Update: High Court rules on medical confidentiality in the context of hereditary disease

A High Court decision raises, in stark form, the potential dilemma for healthcare professionals around patient confidentiality and appropriate risk disclosure to relatives in cases where a patient’s genetic information may have relevance to family members.

The High Court has confirmed in ABC v St George’s Healthcare NHS Trust and Others that the NHS Trust owed the claimant, the daughter of their patient, a duty of care to inform her about her father’s condition (he suffered from Huntington’s disease, a neurodegenerative disorder of genetic origin). The scope of that duty extended to conducting a balancing exercise and to acting in accordance with its outcome. However, the High Court did not find that the duty had been breached and causation had not been established. Nor did it find that there had been a breach of her Article 8 rights under the European Convention on Human Rights (ECHR).

The outcome of this hearing will be of interest to healthcare professionals navigating patient confidentiality and disclosure to relatives of genetic information. The ruling highlights the fact that patient confidentiality is not absolute – but there must be very strong reasons to overrule it and this means undertaking a difficult balancing exercise. This decision has been eagerly awaited as the case involved important issues for the doctor-patient confidentiality rule.

Mrs Justice Yip’s decision spans 43 pages and as such, we highlight a few of the key issues that will be of interest to healthcare professionals and, in particular, whether a clinician should ever breach patient confidentiality in order to protect a third party. Is this ever acceptable?

Context: procedural history

In May 2015, the defendants sought to have the claim struck out as having no sustainable basis in law, and this was agreed by Mr Justice Nicol.

However, in 2017, the Court of Appeal overturned Mr Justice Nicol’s decision and took the view that the claim was “arguable”, and ordered that the matter should proceed to trial.

In November 2019 and January 2020, the High Court (Mrs Justice Yip) decided the case on the evidence.

Background

This unusual and tragic case concerned a claim brought against three South East NHS Trusts where the claimant contended that the defendants had breached a duty of care owed to her and/or acted contrary to her Article 8 rights under the ECHR in failing to alert her to the risk that she had inherited the gene for Huntington’s disease in time for her to terminate her pregnancy. The claimant claimed damages for the continuation of her pregnancy, psychiatric damages and consequential losses.

Huntington’s disease is a serious and progressive neurological condition which is ultimately fatal; children of a parent with this disease have a 50 per cent chance of developing it themselves. The genetic risk had been revealed to the defendants through the diagnosis of the claimant’s father, who declined to consent to disclosure of the information to the claimant and the defendants’ clinicians took the view that they should not override his confidentiality and inform his daughter of the diagnosis. You may recall, the father killed the claimant’s mother and was subject of a hospital order.

The defendants denied that, as a matter of law, they owed the claimant a duty of care – and even if such a duty was owed, they contended, on the facts of the case, that they did not breach that duty. Even if they had breached that duty, they argued the claimant would not establish causation such that she would have had a termination but for the breach.

Duty of care

Mrs Justice Yip took great care to give separate consideration to each defendant, namely: whether they owed a duty of care to the claimant – and if so, the nature and scope of the duty owed.

In doing so, the judge made it clear that:

“…the courts have been willing to recognise that a doctor or health authority may owe a duty of care to persons other than their primary patient but that such a duty is only capable of arising where there is a close proximal relationship between the claimant and defendant.”

It is of note that Mrs Justice Yip found no evidence to indicate that the claimant could have been alerted to genetic risk without breaching her father’s confidentiality.

The court’s conclusion

  • The second defendant, South West London and St George’s Mental Health NHS Trust, owed the claimant a duty of care to balance her interest in being informed of her genetic risk against her father’s interest and the public interest in maintaining confidentiality.
  • This duty arose on the particular facts of this case, which involved a close proximal relationship between the claimant and the second defendant and the foresight that she might suffer harm if not informed.
  • This case should not be read as imposing a duty on healthcare professionals to override patient confidentiality.

Mrs Justice Yip commented:

“The duty I have found is not a free-standing duty of disclosure nor is 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.”

And she further added:

“The legal duty is likely to arise only in limited factual circumstances where there is close proximity between the at-risk person and the medical professionals. Even where such a duty does arise, it seems to me that the circumstances in which it will give rise to a cause of action will be rare, for the following reasons:

i) The standard of care will be measured by reference to the professional guidelines. The guidelines do not mandate a particular outcome. Further, they take a conservative position. Non-disclosure is the default position and the bar for breaching confidentiality is relatively high.

ii) A decision supported by a responsible body of medical opinion will not be considered negligent even though others may not have reached the same decision.

iii) The courts will recognise the pressures of day-to-day clinical practice and will afford considerable latitude to clinicians taking difficult decisions in that context.”

  • Insufficient proximity between the first defendant and the claimant such as to justify the imposition of a duty of care.
  • As for the third defendant, (The Sussex Partnership NHS Foundation Trust) there was insufficient evidential basis to maintain a claim.
  • No actionable breach of duty on the part of the second defendant: the decision not to disclose was supported by a responsible body of medical opinion and was a matter of judgment open to the second defendant after balancing the competing interests. While accepting that the decision was difficult and nuanced – it was “…fair, just and reasonable”.
  • And as for the scope of the duty, the judge commented:

“The scope of the duty extends not only to conducting the necessary balancing exercise but also to acting in accordance with its outcome. It would be irrational to hold otherwise. If a doctor is under a duty to perform tests, there is no point in those tests being completed but no action being taken in response. The same is true of the balancing exercise.

Comment

Now that Mrs Justice Yip has decided the case on the evidence, we have a clearer picture of the legal duties and defences at play in cases involving genetic information which may have implications for other members of a patient’s family and managing the confidentiality dilemma.

But as Nigel Poole QC says: “The case is not authority for there being a duty on geneticists or others to trawl for near or distant relatives of a patient in order to give them advice. Clinicians are not expected to create a relationship of proximity with a non-patient. But where there is already a sufficiently proximal relationship then they ought to consider the balancing act described by Mrs Justice Yip, or a similar balancing of interests that might require to be addressed in different situations.”

The key message here is that each case will turn on its own facts. Given the progress being made with genetic and genomic medicine and the proliferation of genetic information about patients, it is increasingly likely that healthcare professionals will be faced with making similar decisions as in this case. However the decision in ABC provides healthcare professionals with the approach to be adopted when considering sharing a patient’s information with a relative without consent.

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