HR4709119th CongressWALLET

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.

Show full summary
  • 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.*

Your PRIA Score

Score Hidden

Personalized for You

How does this bill affect your finances?

Sign up for a PRIA Policy Scan to see your personalized alignment score for this bill and every other piece of legislation we track. We analyze your financial profile against policy provisions to show you exactly what matters to your wallet.

Free to start

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.

Free Policy Watch

You just read the policy. Now see what it costs you.

Pick a topic. PRIA runs your household against live legislation and sends you a free personalized readout.

Pick a topic to get started

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.

View on Congress.gov

Live Policy Activity

Live

Surfaced from PRIA's policy knowledge graph — ranked by signal strength, connected by evidence.

Cached · 3 days ago1,439Wiki0 signals surfaced
Back to Legislation

Take It Personal

Get Your Personalized Policy View

Take the PRIA Score to see how policy affects your household, then upgrade to PRIA Full Coverage for year-round monitoring.

Already have an account? Sign in