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Camilla Grondahl asked genetics researcher Gholson Lyon a simple, heartbreaking question: Was she carrying a lethal gene that might kill her unborn baby?
Grondahl, 29, didn’t want to terminate her pregnancy, which began in 2010. She just wanted to know what the scientist knew.
“It was just more stress and worry while I was waiting for my baby to be born,” Grondahl recalled. “What do you plan for? Do you plan for him going to college or for a funeral?”
Lyon said he couldn’t tell her. A few months earlier, Grondahl had given blood for a DNA study Lyon was conducting on her family. She signed a form that said she would be notified of findings that had “direct medical significance,” without defining what that meant.
Grondahl is one of thousands of people in the U.S. who have undergone DNA testing for research purposes and aren’t receiving the results, even when the information has life-or-death consequences. That’s prompting a burgeoning ethical debate that has led to soul-searching among scientists and doctors.
While DNA sequencing is becoming more widely available, most...