Critical Juncture for Newborn Screening in the United States

In April 2025, the U.S. Department of Health and Human Services (HHS) eliminated a key committee in the national newborn screening system, the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). The ACHDNC is responsible for assessing scientific evidence and recommending new policies and conditions for nationwide newborn screening. In the absence of the ACHDNC, no formal process exists for reviewing and recommending new conditions nationwide. In this article, I examine the implications of the committee's termination and consider possible policy pathways to fill the resulting gap, including a model proposed in a recent National Academies of Sciences, Engineering, and Medicine report. These policy considerations are occurring during a time of major restructuring within HHS in terms of shifting priorities, organizational realignment, and budget debates. Nurses can play a vital role in shaping newborn screening policy through advocacy, collaboration, and education.