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Doctors didn’t breach duty of care by not telling woman her father had Huntington’s disease

BMJ 2020; 368 doi: https://doi.org/10.1136/bmj.m820 (Published 02 March 2020) Cite this as: BMJ 2020;368:m820
  1. Clare Dyer
  1. The BMJ

A woman who sued three NHS trusts for negligence for not telling her while she was pregnant that her father had Huntington’s disease has lost her case in the High Court.1

The woman, referred to as ABC, claimed that she would have undergone a termination had doctors caring for her father, anonymised as XX, told her that he had the disease and that she had a 50% chance of inheriting the gene.

But Mrs Justice Yip ruled that two of the trusts involved in her father’s care had no duty of care to her, a third party. While South West London and St George’s Mental Health NHS Trust, where she was participating in family therapy, had a duty of care, doctors there had not breached the duty, the judge concluded.

Even if ABC had succeeded in proving that the trust had breached its duty of care, Yip decided, she had failed to prove that she would have had the termination had she known of her father’s diagnosis.

XX killed ABC’s mother in 2007and was found guilty of manslaughter by reason of diminished responsibility. He was made the subject of a restricted hospital order and was cared for by a hospital run by South West London and St George’s.

He developed gait difficulties and was referred to St George’s Hospital. Doctors there thought he probably had Huntington’s disease, but he refused genetic testing and was adamant that his two daughters should not be told of his probable diagnosis. Around the time that the likely diagnosis emerged, in July 2009, ABC became pregnant.

Her father eventually agreed to be tested on condition that the results were not shared with family members, but his positive results were not reported until 9 November 2009. It was agreed that the last date on which ABC could have undergone a termination was 6 December. Her baby was born in April 2010.

The psychiatrist responsible for her father’s care consulted geneticists and doctors responsible for the family therapy and decided against telling ABC. She learned of the diagnosis in August 2010 when the psychiatrist accidentally revealed it.

By then her sister was in the early stages of pregnancy. ABC argued that she should not be told and a clinical ethics committee agreed with this course of action.

ABC was not tested until 2013 and was found to have the gene for Huntington’s disease. Her sister’s result was negative for the gene.

ABC sued the trusts, but the case was initially thrown out by the High Court as disclosing no reasonable cause of action.2 The Court of Appeal overturned that ruling and ordered that the case go to trial.3

Yip said that doctors’ duty of confidentiality to patients was not absolute. It was “fair, just, and reasonable” to require the trust to balance ABC’s interest in being informed of her genetic risk against her father’s interest in confidentiality.

Yip said that there was no consensus among the experts in the case as to what the outcome of the balancing exercise should have been. She concluded that “the decision not to disclose was supported by a responsible body of medical opinion” and could not have amounted to a breach of duty.

Even if ABC had proved that there was a breach of duty, Yip added, ABC had not proved that she would have had the termination and would not have succeeded in her claim. If she had been told of the results after her father’s testing, it would have been too late for an abortion.

If she had been told in early October when it was thought that her father probably had the disease, Yip found it more likely that she would not have undergone testing in time to have a termination. “In effect, she would have made the same decision as she later made for her sister that testing during pregnancy would not be desirable,” Yip said.

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