The American College of Medical Genetics and Genomics (ACMG) reaffirmed its dedication to protecting and developing the country’s newborn screening system by announcing that its Board of Directors has authorized the creation of a Newborn Screening Coalition. In the event that a federal advisory committee is not available, the action, which was authorized on September 29, 2025, guarantees continuity in the evidence-based assessment of genetic and congenital illnesses.
After the Health Resources and Services Administration (HRSA)-run Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) was disbanded in April 2025, ACMG President Mira B. Irons, MD, called a task force of ACMG members to create a procedure for continuing national oversight and assessment of possible additions to the Recommended Uniform Screening Panel (RUSP). More than 120 people attended a roundtable that the Taskforce organized with Cynthia Powell, MD, FACMG, as its chair to get input from the larger newborn screening community. The Taskforce recommended the creation of the Newborn Screening Coalition to the ACMG Board of Directors, and this response backed up that recommendation.
“ACMG has been deeply engaged in advancing newborn screening since its inception,” stated Dr. Irons. “This coalition will uphold the standards of evidence-based review and transparency that families, clinicians, and policymakers have come to expect, ensuring there is no interruption in progress toward improving early detection and treatment for newborns.”
The ACMG Newborn Screening Coalition will:
- Advise the public and newborn screening programs about potential conditions for inclusion on the RUSP.
- Develop and conduct evidence-based reviews of nominated conditions, open to public comment prior to the Coalition vote.
- Publish and disseminate recommendations, including rationale for both affirmative and negative votes.
- Foster collaboration across medical, laboratory, and public health communities to ensure equity and readiness in state newborn screening programs.
Fifteen voting members representing the fields of medicine, laboratory, public health, and patient advocacy will be part of the Coalition. In order to nominate a professional from their organization, the ACMG will be getting in touch with a few organizations soon.
Without a federal advisory body, the ACMG will administer the Coalition to maintain the evidence-based review and decision-making procedures. The ACMG Foundation for Genetic and Genomic Medicine is working with ACMG leadership to build a long-term sustainability business model, with the Coalition being launched in Q1 2026.
“Families and clinicians depend on timely and scientifically rigorous recommendations to guide newborn screening programs,” stated Dr. Powell. “This Coalition will provide a transparent, collaborative, and credible pathway for continuing that work.”
Disclaimer:
The information contained in this article is for educational and informational purposes only and is not intended as a health advice. We would ask you to consult a qualified professional or medical expert to gain additional knowledge before you choose to consume any product or perform any exercise.
