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What to Know, What to Tell

Newborns in a handful of US cities will soon be part of an effort to study whether whole-genome sequencing should be a regular component of healthcare for infants. Four pilot projects recently received $25 million in funding from the US National Institutes of Health to test sequencing as a part of newborn screening.

As the Associated Press reports, screening infants is rife with ethical considerations. "Should parents be told only about childhood threats? Or would they also want to learn if their babies carried a key gene for, say, breast cancer after they're grown?" AP reporter Lauran Neergaard writes. "Could knowing about future risks alter how a family treats an otherwise healthy youngster? And how accurate is this technology — could it raise too many false alarms?"

An ongoing study at the Inova Translational Medicine Institute, Neergaard says, is studying the genomes of not only newborns, but also of their parents and other relatives. These researchers only return medically actionable results to parents.

"If it was something that we could hopefully prevent through diet or exercise or some kind of lifestyle change, we could start with that as early as possible," says Holly Sloan, a nurse whose daughter is part of the Inova study, to the AP. "I guess I'm just the type of person, I would rather know and address it."