Genome Sequencing For Babies Brings Knowledge And Conflicts

By sequencing a newborn's genome, doctors could screen for more genetic conditions. But parents could be confronted with confusing or ambiguous data about their baby's health.

By sequencing a newborn's genome, doctors could screen for more genetic conditions. But parents could be confronted with confusing or ambiguous data about their baby's health.

When Christine Rowan gave birth prematurely in August, her new baby was having problems breathing. So Rowan brought her daughter, Zoe, to the Children's National Medical Center in Washington, D.C., for genetic testing.

"It's funny because when we first had the testing done, we didn't even really think about the fact the testing was going to lay out all of her DNA," says Rowan, 32, who lives in Northern Virginia.

But while Rowan and her husband were waiting for the results, questions started popping into their heads.

"If we have all this information, when do we tell Zoe? You know, do we wait until she's a specific age and say, 'Oh, by the way we have all your DNA. ... Do you want to see what doctors have found?' " Rowan says.

"Or do we kind of keep that to ourselves? Or would it be better to just only get the information we really need and then genuinely not know so that we don't have to walk down that road? We don't really have that answer, at this moment."

Rowan's questions are at the heart of an intense debate over the prospect of using a test known as whole genome sequencing on babies.

Genome sequencing deciphers an individual's entire genetic code. The price of doing this has been dropping quickly, raising the possibility that sequencing can become more common than ever before. That includes the possibility of sequencing all babies when they're born.

Sequencing an individual's genome at birth would enable doctors to screen for far more genetic conditions than they do now. The hope is that it would catch more rare genetic conditions early, and help doctors prevent more complications and many deaths.

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Genome Sequencing For Babies Brings Knowledge And Conflicts