When a baby is born, their blood is tested for serious, treatable diseases such as sickle cell anemia and cystic fibrosis. But if you could screen your healthy baby for hundreds more rare genetic risks — which may or may not ever develop into disease — would you?
That question is at the heart of BabySeq, a clinical trial led by Dr. Robert Green at Mass General Brigham and Harvard Medical School. The study sequences the genomes of healthy newborns to identify rare genetic risks not included in standard screening.
"It's a simple concept, but it's way more complicated than you'd think," Green told TED Radio Hour host Manoush Zomorodi. "It's relatively easy to sequence DNA. It's becoming easier to interpret those findings. But what's really hard… is okay, so you put that risk variant in the hands of the family and the pediatrician. What do you do next?"
The Promise: Early detection can save lives
BabySeq looks for single-gene conditions that could impact a child's health. In some cases, that information can be lifesaving. Green shared the example of playwright Jonathan Larson, who wrote the broadway musical, Rent, and died from a heart condition believed to be related to Marfan Syndrome, a condition not included in standard newborn screening. If Larson had been aware he was carrying the mutation, Green says, instead of being misdiagnosed in emergency rooms, "they would've gone right to his aorta and imaged it and they would've seen it expanding. And they would've operated and probably saved his life."
But many results aren't that clear-cut, and not everyone in the medical community believes sequencing healthy newborns is a good idea.
The Concerns: DNA is not a crystal ball
Dr. Lainie Friedman Ross, a pediatrician and bioethicist, argues that for now, the risks may outweigh the benefits. "Just because you have the genes doesn't mean you're actually going to get the disease," she told Zomorodi.
Ross warns that this uncertainty can turn children into what she calls "patients in waiting" – with parents monitoring healthy children for conditions that may never appear. "Every time my kid sneezes, is this the disease coming on or is it just that my kid has a normal cold?" she asks.
Ross worries that overdiagnosis can lead to anxiety, stigma and overtreatment. She also cautions that offering consent-based genomic testing could erode trust in existing public health screening programs. If parents begin questioning the security or purpose of newborn screening altogether, she warns, "We're going to harm science in the future as well."
Green, however, remains optimistic. He now leads a project called BEACONS to test whether free genome sequencing can be offered to families across seven states. His ultimate goal is to move health care from reacting to illness toward preventing it.
"There are a lot of questions still out there," Green says. "But I would say the majority of us have moved the question from should it be done to: Let's find the most constructive and beneficial way in which it should be done. I think it's caught on now and I don't think we're going to go backwards."
Consider for yourself
If you're offered genetic sequencing for your baby, Ross suggests starting with yourself. "I would ask them, would they be willing to get their own genome sequenced and would they like to understand all the genetic risks that they themselves have?" Removing the right of your child to make that decision for themselves is an ethical question she suggests parents consider.
The technology is here and advancing. The real question is how much uncertainty you're willing to live with — and whether knowing more will actually help you and your child live better.
This story was adapted from the TED Radio Hour episode The secrets in your baby's dreams. It features geneticist Dr. Robert C. Green, director of the Genomes2People Research Program; Bethany Zettler, senior genetic counselor of Genomes2People Research Program; and Dr. Laine Friedman Ross, a physician at the University of Rochester.
This segment of the TED Radio Hour was produced by Phoebe Lett and edited by Sanaz Meshkinpour and Manoush Zomorodi. You can follow us on Facebook and email us at TEDRadioHour@npr.org.
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