A woman is suing a London NHS trust for not telling her that her father, who had shot her mother dead, had been diagnosed with Huntington’s disease.
The woman, known as ABC, alleges that St George’s NHS Trust owed her a duty of care to tell her of her father’s diagnosis, given that doctors there knew she was pregnant.
She discovered he carried the gene for the degenerative, incurable brain disorder only after her daughter was born and that she too was carrying the faulty gene meaning her child has a 50:50 chance of inheriting it.
The woman, known as ABC, alleges that St George’s NHS Trust owed her a duty of care to tell her of her father’s diagnosis, given that doctors there knew she was pregnant
ABC said she wouldn’t have gone through with the pregnancy if she had known.
Her father was diagnosed with the condition in 2009 by doctors at St George’s NHS Trust, he then made it clear he did not want his daughter informed. She had told him she was pregnant. He told doctors he feared she might kill herself or have an abortion, as reported by the BBC.
In 2007, ABC’s father had 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 at the time that he might be suffering from Huntington’s disease, a fatal neurological condition.
Symptoms of the disease can include: mood swings and personality changes, difficulty concentrating and memory lapses; depression; stumbling and clumsiness; involuntary jerking or fidgety movements of the limbs and body; problems swallowing, speaking and breathing; difficulty moving.
Four months after her daughter, who is now nine, was born, ABC was accidentally informed about her father’s condition.
She was tested and found that she had inherited the Huntington’s gene. Symptoms usually start at 30 to 50 years of age, but can begin much earlier or later.
Her daughter has not yet been tested, but she will have a 50 percent chance of carrying the gene.
ABC told the BBC she would have had a genetic test and terminated the pregnancy rather than running the risk of having a child who had inherited the disease and could have to look after a seriously ill parent.
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.
At the time, ABC and her father were reportedly having family therapy organised by the NHS. ABC has argued that there was an an obligation to protect her psychological or physical well-being.
This is a cornerstone of the doctor-patient relationship, but it is not absolute.
If ABC wins her 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.
ABC’s case was first argued at the High Court back 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.
However, in 2017, the Court of Appeal reversed the decision and said the case should go to trial.
ABC’s case was first argued at the High Court back 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. However, in 2017, the Court of Appeal reversed the decision and said the case should go to trial
A spokesman 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.’
