When follow-up counseling was provided to the fake consumers, GAO experts were appalled by what they heard. Undercover consumers talked to company representatives in secretly taped interviews. In one phone call an investigator asked, "So if I'm high risk, does that mean I'll definitely get breast cancer?" The company representative told her, "You, you'd be in the high risk of, you know, pretty much getting it."
Experts who listened to the recording of this exchange called it "disconcerting and horrifying." James P. Evans, editor in chief of the journal Genetics and Medicine and director of Adult Genetic Services at the University of North Carolina at Chapel Hill, was one of those experts: "The kinds of genetic variants tested for by this company give, at most, a very slight nudge in one's risk. Thus, to say you'll 'pretty much get it' is utterly incorrect," says Evans.
More troubling, Evans continued, is how such potentially life-changing information was delivered. "As a physician who has to give bad news to people all the time, I think it's scandalous that if the company person really believed that this woman was 'pretty much going to get breast cancer,' that she would tell her in such an unprofessional and casual way. This is a conversation that requires some empathy, tact and nuance."
Another undercover consumer was trying to learn more about a disturbing prediction that his results "were highly correlated with Alzheimer's disease." Even if a genetic testing site tells someone that they have a high risk for Alzheimer's, Evans said, they shouldn't be too concerned. "I would strongly deter you from cashing in your 410(k), because you may never get Alzheimer's."
These genetic tests can cost anywhere from hundreds of dollars to more than $1,000. Much less costly and far more reliable, say experts, is gathering information about your family's health history. A good place to start is with your own health history and that of immediate relatives.
Although the FDA has not asked genetic companies to stop selling directly to consumers, it's in the process of tightening regulations because of claims made about test results. The science of genetics offers a lot of promise, to be sure. But based on what government agencies are saying, you may do well to hold off on sending your DNA samples for analysis, and talk to your doctor instead.
Laurie Udesky is a San Francisco-based journalist.