Woman Sues Hospital for Keeping a Secret

Englishwoman says she should have known about her father's Huntington's Disease
By Neal Colgrass,  Newser Staff
Posted Nov 25, 2018 1:15 PM CST
Hospital Sued for Keeping Disease Secret
An edited microscopic image of medium spiny neurons (yellow) with nuclear inclusions (orange), which occur as part of Huntington's Disease.   (Wikimedia Commons)

A woman who inherited Huntington's Disease is suing a London hospital for not divulging that her father had the degenerative illness, the Guardian reports. Still unidentified, the woman says she would have aborted her child if she'd known, and now worries for the future of her 8-year-old daughter—who has a 50% chance of inheriting the incurable brain condition. It's the first time England has faced such a case of genetic responsibility: "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," says Anna Middleton, an ethics expert at Cambridge University. It's "unhappy" news, she notes, and "you cannot take back that information once you have given it."

The woman who's suing has a dark backstory: Her dad murdered his wife in 2007 and was diagnosed with Huntington's disease two years later, but asked doctors at St George's Hospital in south London not to tell his pregnant daughter for fear she'd get an abortion. The doctors agreed, but in 2010 the woman received her own diagnosis, giving her a 50% of succumbing to Huntington's. So she sued St. George's Healthcare NHS Trust, a case that's now proceeding after being thrown out by a high court and reinstated on appeal. On the brighter side, the BBC reported last year that an experimental drug can correct the defect that causes Huntington's. "For the first time we have the potential, we have the hope, of a therapy that one day may slow or prevent Huntington's disease," says the study's lead researcher. (Another woman is suing a hospital for ignoring her purple bracelet.)

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