INSIGHTS: Disclosure of confidential genetic information to relatives

August 29, 2017

Author

Joanne Hayes
Senior Associate

The complexities and difficulties revisited — appeal from the interlocutory decision of ABC v St George’s Heath Care NHS Trust

This article considers the health providers’ duty of care in disclosing genetic information to a patient’s relatives when consent is withheld.

In an earlier article in relation to the decision of ABC v St George’s Heath Care NHS Trust,1 we highlighted the difficulties facing health service providers in disclosing a patient’s genetic information to a genetic relative when consent is withheld, particularly where the genetic condition potentially poses a significant threat to the life, health or safety of that relative.2 Nicol J found that no duty of care was owed by the care team to disclose to a pregnant daughter her father’s genetic disease, namely Huntington’s disease.3 The claim was struck out at common law on the basis that there was no reasonably arguable duty of care owed.4

The Court of Appeal recently remitted the case for trial after finding the claimant’s case to be arguable. The decision of ABC v St George’s Healthcare NHS Trust5 provides an interesting commentary on the ambit of the duty of care in a changing medicolegal landscape, drawing a distinction between conventional and genomic medicine, and if any extension of the duty of care is necessary, whether this is a matter for parliament and not the courts.6

The facts revisited

Genetic testing in November 2009 had confirmed that the appellant’s father had Huntington’s disease. He was detained at the time as a result of a conviction of manslaughter (he had shot and killed the appellant’s mother) and opposed his daughters being informed of his disease.7 The basis for his objection was that he did “not want his daughters to know about it, especially the pregnant one until she gives birth some time in 2010” and “he felt they might get upset, kill themselves, or have an abortion”.8

The appellant gave birth in April 2010; and in August 2010, was accidentally informed about her father’s diagnosis. The appellant herself was diagnosed with Huntington’s disease in January 2013.9

The claim

The appellant alleged that a duty of care arose by virtue of the particular circumstances of her case, stating that it was critical that she be informed of her father’s diagnosis in light of her pregnancy.10 It was argued that, as a single mother, had she been informed of her father’s diagnosis, she would have sought to be tested. If she had been diagnosed with Huntington’s disease, she would have terminated the pregnancy.11

In 2009, the appellant and her sisters had taken part in family therapy organised by the respondents and it was submitted that, by virtue of the attendance at the clinic, her attendance was in the capacity as a patient of the respondents and as such, there existed a relationship giving rise to a duty of care.12 The case was also pleaded in the alternative, namely that absent a special relationship between the appellant and the respondents, there was an assumption of a duty of care owed to her.13

The appellant alleged that as a consequence of the duty, the respondents should have provided her with information as to her father’s diagnosis “in a timely manner when it was known, or ought to have been known, that the Claimant was pregnant”.14

It was also alleged that once that information had been provided, she should had been given the opportunity for “urgent diagnosis and testing” of her own genetic condition with further advice, support and termination of the pregnancy if that was what she decided.15

Imposition of a legal duty: fair, just and reasonable?

The appellant submitted that the professional guidance,16 including the General Medical Council’s (GMC) 2009 guidance on confidentiality (the Guidance):

… makes it clear there are professional obligations (to employ a neutral term) towards those who, although not in existing doctor/patient relationships with a clinician, have a vital interest in genetic information which the clinician has obtained[,]17 and that these obligations provided a foundation for an extension of the legal duty of care to individuals affected in that manner. Further, it was argued that this would fall within the application of the tripartite test set out in Caparo Industries plc v Dickman.18

The respondents also placed reliance on the Guidance, stating that it does not impose a duty on a clinician and simply provided that:

…disclosure may be justified in certain circumstances, and it imposes a duty to conduct a balancing exercise in order to decide whether or not such circumstances arise in each case…as long as he had carried out the requisite balancing exercise, that doctor could not be disciplined or otherwise criticised for failing to disclose on the basis of the Guidance… In other words the Guidance operates as a shield not a sword.19

The court did not accept this submission, stating that:

…if the clinician conducts the requisite balancing exercise, and concludes that it falls in favour of disclosure then a professional obligation arises. The question is whether a breach of that obligation is actionable.20

For the purposes of the claim, the respondents agreed that the first two limbs of the tripartite test could be taken to be established namely that:21

  • The claimant would be able to establish foreseeability of injury arising from a failure to inform her of her father’s genetic disease.
  • There was sufficient proximity between the appellant and the respondents for a duty of care to arise.

The court noted that the argument arose in relation to the third limb of the test, namely:

  • Whether it is “arguably fair, just and reasonable to impose on the [respondents] a duty of care [to the appellant] on the facts alleged”.

The respondents submitted that there was no precedent for an extension of the duty in the circumstances of the case.22 The professional duty, sometimes, to override patient confidentiality did not translate into a legal duty and it was submitted that it would not be fair, just or reasonable to impose a duty.23

The court had regard to the nine policy reasons advanced by the respondents as to why it would not be fair, just or reasonable to impose such a duty (and which Nicol J had found to be persuasive).24

Policy considerations against imposition of a legal duty

Public interest in preserving confidence: not a public interest in disclosure but private interest of the appellant

The court considered that there must be public confidence in the way doctors approach their obligations to patients; stating that where professional guidance allows, and the circumstances demand the breach of patient confidentiality, it is not necessarily the case that public confidence would be increased because although the patient could sue, the person in need of the relevant information could not. The court considered that it seemed arguable that public confidence would be diminished rather than enhanced by the absence of the duty and it might logically represent an incentive to a clinician to play it safe, rather than take the difficult step of overriding patient confidentiality.25 It was arguably irrational to emphasise patient autonomy while depriving identified individuals, in respect of whom a doctor has specified information, any legal remedy.26

The creation of conflicting duties

The court considered that the second policy reason was a duplication of the third, namely, that if such a duty existed, doctors would be liable to not only be sued by their patient if they disclosed confidential information but also liable to be sued by a third party if they failed to disclose certain information.27 The court acknowledged the difficulties that would face clinicians, though ultimately considered that the imposition of such a duty would serve to protect the interests of both parties and ensure that a proper balancing exercise was performed by the clinician.28

Imposition of the duty would undermine trust and confidence in the doctor/patient relationship—patients may be less candid with their doctors 29

Acknowledging that while this could occur, the court questioned the degree to which such loss of confidence may be affected by the existence of a common law duty of care to a third party as distinct from any existing professional duty to disclose.30 A patient would be unlikely to be concerned about the legal basis for the disclosure, but rather, would likely be concerned by the fact that it could occur. The court noted further that any claimed legal liability to a “third party” would, in any event, have to satisfy the Bolam v Friern Barnet Hospital Management Committee31 (Bolam) test, with the qualification that a professional decision must be reasonable.32

Placing pressure on patients to agree to disclosure to avoid the risk of being sued by third parties

To the extent that this may be true in some instances, the court stated that it was not obvious that the public interest or rigour of the public law would be served by the maintenance of an incentive to act “self-protectively only in one direction”.33

Imparting information and possible psychiatric harm

The further two policy reasons were linked by the defendants in their submissions as follows:34

  • A doctor is unable to assess whether a patient wants to receive medical information without effectively imparting that information.
  • It is possible that a third party may suffer psychiatric harm if he or she is told the information in question and it may be difficult for a doctor to explore this when the third party is not or may not be their patient.

The court considered that these difficulties are already faced by clinicians and arise irrespective of whether there is legal liability towards a third party.35

It would be burdensome and distracting to place on doctors a duty to consider what information needs to be disclosed to third parties 36

The court did not consider there to be much merit to this policy reason, noting that the inherent nature of genetic medicine means that “geneticists frequently acquire definite, reliable and critical facts of clinical significance about their patients’ relatives”.37 Reference was made to the passage from the Joint Committee on Medical Genetics’s report which states that:

… the traditional medical approach which focuses on the individual patient to the exclusion of others may be difficult to apply to the use of genetic information.

… providing the tested person with a right of veto over such risk information in all situations may be legally and ethically unsound.38

Commenting on the “floodgates” scenario raised by the defendants, the court attempted to distinguish between the field of genetics rather than the broad range of other situations where medical knowledge is specific to the patient.39 It was noted that in the field of genetics, the clinician acquires “definite, reliable and critical medical information about a third party, often meaning that the third party should become a patient”.40

Extending the duty of care in this way is contrary to the incremental way in which the law of negligence ought to progress 41

In relation to this argument, the court noted that neither party submitted that there was any previous case in the English jurisdiction which had considered the obligation to disclose information arising from the practice of clinical genetics, nor has professional guidance been considered in the context of common law liability in any English case. Distinguishing the factual matrix from the facts of other cases, the court considered that the question was “whether the difficulty of the geneticist already faced with such conflicting considerations identified in the relevant professional guidance requires to be protected from such a common law duty of care”.42

The court was referred to a number of foreign cases but it did not address more than two, both from the United States, noting that neither case represented an exact parallel, although one concerned clinical genetics. The cases included the Tarasoff v Regents of the University of California43 decision, whereby the Supreme Court of California held that a therapist had a duty of care to an identifiable third party to warn of a foresee- able risk of harm. In relation to this decision, the court was of the view that what was distinct was the fact that in the case of clinical genetics, the obligation to disclose confidential information usually arises from a specific quantifiable risk, stating that “indeed it is one of the clinical functions of the geneticist to calculate the risk.

As the science and medical applications of genetics progress, this will become ever more possible”.44 The court drew specific parallels from the decision of Safer v Estate of Pack,45 where the New Jersey Superior Court stated:

We see no impediment, legal or otherwise, to recognising a physician’s duty to warn those known to be at risk of avoidable harm from a genetically transmissible condition.

Although an overly broad and general application of the physician’s duty to warn might lead to confusion, conflict or unfairness… we are confident that the duty to warn of avertable risk from genetic causes, by definition a matter of familial concern, is sufficiently narrow to serve the interests of justice.46

Despite this decision ultimately being set aside by the legislature, the court stated that this outcome did not affect the quality of reasoning in the decision.47 The court also rejected the proposition made on behalf of the respondents that it should be for parliament, not the courts, to extend the duty of care in the way proposed, stating that:

The ambit and content of the duty of care … has long been a matter of the common law, developed by judicial decision. If that were to cease to be so, the law would ossify in this area.48

Comment

Given the facts involved in the case, one does query as to why the father’s care team adhered so stringently to his wishes, noting that he had committed manslaughter and his mental capacity was called into question. The decision to not disclose the genetic information has been detrimental to his family and his daughter in particular.

Clinicians in possession of genetic information regarding relatives of a patient need to be given guidance and reassurance in terms of their decision-making. The decision of the trial court will have a number of ramifications for patients and practitioners alike and it remains to be seen what approach Australian courts will adopt in relation to any extension of the common law duty of care in respect of the disclosure of genetic information.

With the Australian position in relation to the extension of the duty of care, including the statutory test set out in the Health Privacy Principles and guidelines in place in all Australian states and territories,49 it is important to note that medical practitioners should ensure that they are familiar with the framework set out in the relevant guidelines and privacy principles and consult their medical defence organisation for advice in the event of uncertainty regarding the disclosure of confidential genetic information.

This article was first published in the Lexis Nexis Australian Health Law Bulletin, August 2017.

Contact Senior Associate Joanne Hayes for more information.

Footnotes

1. ABC v St George’s Heath Care NHS Trust [2015] All ER (D) 172 (May); (2015) 145 BMLR 154; [2015] EWHC 1394 (QB).
2. J Hayes and A Saxton “ABC v St George’s Health Care NHS Trust: disclosure of genetic information to a patient’s genetic relatives absent consent” (2015) 23(8) Australian Health Law Bulletin 152.
3. For a full discussion of the facts and the strike out ruling, see above n 2.
4. The claim formulated under the Human Rights Act 1998 (UK) was also struck out.
5. ABC v St George’s Healthcare NHS Trust [2017] EWCA Civ 336 — Irwin LJ writing the judgment, with Underhill and Gloster LJJ concurring.
6. Above n 5, at [61].
7. Above n 5, at [10].
8. Above n 5, at [10] and [11].
9. Above n 5, at [12] and [14].
10. Above n 5, at [15].
11. The claim therefore included a “wrongful birth” claim in respect of the child.
12. Above n 5, at [17].
13. Above n 5, at [17].
14. Above n 5, at [18].
15. Above n 5, at [18].
16. The appellant relied on guidance from: Royal College of Physicians, Royal College of Pathologists and British Society of Human Genetics Consent and Confidentiality in Genetic Practice: Guidance on Genetic Testing and Sharing Genetic Information (April 2006) — which provided guidance where consent to release information had been refused, stipulating that the rule of confidentiality is not absolute. She also relied on the GMC 2009 report on confidentiality.
17. Above n 5, at [21].
18. Caparo Industries plc v Dickman [1990] 2 AC 605; (1990) 1 ACSR 636; [1990] 1 All ER 568. According to the test in this case, a claimant must prove three things in order to establish a duty of care. First, was the injury/loss to the claimant reasonably foreseeable? Second, was there a sufficient proximity between the parties for a duty of care to arise? And third, is it fair, just and reasonable to impose a duty of care in the circumstances?
19. Above n 5, at [22].
20. Above n 5, at [23].
21. Above n 5, at [24].
22. Above n 5, at [25].
23. Above n 5, at [25].
24. Above n 5, at [25].
25. Above n 5, at [26].
26. Above n 5, at [28].
27. Above n 5, at [31].
28. Above n 5, at [32].
29. Above n 5, at [33].
30. Above n 5, at [34].
31. Bolam v Friern Hospital Management Committee (1957) 1 BMLR 1; [1957] 2 All ER 118; [1957] 1 WLR 582.
32. Above n 5, at [35]. Under the Bolam test, a plaintiff seeking to prove medical negligence needs to show that there was a duty of care between the doctor/patient, and that the act or omission of the doctor breached the duty of care.
33. Above n 5, at [36].
34. Above n 5, at [37].
35. Above n 5, at [39].
36. Above n 5, at [40].
37. Above n 5, at [40].
38. Above n 5, at [40]; passage taken from Joint Committee on Medical Genetics Consent and Confidentiality in Clinical Genetic Practice: Guidance on Genetic Testing and Sharing Genetic Information (September 2011) 1.
39. Above n 5, at [42].
40. Above n 5, at [43].
41. Above n 5, at [46].
42. Above n 5, at [48].
43. Tarasoff v Regents of the University of California 551 P 2d 334 (1976).
44. Above n 5, at [56].
45. Safer v Estate of Pack 291 NJ Sup 619 (1996).
46. Above n 5, at [59].
47. Above n 5, at [60].
48. Above n 5, at [62].
49. See discussion in above n 2.