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Huntington’s: Judgement on Doctors' Duty to Tell Family

The High Court has passed judgement in the case of a woman who claimed she was owed a duty of care by three NHS Trusts to be told, against her father's wishes, that he had Huntington's disease.

The woman, known in court only as ABC, was suing the NHS and claimed she would have terminated her pregnancy if she'd known her father had the fatal, inherited condition. Instead she discovered his diagnosis by accident 4 months after giving birth.

She has since tested positive for Huntington's disease.

Duty of Care

The Judge, Mrs Justice Yip, said ABC had "not proved that she would have undergone a termination if notified of the risk during pregnancy" and so the damages claim was dismissed.

However, the Judge did conclude that South West London and St George's Mental Health NHS Trust did in this case owe the woman "a duty of care to balance her interest in being informed of her genetic risk against her father's interest and the public interest in maintaining confidentiality".

Mrs Justice Yip said in her conclusion: "The duty I have found is not a free-standing duty of disclosure nor is it a broad duty of care owed to all relatives in respect of genetic information. The legal duty recognises and runs parallel to an established professional duty and is to be exercised following the guidance of the GMC and other specialist medical bodies."

She continued: "Although aspects of the process of decision-making and the record-keeping may be subject to criticism, I have not found any actionable breach of duty on the part of the second defendant [South West London and St George's Mental Health NHS Trust]. The decision not to disclose was supported by a responsible body of medical opinion and was a matter of judgement open to the second defendant after balancing the competing interests."


In a statement, the Huntington's Disease Association said: "This case demonstrates the complex nature of hereditary disorders and the sometimes conflicting needs between family members for information.

"There is already strict guidance around genetic testing protocol and the ruling will serve to further support this."