Newborn Screening Saves Lives Reauthorization Act of 2025
Sponsored By: Representative Morrison
In Committee
Summary
Strengthen and expand newborn screening programs. This bill would reauthorize and broaden federal newborn screening efforts, boosting parent education, lab quality, program surveillance, pilot testing, and research rules for nonidentified newborn biospecimens.
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- Families and patients: Parents and patient groups would get expanded, literacy‑appropriate education and counseling on screening, follow-up, treatment, specialty services, and long‑term care, with materials assessed for impact.
- State programs and laboratories: State newborn screening programs would gain stronger lab quality measures, updated test performance materials, expanded performance evaluation services, and real‑time surveillance links to birth defects and developmental disabilities systems to track outcomes.
- Research, pilots, and governance: The Hunter Kelly research program would emphasize piloting reliable screening technologies in consultation with States, and research on nonidentified newborn dried blood spots would be treated as secondary research with new governance rules; authorized grant levels rise to about $20.9 million and $22.3 million for two grant streams.
*Would authorize higher federal funding, raising annual authorized grants to about $20.9 million and $22.3 million and increasing federal spending for newborn screening activities.*
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Bill Overview
Analyzed Economic Effects
5 provisions identified: 5 benefits, 0 costs, 0 mixed.
More newborn screening help for families
If enacted, families would get clearer education on newborn screening, testing, follow-up, treatment, and long-term care. Programs would need to check what parents know, use plain-language materials, and measure results. States would also try to re-engage families who miss recommended follow-up. The federal advisory committee would post easy-to-read steps to nominate conditions for screening and how to get technical help. It would also offer guidance on safe, appropriate genetic testing for newborns and children.
Faster development of new screening tests
If enacted, federal lab work would shift toward developing new newborn screening tests and sharing best practices. Performance evaluation would focus on better tools, data analysis, and clear test interpretation. The Hunter Kelly program would be required to support piloted technologies likely to be recommended for screening. Funded groups would, when practicable, consult with State health departments.
More funding for screening programs
If enacted, authorized federal funding levels would rise to $20.883 million (paragraph 1) and $22.25 million (paragraph 2). Grant recipients would also be able to use funds to build capacity and infrastructure to adopt recommended guidelines and practices.
Real-time newborn screening tracking
If enacted, CDC would coordinate real-time tracking of newborn screening using electronic health records. States would link screening data with birth defects and disability programs to help families get services and check long-term outcomes. The national clearinghouse would need to complement other federal information-sharing efforts.
Clear rules for blood spot research
If enacted, research on nonidentified newborn dried blood spots would be treated as secondary research under federal rules (45 C.F.R. 46.104(d)(4)). This would clarify how federally funded studies can use these samples.
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Sponsors & CoSponsors
Sponsor
Morrison
MN • D
Cosponsors
Simpson
ID • R
Sponsored 7/23/2025
Schrier
WA • D
Sponsored 7/23/2025
Langworthy
NY • R
Sponsored 7/23/2025
Stanton
AZ • D
Sponsored 8/15/2025
Lawler
NY • R
Sponsored 1/21/2026
Auchincloss
MA • D
Sponsored 4/14/2026
Roll Call Votes
No roll call votes available for this bill.
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