tracey Elliott
Lecturer in Health Care Law, Leicester Law School, University of Leicester;
Academic Consultant, Chambers of Phillip Havers QC, 1 Crown Office Row
P.N. 2017, 33(4), 273-278
Footnotes:
1. See (eg) B McGiver “Tortious liability for (selected) genetic harm: exploring the arguments’ (2002) 10 Torts Law Journal 1-23; R Mulheron Medical Negligence: Non-Patient and Third Party Claims (Routledge, London, 2010) at ch 4; R Gilbar “The passive patient and disclosure of genetic information: can English tort law protect the relatives’ right to know?’ (2016) 30 International Journal of Law, Policy & the Family 79-104.
2. In the ABC case [2015] EWHC 1394 and Smith v University of Leicester NHS Trust [2016] EWHC 817 (QB). In Smith, the claim was struck out at first instance and an appeal was not pursued.
3. [2017] EWCA Civ 336, at [4].
4. Ibid.
5. Mayo Clinic “Huntington’s Disease“, Huntington’s Disease Association (both websites last accessed 25 September 2017).
6. [2017] EWCA Civ 336, at [6].
7. [2017] EWCA Civ 336, at [7]-[8].
8. [2017] EWCA Civ 336, at [10].
9. [2017] EWCA Civ 336, at [11].
10. [2017] EWCA Civ 336, at [14].
11. Huntington’s Disease Association (website last accessed 25 September 2017).
12. [2017] EWCA Civ 336, at [16]-[17].
13. [1990] 2 AC 605 (HL).
14. Royal College of Physicians, 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 (April 2006); General Medical Council, Confidentiality (2004, updated 2009).
15. [2017] EWCA Civ 336, at [21].
16. [2017] EWCA Civ 336, at [15].
17. [2015] EWHC 1394 (QB).
18. See (eg) R Gilbar “Patient autonomy and relatives’ right to know genetic information’ (2007) 26 Medicine and Law 677-98; C Foster, J Herring and M Boyd “Testing the limits of the “joint account’ model of genetic information: a legal thought experiment’ (2015) 41(5) Journal of Medical Ethics 379-82; R Gilbar and C Foster, “Doctors’ liability to the patient’s relatives in genetic medicine: ABC v St George’s Healthcare NHS Trust [2015] EWHC 1394 (QB)’ (2015) 24 Medical Law Review 112-23.
19. At paras [64] and [65] of the judgment.
20. [1990] 2 AC 605 (HL).
21. [2017] EWCA Civ 336, at [26].
22. [2015] AC 1430.
23. [2017] EWCA Civ 336, at [28].
24. Ibid.
25. [2017] EWCA Civ 336, at [30]-[36].
26. [1990] Ch 359.
27. [1976] 551 P.2d 334 (Supreme Court of California). This case was considered by the Court of Appeal at [50]-[56] and was seen (at [56]) as holding “parallels with the instant case’.
28. [2017] EWCA Civ 336, at [32].
29. [2017] EWCA Civ 336, at [34].
30. [2017] EWCA Civ 336, at [36].
31. [2017] EWCA Civ 336, at [42].
32. [2017] EWCA Civ 336, at [40].
33. Ibid.
34. R Mulheron (supra n 1) at 125-31.
35. 661 So 2d. (Supreme Court of Florida). This case is referred to in the Court of Appeal’s judgment at [58].
36. 291 N.J.Sup 619 (New Jersey Supreme Court). The case is discussed at [57]-[60] of the Court of Appeal’s judgment.
