Mother suing NHS trust after doctors failed to reveal Huntington’s disease risk – inews

Posted: November 18, 2019 at 10:44 pm

NewsHealthWoman alleges that St George's in London owed her a duty of care to tell her of her father's diagnosis given staff knew she was pregnant

Monday, 18th November 2019, 7:57 pm

A woman is suing a NHS trust for not revealing her father had been diagnosed with Huntington's disease before she had her own child.

The woman, known as ABC, learned by accident that her father carried the gene for the degenerative, incurable brain disorder four months after her daughter was born. She was tested and found she had inherited the Huntington's gene, which means she will eventually develop the disease. Her daughter has not been tested, but has a 50:50 chance of inheriting it.

The woman alleges that St George's NHS Trust, London, owed her a duty of care to tell her of her father's diagnosis, given that doctors there knew she was pregnant. ABC says that had she known about her father's condition she would have had a genetic test and would have had an abortion, rather than allowing her daughter to run the risk of inheriting the disease or having to look after a seriously ill parent.

At the time, ABC and her father were undergoing family therapy organised by the NHS, so she argues that there was an obligation to protect her psychological or physical well-being. The NHS said the case raised competing duty of care and duty of confidentiality issues.

Secret of father's illness

If ABC wins the case, it would trigger a major shift in the rules governing patient confidentiality, and raise questions over the potential duty of care owed to family members following genetic testing.

In 2007, ABCs father shot and killed her mother. He was convicted of manslaughter on the grounds of diminished responsibility and detained under the Mental Health Act. It was suspected that he might be suffering from Huntingtons.

About 8,500 people in the UK have Huntington's disease and a further 25,000 will develop it when they are older. It is a rare inherited disorder which progressively destroys brain cells. Huntington's generally affects people in their prime - in their 30s and 40s - and patients die about 10 to 20 years after symptoms start. Some patients describe it as having Parkinson's, Alzheimer's and motor neurone disease rolled into one.

When his diagnosis was confirmed in 2009 by doctors at the trust, ABC's father told medics he did not want his daughter informed. She had told him she was pregnant and he told doctors he feared she might kill herself or have an abortion.

This case was first argued at the High Court in 2015 when a judge ruled that a full hearing should not go ahead. The judgement said there was "no reasonably arguable duty of care" owed to ABC. But in 2017, the Court of Appeal reversed that decision and said the case should go to trial. Experts say disclosure of personal information, without the consent of a patient, may be justified to prevent exposing others to a risk of death or serious harm.

'Duty of confidentiality'

Emily Jackson, a law professor at the London School of Economics, said: "If a patient doesn't want her doctor to tell her children about her terminal diagnosis, for example, or her HIV status, then it goes without saying that the doctor should respect the patient's confidence.

"The complicating factor with a genetic diagnosis is that it isn't just information about the individual patient, but it also reveals that his or her relatives are at risk. In such circumstances, and where the relative could act upon that information, should the doctor's duty be extended to the patient's close family members?"

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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Mother suing NHS trust after doctors failed to reveal Huntington's disease risk - inews

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