Medical privacy

Do clinicians treating a patient with Huntington’s Disease have a duty to disclose the diagnosis to the patient’s daughters? Arguably so, says the Court of Appeal in ABC v St George’s Healthcare NHS Foundation Trust (2017) EWCA Civ 336.

Huntington’s Disease is inherited. The child of a parent with the disease has a 50 per cent chance of developing the condition.

In the ABC case the Claimant’s father was diagnosed with the condition.  He told his brother.  He did not inform the Claimant or either of her sisters.

Those concerned with the father’s care considered whether they should override his patient confidentiality and inform his daughters of the diagnosis, because of the implications for them. The father’s wish was that the diagnosis should be “kept confidential” so that his daughters are not additionally distressed. The care team agreed to keep this confidential.

The Claimant having informed her father that she was pregnant, those responsible for the father’s care considered whether they should inform his daughters of the diagnosis and in particular whether they might choose themselves to undergo a predictive test for Huntington’s Disease. However, the father remained opposed to that. The question of informing his family was again explored with the father. A social worker recorded that he “does not want his daughters to know about it, especially the pregnant one until she gives birth some time in 2010”.  Following further discussion with the father, it was once more recorded that the father’s wish was that his daughters should not be informed of the diagnosis “as he felt they might get upset, kill themselves, or have an abortion”.

The Claimant gave birth to a daughter.   In due course the Claimant was herself diagnosed as suffering from Huntington’s Disease. 

The Claimant alleged that the particular circumstances of her case meant that the Defendants owed her a duty of care. She says it was critical that she should be informed of her father’s diagnosis, firstly presumed and subsequently confirmed, in the light of her pregnancy. This was her first and only child. It was all along known that she would be a single mother with sole responsibility for the upbringing of the child. If informed of her father’s diagnosis she would have sought to be tested for Huntington’s Disease. If her own diagnosis was confirmed, she would have terminated the pregnancy rather than run the risk that her child might in due course be dependent on a seriously ill single parent or become an orphan, and the risk that in due course her child might inherit the disease. Her diagnosis would have precluded any subsequent pregnancy. The claim therefore included a “wrongful birth” claim in respect of the child. The child had an accepted risk of 50 per cent of contracting the disease, but it was not yet possible to reach a diagnosis in her case, one way or another.

The basis of the claimed duty of care was pleaded broadly. It was said that the Defendants knew at all relevant times the Claimant was a daughter of her father, knew of the 50 per cent risk to her, and knew that such a diagnosis would have “a direct effect on the health, welfare and life of the Claimant”. The facts gave rise to a special relationship between the Defendants and the Claimant.  As a consequence of the duty of care it was said that the Defendants should have provided the information as to the father’s diagnosis “in a timely manner when it was known, or ought to have been known, that the Claimant was pregnant” and that following the provision of information, the Claimant should have been given the opportunity for “urgent diagnosis and testing” of her own condition, with further advice, support and termination of the pregnancy, if desired. The Claimant also relied on the guidance given by the Royal College of Physicians, the Royal College of Pathologists and the British Society of Human Genetics entitled “Consent and Confidentiality in Genetic Practice, Guidance on Genetic Testing and Sharing Genetic Information“.   The Claimant submitted that the professional 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. The Claimant submitted that these obligations are a good foundation for an extension of the legal duty of care to individuals affected in this way.

The issue was whether in the context of genetic medicine it was arguably fair, just and reasonable to impose on the Defendants a duty of care towards the Claimant on the facts alleged. The Court of Appeal on a strike out application did not, in advance of expert evidence, find persuasive the policy reasons advanced on behalf of the Defendants as to why that was not arguably so.  Irwin LJ observed, at paragraph 43, that it is only in the field of genetics that the clinician acquires definite, reliable and critical information about a third party, often meaning that the third party should become a patient.  He continued:-

“44.    Although parallel duties and difficulties of disclosure arise in other areas of clinical practice, usually to do with risks posed to others by the condition of the existing patient (see below), the clinical geneticist is in a different position. 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. Moreover, in many of the other scenarios envisaged, the practicalities of addressing the implications preclude effective remedy. Some former sexual partners may be known, but they do not constitute a closed class of individuals whose risk is defined by the genetic link to the patient, and who, for the most part, will be contactable.

  1. I accept the difficulty presented by the “floodgates” concern. This argument would have to be considered very carefully, particularly given the principle that the common law of negligence should advance by incremental steps. It may be that the distinction I have tentatively suggested as applying to genetic cases might on close consideration be thought insufficiently robust to sequestrate genetic cases from a broad range of other situations. However, it does not seem to me unarguably so, and therefore it does not seem to me the Defendants’ submission justifies a strikeout of the action.”

Similar issues have arisen in other jurisdictions.  In Tarasoff v Regents of the University of California (1976) 551 P.2d 334, the Supreme Court of California considered whether a therapist had a duty of care to warn an identifiable third party, and those capable of warning an identifiable third party, that she was at risk of being murdered, upon being told by a patient during therapy of his intention to do so and upon him being released from police custody. The Supreme Court held that the therapist did.  In Safer v Pack (291 N.J.Sup. 619, 677 A. 2d 1188) 1996, the New Jersey Superior Court considered the question of whether a physician had a duty to warn the child of his patient of a genetic risk. The Plaintiff contended that the Defendant physician who had treated her father for utile polyposis several decades ago, owed a duty of care to warn her of her risk of developing the disease, a hereditary condition, that if undiscovered and left untreated, would lead to metastatic colorectal cancer.  The Superior Court held that the Defendant did owe the Plaintiff such a duty of care.

The ABC decision is no more than an arguability decision, but it does indicate that patient confidentiality and patient expressed preference may not always prevail when countervailing legitimate interests of others who are readily identifiable are potentially engaged. ABC is an important staging post in the discussion on the limits of physician-patient confidentiality, at any rate as regards genetic consequences.  This is a controversial area and will be an ongoing debate.  Following the decision in Safer v Pack the duty to warn laid down by the Superior Court was set aside by the New Jersey State Legislature.  Not only do the positions of both patients and third parties have to be considered, but also the positions of clinicians and therapists.