NEW YORK (CBS) A trial is underway at Boston's Brigham and Women's Hospital that allows doctors to use genomic sequencing to screen newborn babies for about 1,800 conditions. By testing babies long before they show symptoms, doctors have hope to start treatment early. While the testing could save lives and prevent suffering, it also raises questions of privacy and discrimination.
The day after their daughter Cora was born, Lauren Stetson and her husband, Kyle, got an unexpected visit from a genetic counselor.
"I was in full recovery mode, as in, 'I don't care about anything," Stetson recalls saying.
The visitor offered a free DNA scan for Cora -- a scan that the Stetson's learned could reveal disease-causing variations in their daughter's genetic code. Baby cora is now one of the first healthy kids in America to have had her genome searched for hidden problems.
Doctors found a partial biotinidase definciency, something that Cora showed no outward signs of having. Had it not been detected, it could have caused a permanent drop in her IQ.
Dr. Robert Green is a medical geneticist at Harvard and co-director of the BabySeq Project, which enrolled Cora, and is now recruiting hundreds of other families.
Reporter Tony Dukoupil: You could potentially save a child's life.
Dr. Robert: Absolutely.
But Dr. Green is also warning families about the risks, including breaches of privacy and genetic discrimination. "We can't predict what kind of discrimination is going to be occurring by the time your child grows up," he said. "We can't predict whether there's some sort of privacy breaches... And we, most importantly, can't predict the information's accurate."
Many genetic variations turn out to be harmless, and, even if not, most of the conditions Dr. Green's team is looking for still have no cure.
Baby Cora is beating her condition, thanks to a daily vitamin mixed into some yogurt. And yet, about nine out of ten families approached by Dr. Green and his team have declined the testing. "People are distrustful of information gathering. They're hearing about all these break-ins and hacks," Green said.
But Dr. Green believes the fear is temporary, and before long, most Americans will feel much like the Stetson's already do. "I always think that more knowledge is power," Stetson said.
The first results, expected in the next couple of years, will help doctors and lawmakers decide how to use this technology responsibly.