womanA woman in the UK has won the right to sue her father’s doctors after they failed to inform her of his hereditary brain disease before she gave birth to her daughter. The mother, now in her 40s, has stated that she would not have given birth had she known the risks of her child inheriting the disease.

Huntington’s disease (HD) is a hereditary condition caused by progressive damage to nerve cells within the brain. Over time, this damage starts to present as changes in cognition, including behaviour, and difficulty moving that gradually worsens and will ultimately lead to the death of the patient. At present, there is no cure for the disease and no treatments have been effective at slowing the progression of neurodegeneration. In the UK alone, nearly 10,000 people have HD.

This particular case started roughly nine years ago when the mother’s father was arrested for shooting and killing her mother. He was convicted of manslaughter and sentenced to jail where, two years later, he was diagnosed with HD. It was later discovered that he’d passed the faulty gene responsible for the disease onto his daughter, known only as Ms M for confidentiality reasons, who was pregnant at the time of diagnosis.

His clinicians asked for his permission to inform his daughter of his diagnosis, but he refused for fear that she would kill herself or try to abort her pregnancy. Ms M, a medical professional herself, only found out about her risk of HD much later when another doctor accidentally told her. She has maintained that had she known about the risk of her daughter inheriting HD (a 50% chance), she would have terminated the pregnancy.

“I live every day knowing I’m gene positive. My young child also has a 50/50 chance of inheriting the disease and will have to live with this legacy. It will be her decision at 18 whether she wants to be tested but given the choice, I would never have inflicted this on her,” she told British news organisation The Times. “Day by day, she is what makes life worth living and, at the moment that life is great and we’re happy. But the future is a terrifying place.”

Ms M believes that her father’s clinicians had a duty to tell her about his diagnosis so that she could make informed medical decisions of her own. Two years ago she took her case to the High Court to sue three NHS trusts for negligence but the case was turned out because the judge was unwilling to place a duty on clinicians that would force them to reveal confidential information to family members. She then submitted her case to the UK Court of Appeals where, yesterday, it was announced that she had won the right to sue the doctors.

In the past, there have been many discussions about whether a doctor has the right to withhold health information from a patient, such as a paper published in the Ghana Medical Journal that argued doctors owed their patients the truth. However, it is unclear as to whether family members deserve to know about their relatives’ health when it might also affect them. Should Ms M’s case prove successful, it will likely result in the UK re-examining the laws governing patient-doctor confidentiality.