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Warning for the Curious

Many people turn to direct-to-consumer genetic testing to learn about their ancestry and — prior to the FDA crackdown — their health risks. But, as Vox reports, some people are learning more than they were prepared to know.

Neil Schwartzman and Jolie Pearl were highlighted on 23andMe's blog as an example of a happy reunion of an adoptee and his sister, Vox's Julia Belluz writes. But while the duo was at first glad to get to know one another, the excitement wore off.

Pearl tells Belluz that she didn't feel adequately warned about what she might learn by opting into 23andMe's relative finder program. "You get this information online with no preparation, no support, no referrals, and no references that you might have if you were going to an agency to help you find your adoptive family," she says. She adds that having and giving up Schwartzman for adoption was her "mother's secret."

Even informed consumers, Belluz says, may not realize what they may find. A biologist she calls George Doe signed up for 23andMe's service when he was teaching a course on the human genome. In a related article, Doe recounts how giving 23andMe kits to his parents contributed to their divorce — testing led to the discovery that Doe's father had had a child before marrying Doe's mother.

He, too, says there should be better warnings about what users might uncover.
"When you check that [close relatives] box it should have a bunch of stars and bells and whistles around it. Because there are plenty of people who click boxes," Doe says. "Nobody reads their iTunes agreement. That's how I feel about the family finder thing — you just check all the boxes, just keep doing it, and never put a whole lot of thought into the possibilities."

However, Belluz writes that beginning this month, users will be automatically opted into 23andMe's relative finder program."We had many more customers complaining about [relatives not showing up because they didn't to opt in] than discovering someone wasn't related to them," Joanna Mountain, the senior director of research at 23andMe, tells Belluz.

And despite his negative experience, Schwartzman still says he's glad he went through it. "It didn't take long for him to have that realization that many adopted kids experience: that his real family isn't his biological one," Belluz adds.

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