H.R. 1281: Newborn Screening Saves Lives Reauthorization Act of 2014

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H.R. 1281: Newborn Screening Saves Lives Reauthorization Act of 2014

113th Congress · introduced 2013-03-20 · Health · Latest: Became Public Law No: 113-240.

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Official title

Newborn Screening Saves Lives Reauthorization Act of 2014

Plain summary

(This measure has not been amended since it was passed by the Senate on December 8, 2014. The summary of that version is repeated here.) Newborn Screening Saves Lives Reauthorization Act of 2014 - (Sec. 2) Amends the Public Health Service Act to revise and extend through FY2019 a grant program for screening, counseling, and other services related to heritable disorders that can be detected in newborns. Allows grants to be used to improve timeliness of newborn screening and provide training to health care professionals on the importance of timely screening and on the sharing of medical and diagnostic information with providers and families. (Sec. 3) Extends through FY2019 a grant program to evaluate the effectiveness of screening, counseling, or health care services in reducing the morbidity and mortality caused by heritable disorders in newborns and children. Expands the program to include evaluation of health outcomes through adolescence and best practices for timely screening of newborns. (Sec. 4) Extends for five years the operation of the Advisory Committee on Heritable Disorders in Newborns and Children. Authorizes the Secretary of Health and Human Services (HHS) to continue the Advisory Committee after such time. (Sec. 5) Extends through FY2019 the clearinghouse for newborn screening information. Expands the duties of the clearinghouse to include: (1) maintaining current information on the number of conditions for which screening is conducted in each state; and (2) disseminating guidelines for diagnosis, counseling, and treatment of conditions detected by newborn screening. (Sec. 6) Extends through FY2019 requirements for the Director of the Centers for Disease Control and Prevention (CDC) to provide for quality assurance of laboratories involved in screening newborns and children for heritable disorders. Authorizes the Director to coordinate surveillance activities, including through standardized data collection and reporting and electronic health records. (Sec. 7) Makes permanent the Interagency Coordinating Committee on Newborn and Child Screening. Adds the Administrator of the Health Resources and Services Administration and the Commissioner of Food and Drugs (FDA) to this committee. (Sec. 8) Requires the Director to update the national contingency plan for newborn screening at least every five years. (Sec. 9) Authorizes the Secretary to expand the Hunter Kelly Newborn Screening Research Program to: (1) provide research and data for newborn conditions under review by the Advisory Committee to be added to the Recommended Uniform Screening Panel, and (2) conduct pilot studies on conditions recommended by the Advisory Committee to ensure that screenings are ready for nationwide implementation. (Sec. 11) Requires the Comptroller General (GAO) to report on the timeliness of newborn screening. Requires the Secretary to report on newborn screening activities and expenditures. (Sec. 12) Directs HHS to update the Federal Policy for the Protection of Human Subjects, also known as the Common Rule, not later than two years after enactment of this Act. Applies the following provisions until HHS updates the Common Rule: requires federally funded research on newborn dried blood spots to be considered research on human subjects (which requires the informed consent of the subject), and eliminates the ability of an institutional review board to waive informed consent requirements for research on newborn dried blood spots.

Congressional Research Service summary (Public Law), quoted unchanged (nonpartisan). Read the source.

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Officials and money

Sponsor: Rep. Roybal-Allard, Lucille [D-CA-40] · 120 cosponsors

Cost estimate: No cost estimate published yet.

Cosponsors on this site

Michael K. Simpson (R-ID), Gwen Moore (D-WI), Harold Rogers (R-KY), James P. McGovern (D-MA), Betty McCollum (D-MN), Yvette D. Clarke (D-NY), Jared Huffman (D-CA), Rosa L. DeLauro (D-CT), Steve Cohen (D-TN), Sanford D. Bishop, Jr. (D-GA), Kathy Castor (D-FL), Mark Takano (D-CA), Frederica S. Wilson (D-FL), Ami Bera (D-CA), Jerrold Nadler (D-NY), Mark Pocan (D-WI), Joyce Beatty (D-OH), Janice D. Schakowsky (D-IL), Jim Costa (D-CA), Raul Ruiz (D-CA), Joaquin Castro (D-TX), Ben Ray Luján (D-NM), Juan Vargas (D-CA) and 60 more.

No linked floor roll calls in our collected records yet. This does not mean the bill has never had a vote. Check the official bill history.

Sources

• Congressional Research Service summary (Public Law)
• Congress.gov
• Data: GovInfo BILLSTATUS bulk data (Library of Congress), BILLSTATUS-113hr1281.xml <https://www.govinfo.gov/bulkdata/BILLSTATUS/113/hr>

Record fed-us-cong113-hr1281 · catalog fed-us-congress-bills-cong113 · updated 2026-11-15 by psicol fed-bills-cong113