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Patient confidentiality vs relatives at risk

A legal case has been making headlines this week concerning when confidential information can and should be disclosed.

Patient ABC is suing St George’s NHS Trust for failing to inform her that her father had been diagnosed with Huntington’s disease, which is an incurable brain-cell destroying condition.

Patient ABC’s father was diagnosed in 2009 after he was convicted of manslaughter on the grounds of diminished responsibility for shooting and killing her mother, in 2007.

Huntington’s disease is neurological condition which affects movement, cognition and can cause altered behaviour. It is a genetic disease caused by a faulty gene. Everyone diagnosed with the condition will have inherited it from one of their parents. If a parent has the faulty gene then each of their children has a 50% chance of carrying the gene. Those carrying the gene will go on to develop the disease, usually between the ages of 30 and 50. The condition gradually worsens over time and full time nursing care is generally needed in the later stages. It is usually fatal 15 – 20 years after symptoms start.

When he was diagnosed, patient ABC’s father told his doctors at St Georges’ NHS Trust that he did not want his daughter to know as she was pregnant and he was concerned the news would cause her to harm herself or her baby.

However, patient ABC was accidentally informed of her father’s diagnosis several months later, but by now her daughter had been born. Genetic testing has since revealed that patient ABC does carry the faulty gene and will go on to develop Huntington’s disease in time. Her daughter therefore has a 50% chance of also developing the disease.

Patient ABC has stated that, had she been told of her father’s diagnosis at the time of her pregnancy, she would have chosen to terminate the pregnancy to avoid the risk of her daughter carrying the disease and also to avoid her daughter having to care for a very ill parent as she herself deteriorated.

When the case first came to court in 2015 the main issue was whether St George’s NHS Trust should have informed patient ABC of the diagnosis, given she could be affected by it.

In addition patient ABC and her father were having family therapy at St George’s NHS Trust at that time and so she was a patient of the Trust.

Patient ABC lost this issue but was allowed to appeal. In 2017 the court of appeal reversed the decision of the high court which enabled the patient to take her case to trial.

Patient ABC’s argument is that she was owed a duty of care by the hospital trust and should have been informed of her father’s diagnosis. Normally a patient’s diagnosis is a matter of complete confidentiality. However, where the disease is genetic and direct relatives are known to be at risk of developing the disease, there is a powerful argument that they should be told. This is particularly the case where this knowledge would have given them the opportunity to do something differently, in this case to prevent further potential suffering by choosing to terminate the pregnancy.

The General Medical Council (GMC) has issued guidance on disclosure of information when considering the balance between the interest of the patient’s confidentiality or public interest and guidance suggests that there should be consideration given to “the potential harm to others (whether to a specific person or people, or to the public more broadly) if the information is not disclosed.”

For more information on Huntingtons Disease and its symptoms, visit the Huntingtons Disease Association website

Atherton Godfrey has a highly specialised team of clinical negligence solicitors available on 01302 320621 for any enquiries relating to clinical negligence claims.


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