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Is there a right time to give consent for genetic testing?

Chad Sapieha walks with his daughter Scarlett near his Toronto home earlier this month.

J.P. MOCZULSKI/The Globe and Mail

For Chad Sapieha, the choice is clear. He knows his daughter has a 50-per-cent chance of carrying the genetic mutation associated with a rare form of stomach cancer – Mr. Sapieha has the mutation, and so did his mother, who ultimately died of the cancer – but testing seven-year-old Scarlett for it isn't an option.

Mr. Sapieha and his wife haven't yet told her that she could be predisposed to cancer, although she knows that her father is. She was 31/2 when Mr. Sapieha, a Toronto-based freelance journalist, had his stomach surgically removed to pre-empt the possibility of developing the disease. "We're waiting for her to ask a question about it, and then we'll have an honest conversation about what it means for her," he says. "After that, it'll be her decision to make, whether to be tested or not."

Even if Scarlett expresses interest in knowing right away, he and his wife don't plan to give permission for testing before she's 18. "There are a lot of practical reasons for that," he says. "She might get a test because she wants to know, but then later she won't be able to get an insurance policy. She needs to think about all those things and make a decision as an adult."

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Meanwhile, Mr. Sapieha says, he tries to be a positive role model for her. "If she does have it, we want her to know that you can lead a perfectly normal life. I try to be the example for her."

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