IIn order to get a better understanding of parents’ opinions on newborn screening for later onset disorders and preferences for when/how to notify parents risks related to a positive newborn screen for later onset conditions, the WSGSC developed a survey for parents. This survey has been distributed at the Hawaii New Baby Expo in May 2016 and findings will available August 2016. We hope that findings from this survey will be used by regional and possibly national NBS policy makers to develop appropriate policy for when to notify parents of risks related to positive newborn screen for later onset conditions.
Project Lead: Sylvia Mann
Staff Lead: Jennifer Boomsma