Full Description
For over 60 years, public health newborn screening programs have served families in the United States by identifying babies at risk of serious but treatable conditions and connecting them to clinical care. Today, more than 98% of infants receive dried blood spot screening, which entails collecting a few drops of blood during the first days of life, applying them to a paper card, and sending the card to a lab to be tested for markers of specific health conditions like congenital hypothyroidism, cystic fibrosis, and sickle cell disease. The public health impacts of newborn screening are vast, with over 7,000 infants identified annually for timely interventions. Despite these achievements, challenges in implementing newborn screening programs persist.
In response to a congressional request, the Office on Women's Health of the U.S. Department of Health and Human Services asked the National Academies to convene an ad hoc committee of subject matter experts to examine the current landscape of newborn screening in the United States, recommend options to strengthen this public health service, and establish a vision for the future. Supplementary funding was provided by the Chan Zuckerberg Initiative to enable additional public engagement. The resulting report provides actionable recommendations for navigating the path ahead while preserving and enhancing what is already considered a valuable and effective public health achievement.
Table of Contents
Front Matter
Summary
1 Introduction
2 Current Landscape of Newborn Screening in the United States
3 Grounding NBS Decision Making in Ethical Principles and Values
4Supporting and Sustaining High-Performing NBS Programs
5 The Responsible Application of Emerging Technologies in Public Health Newborn Screening
6 The Research Enterprise Relevant to Newborn Screening
7 Envisioning the Future of Newborn Screening
Appendix A: Information Sources and Methods
Appendix B: Committee Member and Staff Biographies
