Should scientists give results to participants in research studies if they haven’t been validated in a clinical lab?
SALT LAKE CITY—In the mid-2000s, when Vicki Rieke’s mom was being treated for her second bout of colon cancer in a hospital out of state, doctors suggested it was time to get tested. Colon cancer can be genetic, but it is also one of the more preventable cancers. A genetic test could give Vicki and her siblings life-saving information.
As it turns out, her mom, Dianne King, did have a mutation for Lynch syndrome. The condition predisposes people to a whole host of cancers. (She passed away last month after her sixth cancer.) Her children had a 50/50 percent chance of inheriting that Lynch syndrome mutation. So when the test requested by her mom’s doctors came back positive for Rieke, too, that news didn’t shock her. “It was kind of just not surprising with my mom’s history,” she said.
The shocker came more than 10 years later: Rieke, who is now 46, got retested at a new lab in Utah, and it...