Disclosure to non-patients: the balancing act between competing interests

Executive summary

In an important decision with potentially significant implications around disclosure of medical information to non-patients, the High Court has found that 3 NHS trusts had not been negligent in not disclosing to the claimant, known only as ABC, that her father had been diagnosed with Huntingdon’s disease. Whilst the circumstances of the case were extraordinarily sad, and with the judge expressing great sympathy for the claimant, she nevertheless held that the balancing act which had to be carried out in considering the duty of care to ABC with that of her father’s interest (he had refused consent for disclosure to be made) and the public interest in maintaining confidentiality had been done satisfactorily and that the decision not to disclose was supported by a responsible body of medical opinion.

Background

The circumstances which gave rise to the claim were upsetting and tragic. In 2007, ABC’s father killed her mother and was subsequently found guilty of manslaughter due to diminished responsibility. He was made the subject of a hospital order under the Mental Health Act and placed in a facility run by the second defendant where clinicians believed that he might be suffering from Huntingdon’s disease. He tested positive for the condition, the results being available on 9 November 2009, but he agreed to testing only on the basis that the results were not shared with his family.

ABC became pregnant in July 2009 and it was agreed that the last date when she could have had a termination was 6 December 2009. Whilst the doctors knew of ABC’s pregnancy and wanted to disclose her father’s condition to her, he refused to agree. He had previously expressed the view that if his daughters knew of his condition, this might affect their decision as to whether to have children at some point in the future. ABC later found out by accident and following tests several years later, discovered that she had indeed inherited the same genetic condition. Understandably, this caused her enormous distress and she later brought a claim for ‘wrongful birth’, the basis of her argument being that she would, on finding herself pregnant, have had a termination if her father’s doctors had told her that he had Huntington’s disease and that she was a carrier of the gene that caused it.

The decision

The judge, Mrs Justice Yip, found that two of the trusts involved in her father’s care had no duty of care to her, but a third trust, South West London and St George’s Mental Health NHS Trust, where ABC was participating in family therapy, did owe her a duty of care, but this had not been breached. The judge noted that health care professionals do indeed owe a legal duty to balance the rights and interests of another person with those of the patient — and the public interest — in preserving confidentiality, where disclosure could reduce or prevent a significant risk of serious harm. However, she concluded that in this case, that balancing act had been carried out as required which meant that there had been no breach of the duty of care. Furthermore, she added, while she was very sympathetic to her situation, even if ABC had succeeded in proving that the trust had breached its duty of care, she had not proved, on the balance of probabilities, that she would have terminated the pregnancy.

Conclusions and implications

Mrs Justice Yip was keen to stress in her judgment that the duty which she had set out as the basis for the decision was in keeping with existing professional guidance. GMC guidance from 2017 advises ‘If a patient refuses consent to disclosure, you will need to balance your duty to make the care of your patient your first concern against your duty to help protect the other person from serious harm’. She then noted that the duty which she had found was not a freestanding duty, neither was it a broad duty of care owed to all relatives in respect of genetic information. The legal duty recognised and ran parallel, she said, with an established professional duty, to be exercised following GMC and other medical bodies’ guidance.

Essentially, therefore, the legal position has now been brought in line with existing professional guidance, but the judge was keen to ensure that the duty is not confined to cases involving genetics; it applies to all healthcare professionals and all confidential information that could be disclosed to prevent serious harm, as long as the healthcare professionals have a sufficiently close relationship with the family member who is at risk. However, it will be absolutely crucial for all those involved to ensure that these balancing acts are carried out fully and appropriately.