What does Preamble of Newborn Screening Saves Lives Reauthorization Act of 2025 do?

This bill amends the Public Health Service Act to reauthorize certain programs. The reauthorization pertains to programs under part A of title XI of the Act. These programs relate to genetic diseases.

What does SHORT TITLE. of Newborn Screening Saves Lives Reauthorization Act of 2025 do?

This bill is formally titled the Newborn Screening Saves Lives Reauthorization Act of 2025.

What does IMPROVED NEWBORN AND CHILD SCREENING AND FOLLOW-UP FOR of Newborn Screening Saves Lives Reauthorization Act of 2025 do?

This section amends Section 1109 of the Public Health Service Act regarding newborn and child screening for heritable disorders. Amendments to paragraph (1) of Section 1109(a) modify language to 'facilitate, enhance, improve, or'. Paragraph (3) of Section 1109(a) is revised to require educational programs addressing newborn screening counseling, testing, follow-up, treatment, and long-term care. The revised paragraph (3) mandates that educational programs assess audience knowledge, incorporate health communications strategies, and be at appropriate literacy levels. Paragraph (4) of Section 1109(a) is amended to include re-engaging patients who have not received recommended follow-up services and supports. Section 1109(c) of the Public Health Service Act is amended to require grantees to use grant funds to enhance capacity and infrastructure to facilitate the adoption of guidelines and recommendations.

What does ADVISORY COMMITTEE ON HERITABLE DISORDERS IN NEWBORNS AND of Newborn Screening Saves Lives Reauthorization Act of 2025 do?

This section amends Section 1111 of the Public Health Service Act. The Advisory Committee on Heritable Disorders in Newborns and Children is required to adopt process improvements. The committee must develop, maintain, and publish consumer-friendly materials detailing the uniform screening panel nomination process and technical assistance procedures. The committee's responsibilities include outlining the appropriate use of genetic testing for newborns and children with genetic diseases. Paragraphs (8) and (9) of subsection (b) are redesignated. The dates in subsection (g) are updated from 2019 to 2030.

What does CLEARINGHOUSE OF NEWBORN SCREENING INFORMATION. of Newborn Screening Saves Lives Reauthorization Act of 2025 do?

This section amends Section 1112(c) of the Public Health Service Act. The amendment modifies language related to newborn screening information sharing activities. The phrase 'and supplement, not supplant, existing information sharing efforts' is removed. The phrase 'and complement other Federal newborn screening information sharing activities' is inserted.

What does LABORATORY QUALITY AND SURVEILLANCE. of Newborn Screening Saves Lives Reauthorization Act of 2025 do?

This section amends Section 1113 of the Public Health Service Act. It modifies subsection (a) to include 'development of new screening tests' and adds a new paragraph (3) focused on performance evaluation services to enhance disease detection. The added paragraph (3) emphasizes improving data analysis, test result interpretation, data harmonization, and dissemination of laboratory best practices. Subsection (b) outlines surveillance activities to be coordinated by the Secretary, through the Director of the Centers for Disease Control and Prevention. These activities include standardizing data collection and reporting for the newborn screening system using electronic health records. The section also promotes data sharing between newborn screening programs and birth defects/developmental disabilities surveillance programs to connect families with services.

What does HUNTER KELLY RESEARCH PROGRAM. of Newborn Screening Saves Lives Reauthorization Act of 2025 do?

This section amends Section 1116 of the Public Health Service Act. It changes the language in subsection (a)(1) from 'may' to 'shall'. Subparagraph (D) of subsection (a)(1) is modified to include 'or with a high probability of being recommended by' after 'recommended by'. The phrase 'that screenings are ready for nationwide implementation' is replaced with 'that reliable newborn screening technologies are piloted and ready for use'. Subsection (b) is revised to require entities receiving funding to provide assurances, as practicable, that they will consult with State departments of health.

What does AUTHORIZATION OF APPROPRIATIONS FOR NEWBORN SCREENING PROGRAMS of Newborn Screening Saves Lives Reauthorization Act of 2025 do?

This section amends Section 1117 of the Public Health Service Act. It increases the authorization of appropriations for newborn screening programs and activities. Paragraph (1) has its authorization increased to $20,883,000, with funding extended through 2030. Paragraph (2) has its authorization increased to $22,250,000, with funding extended through 2030.

What does INSTITUTIONAL REVIEW BOARDS; ETHICS GUIDANCE PROGRAM. of Newborn Screening Saves Lives Reauthorization Act of 2025 do?

This section amends Section 12 of the Newborn Screening Saves Lives Reauthorization Act of 2014. It clarifies that research on nonidentified newborn dried blood spots is considered secondary research. This applies to federally funded research conducted pursuant to the Public Health Service Act. The definition of secondary research is referenced from section 46.104(d)(4) of title 45, Code of Federal Regulations.

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Newborn Screening Saves Lives Reauthorization Act of 2025

Last updated: 9/10/2025 · Introduced: 7/23/2025

Author: Kelly Morrison (D-MN)

TL;DR (AI)

This bill reauthorizes programs under the Public Health Service Act related to genetic diseases, extending funding through 2030 and increasing authorized appropriations for newborn screening programs and activities.
The bill requires educational programs on newborn screening to assess audience knowledge, incorporate health communication strategies, and re-engage patients who miss recommended follow-up services.
To improve laboratory quality and disease detection, the bill mandates performance evaluation services, standardization of data collection using electronic health records, and data sharing between newborn screening and developmental disabilities surveillance programs.

119th Congressin committeeOfficial page

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Includes provisions on preamble, short title., and 7 more.

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