23andMe can open a Pandora’s Box of a family’s medical secrets: ‘As hard as it is knowing, not knowing is much worse’

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23andMe can open a Pandora’s Box of a family’s medical secrets: ‘As hard as it is knowing, not knowing is much worse’
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Turns out that 23andMe kit you got for Christmas can unearth decades of family secrets.

Unwrapping the holiday gift of a genetic testing kit could mean revealing a previously unknown world of health concerns — and complicated family questions.

Pomerantz first learned of her BRCA1 mutation from a 23andMe test. She confirmed it with a genetic counselor. She had preventative surgery, including a mastectomy with implant reconstruction. Such results, as Pomerantz discovered, can unleash all sorts of difficult medical questions about further verification, treatment and possible surgery. Those same results can also force personal dilemmas: With whom should users share surprising or unwelcome medical results? And how do they break such news?

‘You’re less likely to regret having communicated than having kept it a secret.’ —Gillian Hooker, president-elect of the National Society of Genetic Counselors Clayton hopes people would eventually tell family members about results, and says a consensus of doctors share the same view. “We like for people to be able to share this information, so that other individuals can be tested if they choose to be. If they are found at risk, they can do something to try to prevent it,” said Clayton.

The Pentagon recently advised military members not use the direct-to-consumer tests, Yahoo! News reported VZ, -0.89% “All of our customers should be assured we take the utmost efforts to protect their privacy, and that the results we provide are highly accurate,” a 23andMe spokeswoman said. “Our FDA-authorized health reports have been tested to be over 99% accurate.” All testing is done in the United States and the company doesn’t share any information without clear consent from customers, she added.

It’s important to know the context surrounding any distressing diagnosis, like family history and lifestyle factors, Hooker said. “Take a breath and make sure you know what it means first,” or find someone who can explain results, she said.

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