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HR4709119th CongressWALLET

Newborn Screening Saves Lives Reauthorization Act of 2025

Sponsored By: Representative Morrison, Kelly [D-MN-3]

In Committee

Summary

Expanding and strengthening newborn screening and genomic research programs to improve follow-up care, lab performance, and data sharing for children and families.

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  • Families and children gain clearer education and outreach. Grants must fund parent-facing programs that cover counseling, testing (including newborn screening pilot studies), follow-up, treatment, specialty services, and long-term care and must re-engage patients who miss recommended follow-up.
  • State public health programs and laboratories get bigger surveillance and lab tools. The bill requires real-time data linkages, performance-evaluation services, and raises authorized funding from $11.9 million to $20.9 million and from $8.0 million to $22.3 million for program lines through 2030 to boost capacity and infrastructure.
  • Researchers and advisors face stricter requirements and more transparency. The Hunter Kelly Research Program is mandatory, pilots must be ready for use, grantees should consult state health departments, dried blood spot research is codified as secondary research, and the advisory committee gets expanded duties and consumer-facing nomination materials.

*Authorizes larger federal funding levels through 2030, increasing potential federal spending compared with current law.*

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Bill Overview

Analyzed Economic Effects

5 provisions identified: 5 benefits, 0 costs, 0 mixed.

Better lab tests and tracking

If enacted, this would strengthen laboratory quality and screening-test development. It would require performance evaluation services, tools for data analysis and harmonization, and sharing of best laboratory practices to improve disease detection. It would push for near real-time tracking from initial newborn screen through diagnosis and long-term care and encourage states to link screening data with birth-defect and developmental surveillance. Grant reviewers would be able to approve using grant money to build capacity and infrastructure to adopt these practices.

Required newborn screening research pilots

If enacted, this would make the Hunter Kelly Research Program mandatory and prioritize piloting reliable newborn screening technologies that are ready for use. Funded groups would need to provide assurances, as practicable, that they will consult State health departments. The bill would also designate research using nonidentified newborn dried blood spots as "secondary research" under federal rules, changing how IRBs and researchers treat such funded studies.

Clear newborn screening education for parents

If enacted, this would require federal educational programs for parents, families, and patient groups about newborn screening. Programs would have to cover counseling, testing (including pilot studies), follow-up, treatment, specialty services, and long-term care. Materials would have to match audience knowledge, use health communication strategies, be literacy-appropriate, measure impact, and include efforts to re-engage people who miss recommended follow-up.

Clearer advisory rules and coordination

If enacted, this would expand the federal Advisory Committee's duties and require consumer-facing explanations of the uniform screening panel nomination process. It would require disclosure of when technical assistance is available and when it could create a conflict of interest. The bill would also update two Advisory Committee date references to 2030 and change clearinghouse wording to say it should 'complement' other federal newborn screening information activities.

More federal grants for screening

If enacted, this would raise authorized grant amounts for newborn screening programs. Paragraph (1) would be authorized at $20,883,000 and paragraph (2) at $22,250,000. The bill would update the statutory year references to 2026 and extend authorizations through 2030. These are authorizations only; actual spending would depend on future appropriations and grant awards.

Sponsors & CoSponsors

Sponsor

Morrison, Kelly [D-MN-3]

MN • D

Cosponsors

  • Rep. Simpson, Michael K. [R-ID-2]

    ID • R

    Sponsored 7/23/2025

  • Rep. Schrier, Kim [D-WA-8]

    WA • D

    Sponsored 7/23/2025

  • Rep. Langworthy, Nicholas A. [R-NY-23]

    NY • R

    Sponsored 7/23/2025

  • Rep. Stanton, Greg [D-AZ-4]

    AZ • D

    Sponsored 8/15/2025

  • Rep. Lawler, Michael [R-NY-17]

    NY • R

    Sponsored 1/21/2026

  • Rep. Auchincloss, Jake [D-MA-4]

    MA • D

    Sponsored 4/14/2026

  • Rep. Budzinski, Nikki [D-IL-13]

    IL • D

    Sponsored 8/31/2026

Roll Call Votes

No roll call votes available for this bill.

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