Newborn Screening Community Engagement


Goal:  Ensure that community input is used for developing policies for newborn screening.

The WSRGN initiates activities when needed In order to get a better understanding of parents’ opinions on newborn screening in the region.  For example, we recently completed a survey of parental attitudes towards newborn screening for for later onset disorders and preferences for when/how to notify parents the risks related to a positive newborn screen for later onset conditions.  Findings from these surveys will be used by regional and possibly national NBS policy makers to develop appropriate policies as to when to notify parents of risks related to a positive newborn screen for later onset conditions.