The Unintended Consequences of Genetic Tests

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“It’s not gene equals disease,” Valerie Reyna, a professor and neuroscience researcher at Cornell University, explained to me. Although a specific gene may elevate the risk for a particular ailment, she noted that plenty of people will have the genetic mutation and not get sick, whereas others will get sick without the genetic mutation. “Those are very confusing ideas to people,” she said. The information itself can also be awkwardly—and hauntingly—vague, as in the case of my own test.

Some patients are able to use the results of genetic tests to proactively safeguard their health, perhaps by getting regularly screened for early signs of trouble or removing organs before cancer can grow, as in the case of a prophylactic mastectomy to prevent breast cancer. For others, evidence of an alarming mutation can trigger psychological distress, even despair.

“Genetic information is not psychologically neutral,” Matthew Lebowitz, a professor of medical psychology and psychiatry at Columbia University, told me. “People don’t just learn facts; they sometimes construct narratives about themselves based on genetic information.” He noted that some patients interpret a genetic predisposition to a particular condition as evidence that they are doomed or broken. People are “natural storytellers,” Lebowitz said. “We don’t necessarily experience genetic information as a spreadsheet of numbers and probabilities; we experience it as information about who we are.”

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