By early next year, parents of newborns at two Boston hospitals will have the chance to participate in the first randomized study of the medical and ethical repercussions of sequencing the DNA of babies. The research is part of a major federal effort to finally settle a debate that has raged for years about the possible benefits and harms of finding out such information.
The five-year study, a joint effort of Boston Children’s Hospital and Brigham and Women’s Hospital, will receive $6 million over five years from the National Institutes of Health.
Parents in the Boston area who choose to participate in the research will be randomly assigned to either a group that has their infants’ DNA sequenced and learns the results, or a group whose babies do not undergo sequencing. The study will test whether that information helps guide the care of babies, and will monitor how pediatricians and parents react to knowing it.
Sequencing the DNA of newborns has been controversial, since the technology can reveal a vast amount of information about a baby, including risk for diseases that lie far in the future. Parents are making decisions to receive information that children might, when they are older, decide they do not want to know. While the information may inform medical care for the baby and even for other family members, it might also create undue worry.