Parental survey of interest in newborn genome screening research

There is considerable interest in conducting research in the controversial area of using genome sequencing to screen for future health risks in newborns. The 48 hours immediately after delivery is the most efficient time to enroll parents into empirical studies of newborn genome screening (NGS). However, even asking parents at this time might cause confusion or prompt refusal of state-mandated newborn screening (NBS), putting babies at risk. We conducted a survey among parents of healthy neonates on the post-partum unit at Brigham and Women's Hospital assessing parents' interest in participating in NGS research. Parents were systematically approached while on the post-partum unit and 87.3% agreed to participate. Among 216 parents queried about their interest in NGS, none questioned or declined state-mandated NBS. Parents rated their interest in NGS research on a 5-point Likert scale and responses were dichotomized to “not at all” or “a little” interested in NGS, versus “somewhat,” “very,” or “extremely” interested. In the hospital, 182 (84.3%) parents were at least “somewhat” interested in NGS, and 101 (46.8%) were “very” or “extremely” interested. Level of interest was not significantly associated with parents' age, sex, race, education, income, or number of biological children. These preliminary data suggest that parents of healthy neonates can be surveyed about NGS in the hospital without threatening compliance on conventional NBS. Interest in research that would involve NGS is high among parents of newborns in the hospital, with nearly half reporting that they would be “very” or “extremely” interested in such research.