A woman is suing doctors for negligence because they did not tell her about her father’s fatal hereditary disease before she had her own child.
The woman, now in her 40s and who has an eight-year-old daughter, has said she would not have given birth if she had known her father had the incurable condition Huntington’s disease.
He is said to have withheld the information – delivered to him by doctors at St George’s Hospital in south London – for fear the woman would try to kill herself or have an abortion.
The woman, who cannot be named for legal reasons, has since found out she has inherited the gene, that that her child has a 50% chance of have it.
Huntington’s disease is a progressive neurological disorder that normally appears in adulthood and causes involuntary movements, psychiatric symptoms, and dementia.
Anna Middleton, head of society and ethics research at the Wellcome Genome Campus in Cambridge told the Observer newspaper: “This could really change the way we do medicine, because it is about the duty that doctors have to share genetic test results with relatives and whether the duty exists in law.”
The woman’s father shot and killed her mother, and was diagnosed with the disease two years after he was convicted of manslaughter. When doctors asked for permission to tell his then-pregnant daughter about his diagnosis, he refused.
Currently incurable, Huntington’s affects an estimated 10,000 people in the UK and a further 25,000 are thought to be at risk. Patients usually die within 20 years after the onset of symptoms.
A spokesman for FieldFisher, the London law firm representing the woman told HuffPost UK: “The outcome of the case is potentially very important for clinicians practicing in this field. It will address whether the professional duties that already govern clinical practice should be reinforced by legal duty.
“Current professional guidance and clinical practice recognise that the results of genetic tests can provide information highly relevant to both the individual who provides the original sample and to close family members.
“This case considers whether clinicians should be legally obliged to consider the interests of anyone they are reasonably aware of who could be affected by that genetic information, beyond the patient, or whether the protection afford by current professional guidance is enough.”
The woman, who claims the trusts’ doctors had a duty of care to share her father’s diagnosis with her even if it was against his wishes, sued St George’s Healthcare NHS Trust, alleging it violated her human rights under article 8, the right to family life, but her claim was rejected.
It has now been overturned by the court of appeal and the case is set for trial in November next year.
In 2015 she told The Times: “I live every day knowing I’m gene positive… I would never have inflicted this upon [my daughter]. 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. The doctor’s decision not to tell me meant all my choices were taken away from me.”