Newborn Screening Saves Lives Reauthorization Act of 2025

This bill renews and updates federal programs that help states screen newborns and some children for genetic and rare disorders. It puts more focus on clear parent education, stronger lab quality, and better data sharing so families can get faster answers and care .

Key points

• Who is affected: families of newborns and children; state newborn screening programs and labs; the CDC; health care providers; and researchers who use de-identified newborn dried blood spots .
• Parent and family education: expands plain-language materials about counseling, testing (including pilot studies), follow-up, treatment, and long-term care, designed at appropriate reading levels and checked for impact.
• Advisory committee: must publish consumer-friendly guides that explain how conditions are nominated for the uniform screening panel and how to get technical help, while avoiding conflicts of interest; it also offers advice on appropriate use of genetic testing in newborns and children after an initial diagnosis.
• Information sharing: the national clearinghouse is aligned to complement other federal information-sharing efforts, improving coordination rather than duplicating work.
• Lab quality and data tracking: supports developing new screening tests and tools to improve test accuracy and result interpretation; the CDC will coordinate national tracking, standardize data using electronic health records for real-time monitoring from the first positive screen through diagnosis and long-term care, and link state programs to help families find services .
• Research program: directs agencies to support research so reliable newborn screening technologies are piloted and ready to use, with grantees consulting state health departments as appropriate.
• Funding: continues federal funding for newborn screening programs and activities (amounts are set in the bill).
• Ethics and privacy: clarifies that research using nonidentified newborn dried blood spots is treated as “secondary research” with nonidentified samples under federal rules for public health research.