When Genetic Testing Can Be Dangerous to Your Health
Until the majority of doctors catch up with the science, meeting with a genetic counselor or a clinician with training in the field is your safest option. Colleen Carroll, 46, has been on a mission to get everyone in her family to a counselor since she found out she was tested for the wrong gene. After being diagnosed with ovarian cancer in 2002, Carroll got tested for the BRCA1 and BRCA2 mutations at her oncologist's urging. When the results came back negative, Carroll thought she was in the clear.
A few years later, however, cancer started striking members of her family, including a second cousin who died from ovarian and endometrial cancers. When that cousin's father was diagnosed with intestinal cancer, the family finally met with a genetic counselor, who found that they, like the Wheelers, carried a mutation for Lynch syndrome. "Colleen did have a genetic mutation—it was just on a different gene that couldn't be picked up by BRCA testing," says certified genetic counselor Ellen Matloff, director of cancer genetic counseling at the Yale Cancer Center.
Today, even as she keeps up with regular colonoscopies, Carroll wonders if she could have spared her family if she'd seen a genetic counselor earlier. "My oncologist saved my life, and I'm forever grateful for that," she says. "But if I had been given the correct gene test first, maybe I could have saved my cousin."
Cheryl Platzman Weinstock is a science writer who specializes in women's health issues.
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