Surprisingly few new parents enlist in study to have baby's genome sequenced

One of the first studies to explore the idea of routinely sequencing the genes of newborns to help guide their health care has run into an unexpected road bump: Few parents approached are interested in having their baby’s genome profiled.

When Robert Green, a geneticist at the Harvard University–affiliated Brigham and Women’s Hospital in Boston, and co-workers began planning to sequence babies about 4 years ago, they surveyed more than 500 parents of healthy newborns. Nearly half declared they would be “very” or “extremely” interested and another 37% said “somewhat.” But since their actual BabySeq Project began last year in May, only about 7% of more than 2400 couples approached so far have agreed to participate, says Green, who co-leads BabySeq with Alan Beggs of Boston Children's Hospital. That “very surprising” figure is the same both for parents of very sick infants and those with healthy babies, he adds.

BabySeq is one of four projects funded by the National Institutes of Health (NIH) 3 years ago to probe the risks and benefits of sequencing newborns’ DNA and compare the results to conventional newborn...