A lawsuit brought against a London hospital by a woman whose father's doctors failed to inform her of her risk of Huntington's disease could result in major changes to the laws surrounding patient confidentiality.
The woman's father was diagnosed with the incurable hereditary disease in 2009 but refused to let doctors inform his family. His daughter did not find out about her father's condition – and therefore was not tested herself – until after she had given birth to her own daughter. The woman subsequently tested positive, and her daughter has a 50 percent chance of also being affected. She claims that she would not have become a mother if she had known, and believes the doctors had a duty of care to share the information, even though it was against her father's wishes.
'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,' Dr Anna Middleton, head of society and ethics research at the Wellcome Genome Campus in Cambridge, told the Observer.
The case was 'struck out' (not permitted to proceed to trial) by the High Court in 2015, because of concerns that if doctors were required to disclose genetic information to a patient's family, it would undermine doctor-patient confidentiality. This decision was overturned by the Court of Appeal in 2017 (see BioNews 901), and a hearing date has now been set for November 2019.
The case raises many questions about the responsibilities that doctors have and when it is appropriate to share genetic information with relatives.
A spokesman for the woman's lawyers, Fieldfisher, emphasised that this case is 'very important'. He asked: 'Should clinicians be legally obliged to consider the interests of anyone they are reasonably aware of who could be affected by genetic information – or is the protection afforded by current professional guidance enough?'