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Within 24 hours of giving birth to a healthy baby girl, Lauren Stetson grappled with a dilemma: whether to enroll her newborn Cora in a study that would test the baby’s DNA and potentially foresee health issues that her parents might not otherwise discover.
Stetson, recovering from childbirth and just getting to know her second baby, was distracted. But her husband, Kyle, a technology enthusiast, listened intently, and they talked it over.
The researcher counseled the Stetsons on privacy concerns around genome testing and reminded them they were making a decision their grown daughter could very well disagree with. Unlike most of the families given the choice, the Stetsons said yes — intrigued by the possibility that the exhaustive information gleaned from their daughter’s genes might one day help her.
As it turned out, their case was one of the success stories in the “BabySeq” project, a federally sponsored clinical trial intended to test DNA sequencing in newborns — one of the more thought-provoking uses of the technology.
The Stetsons received clear, immediate and actionable information to help...