Legal action over non-disclose of Huntington’s disease could shake up patient confidentiality

Major changes to patient confidentiality could be on the horizon as a woman brings a case against a London Hospital after its failure to disclose her father’s hereditary disease before having her own child.

The woman’s lawyers said she would have aborted her child if she had known that her father had Huntington’s disease. Doctors at St George’s hospital did not inform the woman of her father’s diagnosis and therefore, she was unaware of the risks she and her child faced.

The woman discovered her father carried the gene for Huntington’s disease after the birth of her child. She also learned that she inherited the gene for the disease – which damages nerve cells in the brain and has no cure – with her daughter having a 50 per cent chance of also inheriting the disease.

It has been reported that the father’s doctors had advised him to tell his daughter about the diagnosis. However, the father refused to do so, and doctors did not contact the family out of respect for his medical confidentiality.

The case is the first in English law to look into a relative’s claim over matters of genetic responsibility and has significant implications for patient confidentiality.

As more research is done into the genetic components of diseases, there will be greater emphasis on doctors to consider relatives who may share affected genes in addition to the patients themselves. This could therefore extend the duties of doctors to include tracing the relatives of patients with genetic conditions, or risk being sued.

Paul Bennett, partner at Hutchinson Thomas, who specialises in personal injury and clinical negligence, claims the result of this case could see important changes to medical law in the UK. It raises many questions about the extent of doctors’ duty of care to the relatives of those with such serious conditions.

“With the ‘sea-change’ in attitude brought about by the NHS Duty of Candour in the treatment and communication with patients and their relatives, this development could open up a wholly new area of responsibility for the medical profession as to how they approach the management and care of those with genetic diseases and conditions.”

For specialist legal advice regarding patient confidentiality or clinical negligence, contact Paul on 01639 640154 or email