Women who inherited fatal illness to take legal action against doctors in landmark case

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A woman is suing a London hospital trust in a ground-breaking case that could bring major changes to the rules surrounding patient confidentiality.

The woman is unhappy at doctors who failed to disclose to her about her father’s fatal hereditary disease before she had her own child.

It was only after she had given birth that she discovered that her father carried the gene for the degenerative, brain condition, Huntington’s disease and it had been passed onto her and that her now eight-year-old daughter has a 50 per cent chance of possessing the gene.

Huntington’s disease is a fatal neurological disease usually caused by a mutant gene inherited from a parent, although in a small number of cases the mutation appears to arise spontaneously. Symptoms usually start between 30 and 50 years of age.

The woman claims that she would have aborted the child had she known about her father’s condition and is now taking legal action against the doctors who she believes to have been negligent in failing to tell her of the risks her and her child faced.

Anna Middleton, head of society and ethics research at the Welcome Genome Campus in Cambridge said: “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”

Experts now believe that as more is discovered about the genetics of medical conditions, including cancer and dementia, doctors will come under increasing pressure to consider not only their patients’ needs but also those of relatives who may share affected genes.

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