Dr Sharon Moalem recently diagnosed a mother with a rare type of hereditary ataxia, a neurological disorder for which there is no cure. "It's a horrible, horrible, devastating condition similar to Huntington's. Once you start showing symptoms, usually within 10 years you're wheelchair-bound and you start losing memory function."
There is a 50% chance that the woman's children have inherited the condition. "When I counselled her, she said: 'I feel like a child abuser.' I told her: 'There's nothing you could have done to prevent this.'
"You can imagine what she's going through. She just found out. Her first thought, and this shows what kind of mother she is, was for her children. She saw what her father [from whom she inherited the condition] went through and said she wouldn't have had children if she'd known."
Then the woman asked for something that Moalem, a Toronto-based American physician and geneticist, couldn't give her. "She said to me: 'I want to test my children but I don't want to tell them the results.' I said: 'My hands are tied. In most countries, you can't test children like that – it's taking away their autonomy.'"
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