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Trust sued over Huntington’s disease non-disclosure

Case could result in shift in confidentiality rules

Jo Carlowe

Monday, 18 November 2019

A woman is suing a London NHS trust for failing to disclose to her that her father had been diagnosed with Huntington’s disease.

The woman, known as ABC to protect the identity of her child, alleges that St George’s Healthcare NHS Trust owed her a duty of care to tell her of her father’s diagnoses given that doctors knew she was pregnant at the time.


However, the NHS has said the case raises competing duty of care and duty of confidentiality issues, as ABC’s father had said he had not wanted his daughter informed of his condition.

It was only after her baby was born that ABC discovered that her father carried the gene for the degenerative brain disorder, and that she also carried the faulty gene.

The woman has stated that she would have immediately had a genetic test and then terminated the pregnancy had she known.

At the time, ABC and her father were undergoing family therapy organised by the NHS, so she argues there was an obligation to protect her psychological and physical wellbeing.

In 2007, ABC’s father had been convicted of manslaughter on the grounds of diminished responsibility and detained under the Mental Health Act. His diagnoses of Huntington’s disease was not confirmed until 2009.

The woman’s case was first argued at the High Court in 2015 when the judge ruled that a full hearing should not go ahead, stating there was “no reasonably arguable duty of care” owed to ABC. However, in 2017, the Court of Appeal overturned the decision.

If ABC wins the case, it would prompt a major shift in the confidentiality rules that currently govern the doctor-patient relationship.

A spokesperson for St George’s Healthcare NHS Trust said: “This case raises complex and sensitive issues in respect of the competing interests between the duty of care and the duty of confidentiality. It will be for the court to adjudicate on those issues during the trial.” 

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