This post has been updated to clarify the leadership of the BabySeq project.
Not too many parents are interested in signing up to know their newborn's genetic makeup, ScienceInsider reports.
The BabySeq project is enrolling 240 healthy newborns and 240 newborns who are ill in a study that aims to understand the implications of sequencing infants. A survey conducted by the group of 500 parents of newborns found that about half said they were "very" or "extremely" interested in sequencing, while another third or so said they were "somewhat" interested, ScienceInsider notes.
However, when the BabySeq team led by Brigham and Women's Hospital's Robert Green and Alan Beggs from Boston Children's Hospital went to enroll newborns into their study, they had a harder time: at the American Society of Human Genetics annual meeting, Green reported that the parents of 24 sick infants, out of 345 in neonatal intense care and the parents of 138 of 2,062 healthy babies have signed up with the project, ScienceInsider reports. The enrollment rate, Buzzfeed News notes, is about the same for the healthy and sick cohorts.
"I was surprised about that," Green tells Buzzfeed News.
The low recruitment rates have been attributed to logistics — parents would have to have returned to the hospital with their new baby to discuss the results — as well as to parents' worries about privacy, unclear results, or insurance discrimination. In addition, Green notes that parents were approached soon after the birth of their child and might have been feeling overwhelmed.
Some parents also changed their minds after meeting with a genetic counselor, which, genetic counselor Laura Hercher tells Buzzfeed News, underscores the importance of the informed consent process.