Bill > HR4709

This bill, called the "Newborn Screening Saves Lives Reauthorization Act of 2025," proposes several updates to existing public health laws regarding newborn screening for genetic disorders. The bill aims to improve newborn and child screening by expanding educational programs for parents and families about screening, testing, treatment, and long-term care, and enhancing the ability to re-engage patients who have not received recommended follow-up services. It extends the authorization of the Advisory Committee on Heritable Disorders in Newborns and Children through 2030 and requires the committee to develop consumer-friendly materials about the screening panel nomination process and provide guidance on genetic testing. The bill increases funding for newborn screening programs, raising appropriations from $11.9 million to $20.883 million and from $8 million to $22.25 million for different program components, with funding periods extended to 2030. Additionally, the bill updates laboratory quality and surveillance activities, including standardizing data collection and promoting data sharing between state newborn screening and birth defects programs. The legislation also modifies the Hunter Kelly Research Program to ensure more robust research into newborn screening technologies and requires researchers to consult with state health departments. Lastly, the bill clarifies that research on nonidentified newborn blood spots will be considered secondary research for federally funded studies.

Business and Industry, Health and Social Services

https://www.congress.gov/bill/119th-congress/house-bill/4709/all-info