Ovarian Cancer Risk: Don’t Believe Everything You Learn from Direct-to-Consumer Genetic Tests

“The testing only looks at very specific mutations in a very specific population,” says Lauren Mills, a genetic counselor at UT Health San Antonio. “There are many different mutations that an individual can have in a gene.”

Some people, Mills says, may test negative for the one type of gene that the consumer test looks for and then get a false sense of security that they are “totally protected against developing cancer.”

Having clinical genetic testing done — meaning tests issued from a medical professional — can empower women with far more information about their cancer risk than direct-to-consumer tests can. When women receive one of these clinical tests, they also tend to have access to genetic counseling that they wouldn’t have after receiving, say, 23andMe results. These counselors can help women make sense of their results and decide on the best course of action should they learn that they have a significantly higher risk of ovarian cancer due to a genetic inheritance.

Additionally, there are growing concerns about the privacy question — that is, whether the information gleaned from a direct-to-consumer genetic test may end up being shared. Actual genetic testing clinics are obligated by law not to share their patients’ personal information, says Mills, who adds that another, newer law called “GINA,” which stands for “Genetic Information Nondiscrimination Act,” protects against discrimination from health insurance companies based on genetic test results.

“Your results are private,” Mills says. “Having clinical genetic testing will allow your information to be more protected than direct-to-consumer testing, such as 23andMe or ancestry.com.”

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