What does the law expect doctors to tell relatives at risk of hereditary conditions? | Bolt Burdon Kemp What does the law expect doctors to tell relatives at risk of hereditary conditions? | Bolt Burdon Kemp

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What does the law expect doctors to tell relatives at risk of hereditary conditions?

ABC v St George’s Healthcare NHS Trust and Others [2015]: The Duty of Care owed by doctors to third parties 1

The High Court decided in this case that it was not fair, just or reasonable to impose a duty of care upon a medical professional to tell a daughter of a patient that he had been diagnosed with Huntington’s disease.


The circumstances of the claim were heartbreaking. The claimant’s father was convicted of manslaughter and sentenced to a Hospital Order under the Mental Health Act 1983 after shooting and killing the claimant’s mother. His care fell under three different NHS Trusts which will collectively be referred to as the defendants. Whilst detained, he was diagnosed as suffering from Huntington’s disease in 2009. Huntington’s disease is a genetic condition that progressively damages the nerve cells in the brain. The condition is inherited in 97% of cases due to a faulty gene, meaning that a child has a 50% chance of developing the disease if a parent has been diagnosed.

His daughter received family therapy from one of the defendants’ clinics and attended multi-disciplinary meetings with doctors regarding her father’s care. Given that Huntington’s disease is inherited, and that she was pregnant at the time, permission was sought from the father by his treating doctors to disclose his diagnosis to his daughter to enable her to be tested. Her father refused permission for his diagnosis to be disclosed. The medical staff discussed whether his decision should be overridden but it was agreed that their duty of confidentiality to their patient prevailed and the claimant was not told. The claimant gave birth to her baby daughter in April 2010. In August 2010 the claimant was accidentally informed of his diagnosis by one of her father’s doctors. On the back of this, the claimant got tested and was diagnosed with Huntington’s disease in 2013. It is unknown whether the claimant’s daughter also has the condition, as she is currently too young to be tested.

The Claim

Due to the sensitive nature of the case the hearing was held in private and the names of those involved were anonymised. The claimant brought a claim alleging that if she’d known that she had Huntington’s disease at the time she was pregnant she would have terminated her pregnancy. The claimant claimed compensation for her own psychiatric injury caused. In addition to this, she claimed for the additional expense of raising her daughter, if she was also later diagnosed with Huntington’s disease. The claimant asserted that she had:

  • A claim for negligence; and
  • A claim under Article 8 (Right to private and family life) of the European Convention on Human Rights.

There was an initial court hearing held to decide whether she had grounds to succeed in these claims. The discussion below will focus upon the claim for negligence. However it is important to say that the court also decided that the claimant did not have grounds to bring a successful claim under Article 8.

The Duty of Confidentiality

One of the main arguments against disclosure was that the doctors owed a duty of confidentiality to the claimant’s father. The duty of confidentiality in the doctor-patient relationship was considered at length. Confidentiality is integral to the trust between doctors and patients. It encourages patients to be open and honest about their symptoms and to seek medical help.

There are, however, always circumstances in which it is acceptable to breach the duty of confidentiality. The duty is therefore not absolute. The GMC has produced guidance for doctors which provides advice on the scope of the duty 2.

The claimant argued that her father’s diagnosis of Huntington’s disease was an example of a situation where the duty of confidentially should have been overridden. She relied upon a report of the Joint Committee of the Royal College of Physicians, the Royal College of Pathologists and the British Society for Human Genetics entitled ‘Consent and Confidentiality in genetic Practice: Guidance and Genetic Testing and Sharing Genetic Information’3 , which said:

‘In special circumstances it may be justified to break confidence where the aversion of harm by the disclosure substantially outweighs the patient’s claim to confidentiality. Examples may include a person declining to inform relatives of a genetic risk of which they may be unaware, or to allow the release of information to allow specific genetic testing to be undertaken.’

It is clear from this that a diagnosis of Huntington’s disease certainly could be a just reason to depart from the duty of confidentially. However, the question to the court was whether it should have been disclosed in this situation. The court’s starting point was that the defendants’ were obliged to respect the confidentiality of the claimant’s father. In looking at whether they should have departed from this duty it was for the claimant to prove that she was owed a duty of care to be informed about her father’s condition by the treating doctors.

Establishing a Duty of Care

In order to be successful in a claim for clinical negligence it must be established the defendant owed a duty of care to the claimant. A duty of care is an obligation to act in the best interests and ensure the well being of another. In a normal doctor-patient relationship it is clear that a duty of care exists.

For other doctor-claimant relationships the duty of care test set by the courts has three stages 4:

  1. Is there sufficient proximity between the claimant and the defendant?
  2. Was the injury reasonably foreseeable?
  3. Would it be fair, just and reasonable to impose a duty of care on the defendant?

The defendants agreed that the first two points were likely to have been established by the court. However they contested the last, and submitted that it was not fair, just or reasonable to impose a duty of care in these circumstances.

The claimant argued at the hearing that as she had been undergoing family therapy with clinicians employed by one of the defendants, she could be considered to be one of their patients. As a result they owed her a duty of care under the normal doctor-patient relationship. The purpose of the therapy sessions was to help her come to terms with her father’s actions. The claimant argued that her father’s Huntington’s disease could have explained why he shot her mother. When considering this, The judge considered that even if the defendants owed the claimant a duty to care in relation to the family therapy, this did not extend to informing her of information which they held under a duty of confidence to another family member. The claimant therefore did not have a doctor-patient relationship that meant the defendants had a duty to disclose the diagnosis. This left a consideration of whether the doctors should be found to be responsible for the omission of failing to provide this information to her. For this, the claimant had to establish a particularly special type of direct relationship between them in order to hold the defendant liable. The court considered examples where such a relationship exists – employee/employer; school/child – and concluded that no such relationship existed in this case.

The claimant also asserted that the defendant’s had not properly considered her father’s ability to make decisions. Section 1(2) of the Mental Capacity Act 2005 prescribes that a person has capacity unless the contrary is proven. Under section 1(4) a person should not be treated as unable to make a decision simply because he makes an unwise one. Applying these principles the court concluded that there was not enough evidence, on the facts, that the claimant’s father lacked capacity to make a decision to withhold his consent for his diagnosis to be disclosed. The fact that he was suffering from a disease of the mind that diminished his responsibility for killing the claimant’s mother in 2007 was not enough to prove that he was incapable of making decisions.

Mr Justice Nicol stated that the claimant was trying to create an entirely new duty of care. He considered existing case law and the likely impact of introducing a new duty of care to third parties. The view was taken by the court that the current claim would be a radical departure from well-established cases and against the proper development of common law. The introduction of such a duty would have far-reaching consequences. He thought the burden placed on doctors to consider whether any confidential information they receive should be disclosed to third parties would be too great, and would distract from their role of treating patients.

Taking into account these factors, and the claimant’s difficulty in establishing a duty of care, it was decided that the claimant’s claim did not have a good enough chance of succeeding and the court struck out the claim. This decision may be somewhat difficult to accept given the emotive background and the serious nature of the genetic condition. However, the reasoning behind the finding can be understood, given the wider consequences of finding liability.

Impact on claims for clinical negligence

The law in this area has been considered and remains unchanged. An important factor in the court’s reasoning was that finding a duty existed would have been a radical departure from previous case law. It will therefore remain extremely difficult for a claimant to persuade the court that a medical professional should owe a duty of care to a third party such as a relative.

1 ABC v St George’s Healthcare Trust and others [2015] EWHC 1394 (QB)
2 General Medical Council, 2008, Consent: patients and doctors making decision together, Available at Consent Guidance (27/08/2015)
3 Royal College of Physicians, Royal College of Pathologists and British Society for Human Genetics. Consent and confidentiality in clinical genetic practice: guidance on genetic testing and sharing genetic information, 2nd edn. Report of the Joint Committee on Medical Genetics. London: RCP, RCPath, 2011.
4 Caparo v Dickman [1990] 1 All ER 568

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