Rethinking confidentiality: Does a child have the right to know if a parent has the Huntington’s disease gene?

HDPatientatEdgemoor
An HD patient at Edgemoor Hospital in Santee, CA. Image credit: Mike Nowak

Lawyers are bringing a case against a London hospital trust that could trigger major changes to the rules governing patient confidentiality. The case involves a woman who is suing doctors because they failed to tell her about her father’s fatal hereditary disease before she had her own child.

The woman discovered – after giving birth – that her father carried the gene for Huntington’s disease, a degenerative, incurable brain condition. Later she found out she had inherited the gene and that her own daughter, now eight, has a 50% chance of having it.

The woman – who cannot be named for legal reasons – says she would have had an abortion had she known about her father’s condition, and is suing the doctors who failed to tell her about the risks she and her child faced.

Related article:  Chinese scientists may have figured out how to attack the protein created by Huntington’s damaged gene

“The outcome is potentially very important,” said a spokesman for Fieldfisher, the London law firm representing the woman. “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?”

[T]he case of Patient ABC versus St George’s Healthcare Trust was set for trial in November next year.

Read full, original post: Woman who inherited fatal illness to sue doctors in groundbreaking case

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