Spreeha Choudhury and Richard H. Hughes, IV, attorneys in the Health Care & Life Sciences practice, co-authored an article in Health Affairs, titled “Newborn Screening at Risk: Implications of Disbanding the Advisory Committee on Heritable Disorders in Newborns and Children.”
Following is an excerpt:
The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) served as the cornerstone of a structured, science-driven process that kept newborn screening aligned with the latest medical and technological advances. But after its February 2025 meeting was abruptly postponed, the Trump Administration officially disbanded the committee in April.
This move eliminates the only federal body responsible for evaluating evidence and recommending new conditions for nationwide screening, leaving a gap in the system for early detection and treatment of conditions in thousands of newborns each year.
The ACHDNC’s Two-Decade Role in Guiding Newborn Screening
For over 20 years, the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) served as the federal linchpin for U.S. newborn screening policy.
Before its creation in 2003, newborn screening was highly inconsistent—some states screened for as few as four conditions, while others screened for up to 50. There was no uniform national process to evaluate which conditions should be included, leading to wide variation and uneven protection for infants. In response, the federal government tasked the American College of Medical Genetics (ACMG) with developing national guidelines. ACHDNC worked closely with ACMG to bring scientific rigor, transparency, and coordination to this previously fragmented system.
The committee was formally authorized and funded in 2008 under the Newborn Screening Saves Lives Act, which expanded federal support for newborn screening programs and charged the ACHDNC with recommending conditions for national screening.
