Overview
Established in 2025, the Newborn Screening Collaborative (NBSC) is a volunteer group of patient advocacy, public health, and healthcare professionals from a broad range of medical specialties whose mission is to support and promote activities that advance universal newborn screening and enhance the ability of U.S. newborn screening programs to keep pace with technological and therapeutic advancements.
The NBSC will use transparent, evidence-based reviews of specific conditions or categories of conditions to advise the public and newborn screening programs in the US about conditions for which every baby should be screened. The NBSC is coordinated by the American College of Medical Genetics and Genomics (ACMG) and with support by the ACMG Foundation for Genetic and Genomic Medicine (ACMGF).
Current Status
The NBSC held its first in-person executive session in July 2026. Experts from across the country representing medical, laboratory, public health, and patient advocacy organizations convened in Washington, DC to discuss NBSC goals, processes, and plans. Collaborative members are now developing draft processes for nomination, evaluation, and evidence review. Future meetings and opportunities for public engagement will be shared as they are formulated.
Membership
NBSC Members:
Cynthia Powell, MD (Chair)
American College of Medical Genetics and Genomics (ACMG)
Jerry Vockley, MD, PhD (Vice Chair)
American College of Medical Genetics and Genomics (ACMG)
Amy Gaviglio, MS, CGC
National Society of Genetic Counselors (NSGC)
Susan Tanksley, PhD
Association of Public Health Laboratories (APHL)
Debra Freedenberg, MD, PhD
American Academy of Pediatrics (AAP)
Robert Ostrander, MD
American Academy of Family Physicians (AAFP)
Jeffrey Botkin, MD
Expert in Bioethics and Newborn Screening
Margie Ream, MD, PhD
Child Neurology Society (CNS)
Susan Berry, MD
Society for Inherited Metabolic Disorders (SIMD)
Natasha Bonhomme
Expecting Health
Marybeth McAfee, MA, GC
National Organization for Rare Disorders (NORD)
Asha Talati, MD
American College of Obstetricians and Gynecologists (ACOG)
Dieter Matern, MD, PhD
American College of Medical Genetics and Genomics (ACMG)
William Wilcox, MD, PhD
American College of Medical Genetics and Genomics (ACMG)
Mei Baker, MD
American College of Medical Genetics and Genomics (ACMG)
Administrative Support
Allison Herrity, MPH
Newborn Screening Collaborative Project Manager
NBSC@acmg.net
FAQs
Q: What is the NBSC?
A: The Newborn Screening Collaborative (NBSC) is a volunteer group of patient advocacy, public health, and healthcare professionals from a broad range of medical specialties whose mission is to support and promote activities to advance universal newborn screening and enhance the ability of U.S. newborn screening programs to keep pace with technological and therapeutic advancements.
Q: Why was the NBSC established?
A: The NBSC was established in 2025 following the dissolution of the federal Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC), the body that oversaw nominations to the Recommended Uniform Screening Panel (RUSP) and made recommendations to the Secretary of the Department of Health and Human Services regarding which conditions all newborns should be screened for at birth.
Q: What is the goal of the NBSC?
A: The NBSC seeks to fill a gap in the U.S. newborn screening system by conducting transparent, evidence-based reviews of specific conditions or categories of conditions to advise the public and newborn screening programs in the US about conditions for which every baby should be screened.
Q: What is the relationship between the ACMG and the NBSC?
A: The NBSC is coordinated by the ACMG with support by the ACMGF. The ACMG provides administrative and technical support to the NBSC, but does not direct nominations, discussion, or votes.
Q: Who are members of the NBSC?
A: The NBSC is made up of 15 patient advocacy, public health, and healthcare professionals from a broad range of medical specialties. Current membership can be found here.
Q: When does the NBSC meet?
A: The NBSC meets quarterly, with three virtual and one in-person meeting per year. The next NBSC meeting is an executive session scheduled for September 29, 2026.