Will genetically-informed medicine upend medical confidentiality?
17 May 2017
ABC v St George’s Healthcare NHS Trust and Others  EWCA Civ 336 – read judgment
All the advocates in this case are from 1 Crown Office Row. Elizabeth-Anne Gumbel QC, Henry Witcomb QC and Jim Duffy for the Appellant, and Philip Havers QC and Hannah Noyce for the Respondents. None of them were involved in the writing of this post.
In a fascinating twist to the drama of futuristic diagnosis, the Court of Appeal has allowed an argument that doctors treating a Huntington’s patient should have imparted information about his diagnosis to his pregnant daughter to go to trial.
The background to this case is outlined in my earlier post on Nicol J’s ruling in the court below. A patient with an inherited fatal disease asked his doctors not to disclose information to his daughter. The daughter came upon this information accidentally, shortly after the birth of her child, and found, after a genetic test, that she suffered from this condition as well, which has a 50% chance of appearing in the next generation. Had she known this, she would have sought a termination of the pregnancy. She claimed that the doctors were liable to her in damages for the direct effect on her health and welfare.
A claim for “wrongful birth” is well established in law; no claim was made on behalf of the child, who was too young to be tested for the condition. The twist is the duty of secrecy between doctor and patient, which has held very well for the past two centuries. Short of confessions pertaining to homicide or information regarding contagious diseases, the dialogue behind the consulting door should end there.
The problem is that the typical medical relationship only pertains to the pathology of the individual patient. Now that tests are available that make every single one of us a walking diagnosis not only for our own offspring but those of our siblings and their offspring, the one-to-one scenario collapses, along with the limited class of people to whom a doctor owes a duty of care. The pregnant daughter who came across the information about her father’s condition was not the defendant doctor’s patient. In pre-genetic days, that meant there was no duty of care relationship between her father’s doctors and her. But the certainty of hereditability brings her into that circle.
As the appellant argued in this case, individuals in her position
have a vital interest in genetic information which the clinician has obtained. […] these obligations are a good foundation for an extension of the legal duty of care to individuals affected in this way, well within the application of the familiar tripartite test laid down in Caparo v Dickman  AC 605.
In this appeal from Nicol J’s striking out of her claim against the respondent NHS trusts, the appellant contended that it was arguably fair, just and reasonable to impose on clinicians treating a patient with Huntington’s disease a duty of care to disclose his diagnosis to his daughter, given that the condition was inherited. The appellant relied on clinical guidance entitled “Consent and Confidentiality in Genetic Practice, Guidance on Genetic Testing and Sharing Genetic Information“. She submitted that the guidance made it clear that there were professional obligations towards those who, although not in an existing doctor/patient relationship with a clinician, had a vital interest in genetic information which the clinician had obtained. She argued that those obligations were a good foundation for an extension of the legal duty of care to individuals affected in that way.
The Court of Appeal agreed with her and reinstated the claim, which will now go to trial for a final decision on whether this duty exists in law.
Reasoning behind the Court’s decision
On the confidentiality issue, Irwin LJ observed that professional guidance enjoined a clinician to consider breaching patient confidentiality if the circumstances demanded it. So it was not necessarily the case that public confidence was increased in the process because the patient could sue but the person who needed the relevant information could not. Certainly a difficult choice faced clinicians in this kind of situation. But that difficulty already arose, and was exemplified by the professional guidance. The appellant’s argument was that balancing risks was an inherent part of clinical practice, and the imposition of the legal duty that she advanced would serve to protect the interests of both parties, and ensure that a proper balancing exercise was performed. That was a properly arguable position, and should be allowed to proceed.
As to the defendants’ argument that a duty to disclose information to third parties would undermine trust and confidence, again, this question was clearly arguable. It was possible that confidence in the doctor/patient relationship could be reduced if the patient was aware that confidentiality might be breached. However, the Court of Appeal questioned the degree to which such loss of confidence might be affected by the existence of a common law duty of care to the third party, as opposed to the professional duty to disclose which already existed. Furthermore, it was not self-evident that the existence of a legal duty to the third party might cause confidentiality to be overridden more often.
Then there was the “floodgates” scenario, in other words that the problem in the instant case could arise in a variety of medical scenarios aside from those involving genetic conditions. Irwin LJ commented that there was an important distinction between the situation of a geneticist and all the other examples given by the respondents. However problematic, and whatever the implications for third parties, the clinician usually only had knowledge of medical facts about the existing patient. It was only in the field of genetics that the clinician acquired definite, reliable and critical medical information about a third party, often meaning that the third party should become a patient.
As will already be clear from the professional guidance to which I have referred, and indeed from the inherent nature of genetic medicine, geneticists frequently acquire definite, reliable and critical facts of clinical significance about their patients’ relatives. Included in the material before the Court as part of the guidance from the Joint Committee on Medical Genetics appears the following passage:
“Fundamentals of clinical genetic practice
Whilst genetic information is relevant to an individual, as noted, it may also be relevant to that person’s family because much genetic information will be common to both. Indeed, genetic testing may only be requested because of wider knowledge about a condition within a family. 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. For example, testing one person can reveal information about the chances of a condition occurring in their close relatives and providing the tested person with a right of veto over such risk information in all situations may be legally and ethically unsound. At the same time, respecting confidential information is an important aspect of clinical practice and is vital in securing public trust and confidence in healthcare.”
This detailed and conscientious decision casts some welcome light over the interface between conventional and genomic medicine. One of the arguments of the hospital which was upheld below was that it should be for Parliament, not the courts, to extend a doctor’s duty of care in the way contended for by the claimant. But as Irwin LJ pointed out,
The ambit and content of the duty of care in such cases has long been a matter of common law, developed by judicial decision. If that were to cease to be so, the law would ossify in this area.If it were otherwise, the law would have ossified in that area.
It had not done so, as demonstrated by JD v East Berkshire Community Health NHS Trust  UKHL 23 and Montgomery v Lanarkshire Health Board  UKSC 11.
The Court acknowledged that the “floodgates” concern was a valid one. It might be that the distinction applying to genetic cases might, on close consideration, be insufficiently robust to sequestrate genetic cases from a broad range of other situations. But the situation has to be approached in terms of conventional medicine on the one hand, and the availability of diagnosis based on genetic information on the other. They present such starkly differing information – the first relating to the one individual, the other opening up a cascade of information about the patient’s family, parents, offspring and future generations – that it is possible to draw a bright line between them. As noted above, there was an important distinction between the situation of a geneticist and other clinicians, namely that the geneticist acquires critical medical information about a third party.
It may appear on the face of it that the facts of this case are rare. But, as the Court points out, this dilemma will arise whenever a clinician is presented with a genetically transmissible condition.
He or she often comes to know of a health problem already present, or potentially present, in the third party, and which means the third party requires advice and, in conditions other than Huntington’s Disease, may require treatment, potentially life saving in its effect. One example would be diagnosis of a strong genetic disposition to breast cancer. In such circumstances the third party is not a patient, but should become a patient.
The established exceptions to the confidentiality rule to which I referred earlier, involving risk of violence or infection to others, have already required a nuanced approach to the duty owed to individual patients. But diagnosis based on genetics is a new exception to the rule which should not be seen as merely incremental. The case law on confidentiality vis a vis potential crime or contagion involves risks which are unpredictable. Perhaps there will be no victim, and warnings are therefore unnecessary. But in the case of clinical genetics, the obligation to inform third parties will, in Irwin LJ’s words,
usually arise from a specific quantifiable risk. 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.
Genes, to borrow Richard Dawkins’ coinage, are selfish. They don’t “care” about the individual body they inhabit; their “interest” is to make it through the bottleneck of sex into the next generation. That is why genetic medicine represents such a revolution in medical thinking. Our understanding of the information in the genetic code blurs the line between the individual and those related to him or her. Attention to genetic information means attention to those who have passed it on, those who harbour it, and those who stand to inherit it. This is a complicated future for clinicians, but not one from which the law, in its allocation of duties and obligations, should shrink.
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“Short of confessions pertaining to homicide or information regarding contagious diseases, the dialogue behind the consulting door should end there.”
This statement is incomplete. Having worked as an expert witness, I have direct experience of courts obtaining complete medical records despite the patients objections.
Slippery slope, as patient/doctor confidentiality is being constantly eroded, and individual freedoms lost.
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