Public Awareness of and Attitudes toward Newborn Screening

Objectives: To understand public awareness of newborn screening and public views on criteria needed for a disorder to be included in universal newborn screening. Methods: Adults in waiting rooms of internal medicine and pediatric clinics completed a survey. Results: 55% of participants (n=213) were unaware that all newborns are screened at birth for certain disorders. Nearly 60% supported screening only for disorders occurring more frequently than 1 in 10,000 births. The risk of death or long-term impairment, accuracy of screening test, frequency of disorder, availability of appropriate treatment and help with future reproductive decisions were considered “important” or “very important” while cost of the screening test, associated parental anxiety, and parental burden were not. Conclusion: Public awareness of newborn screening program remains limited. The results of this survey suggest that public support for the addition of rare disorders to the list of newborn screening may be limited.