18 November 2019 14:40
A woman who was not told her father had a fatal progressive condition would not have had a child if she had known she could pass on the disease, the High Court has heard. The woman, who is in her 40s and is known only as ABC for legal reasons, alleges that three NHS trusts who were treating her father owed her a duty of care to tell her about his diagnosis. It was later found that he was suffering from Huntington's disease, an inherited condition which damages brain cells, causing disruption to movement, cognition and behaviour, often causing sufferers to be more aggressive. Medical staff sought the father's consent to disclose his diagnosis to his daughter, who was pregnant at the time, but he refused and ABC was only told about the condition by accident four months after her daughter was born. ABC was diagnosed with Huntington's in January 2013, but does not yet know whether her daughter is also affected as it is not usual to test until adulthood.
Opening the case in London on Monday, ABC's barrister, Lizanne Gumbel QC, said her client was "entirely certain" that she would have terminated her pregnancy had she been informed of her father's condition. ABC had "suffered severe psychiatric damage as a result of learning after she had given birth to her daughter that she herself had the abnormal Huntington's gene and that her daughter also had a 50% prospect of inheriting the abnormal gene", Ms Gumbel submitted. Giving evidence, ABC told Mrs Justice Yip: "If I was given the information, as I should have been, then I would have made the decision to test and terminate to not put my child through this." Mr Havers submitted that ABC "was not entitled to confidential information held by the defendants in the context of their doctor-patient relationship with" her father. 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. 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.
At the time, ABC and her father were reportedly having family therapy organised by the NHS. It could also raise further questions over the duty of care that is owed to family members following genetic testing. The court heard that there was 'no reasonably arguable duty of care' owed to ABC. 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. A woman is suing a London NHS trust for not revealing her father had been diagnosed with Huntington's disease before she had her own child.
The NHS said the case raised competing duty of care and duty of confidentiality issues. It was suspected that he might be suffering from Huntington's disease, a fatal neurological condition which progressively destroys brain cells. When his diagnosis was confirmed in 2009 by doctors at St George's NHS Trust, ABC's father made it clear he did not want his daughter informed. Four months after her daughter was born, ABC was accidentally informed about her father's condition. She was tested and found that she had inherited the Huntington's gene, which means she will eventually develop the disease. The woman 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 says she would immediately have had a genetic test and would have terminated the pregnancy, rather than allowing her daughter to run the risk of inheriting the disease or having to look after a seriously ill parent. At the time, ABC and her father were undergoing family therapy organised by the NHS, so she argues that there was an an obligation to protect her psychological or physical well-being. If ABC wins the 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. A spokesperson 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. A girl is suing a London NHS have confidence for no longer revealing her father had been identified with Huntington's disease before she had her devour baby. The NHS acknowledged the case raised competing responsibility of care and responsibility of confidentiality issues. When his prognosis became once confirmed in 2009 by medical doctors at St George's NHS Have confidence, ABC's father made it determined he did no longer settle on his daughter educated. Four months after her daughter became once born, ABC became once by likelihood educated about her father's condition. The girl alleges that St George's NHS Have confidence owed her a responsibility of care to suppose her of her father's prognosis, on condition that medical doctors there knew she became once pregnant. ABC says she would straight away occupy had a genetic test and would occupy terminated the pregnancy, rather then allowing her daughter to lag the threat of inheriting the disease or having to survey after a seriously ailing guardian. Getty Photographs Image caption At the time, ABC and her father were undergoing family therapy organised by the NHS, so she argues that there became once an an responsibility to present protection to her psychological or physical effectively-being. If ABC wins the case, it would put of residing off a significant shift in the foundations governing affected person confidentiality, and elevate questions over the skill responsibility of care owed to family contributors following genetic testing. A spokesperson for St George's Healthcare NHS Have confidence acknowledged: "This case raises complex and relaxed issues in admire of the competing interests between the responsibility of care and the responsibility of confidentiality.