Advising with empathy and experience

Woman with Huntington's disease gene fails in bid to sue NHS

A woman who claimed she would have had an abortion if she had known her father had a fatal, inherited brain condition has failed in her bid to sue the NHS.

She claimed three NHS Trusts owed her a duty of care to tell her about her father's Huntington's disease.

But the High Court ruled that the decision not to tell her about her father's diagnosis was supported by a "responsible body of medical opinion."

In her judgment in London, Mrs Justice Yip found that, on the balance of probabilities, the claimant would not have gone ahead with a termination of her pregnancy if she had been made aware of the risk.

She added that while she had "the greatest of sympathy for the tragic circumstances in which the claimant finds herself, this claim must be dismissed.”

The woman, known as ABC to protect  her daughter’s identity, found out that her father had Huntington's disease only four months after giving birth.Her father had told doctors he did not want his daughter told about his diagnosis, fearing she might kill herself or have an abortion if she found out.Huntington's disease, which can lead to aggression, is a rare inherited disease caused by a faulty gene and leads to the progressive loss of brain cells, affecting movement, mood and thinking skills.

Symptoms usually appear between the ages of 30 and 50. ABC's father tested positive for the condition in 2007 after he killed her mother and was detained under the Mental Health Act. Medical staff sought the father's consent to disclose his diagnosis to his daughter, who was pregnant at the time, but he refused. ABC, who is now in her 40s, told the High Court - which first heard the case in 2015 - she had found out about her father's condition by accident and was diagnosed with the disease in 2013.

Her daughter, who has not been tested, has a 50% chance of inheriting Huntington’s disease from her. Tests for the disease can be performed only when people reach 18.The woman was suing St George's Healthcare NHS Trust in south-west London and St George's Mental Health NHS Trust and Sussex Partnership NHS Foundation Trust for £345,000 in damages.

About 8,500 people in the UK have Huntington's disease and a further 25,000 will develop it when they are older. Huntington's generally affects people in their 30s and 40s and patients die about 10 to 20 years after symptoms start.               

Some patients describe the disease as like having Parkinson's, Alzheimer's and motor neurone disease rolled into one