United States 113th Congress Status: Enacted 1 D cosponsors

HR 1281 — Newborn Screening Saves Lives Reauthorization Act of 2014

Last action — Became Public Law No: 113-240.

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  1. ✓
    Introduced
  2. ✓
    In Committee
  3. ✓
    Passed House
  4. ✓
    Passed Senate
  5. ✓
    To Executive
  6. 6
    Enacted

This bill has been enacted into law. Introduced March 20, 2013. Enacted.

Summary

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.

Bill Text

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Read HR 1281 on the official United States source →

Action History

  1. Became Public Law No: 113-240.

  2. Signed by President.

  3. Presented to President.

  4. Motion to reconsider laid on the table Agreed to without objection.

  5. On motion that the House agree to the Senate amendment Agreed to without objection. (text as House agreed to Senate amendment: CR H8994-8998)

  6. Mrs. Ellmers asked unanimous consent that the House agree to the Senate amendment. (consideration: CR H8994-8998)

  7. Message on Senate action sent to the House.

  8. Passed Senate with an amendment by Unanimous Consent.

  9. S.AMDT.3976 Amendment agreed to in Senate by Unanimous Consent.

  10. S.AMDT.3976 Amendment SA 3976 proposed by Senator Reid for Senator Paul. (consideration: CR S6395; text: CR S6395)To clarify the rules relating to newborn screening research and informed consent.

  11. Measure laid before Senate by unanimous consent. (consideration: CR S6395)

  12. Received in the Senate, read twice.

  13. On motion to suspend the rules and pass the bill, as amended Agreed to by voice vote. (text: CR H5696-5697)

  14. DEBATE - The House proceeded with forty minutes of debate on H.R. 1281.

  15. Considered under suspension of the rules. (consideration: CR H5696-5699)

  16. Mr. Pitts moved to suspend the rules and pass the bill, as amended.

  17. Placed on the Union Calendar, Calendar No. 354.

  18. Reported (Amended) by the Committee on Energy and Commerce. H. Rept. 113-478.

  19. Ordered to be Reported (Amended) by Unanimous Consent.

  20. Committee Consideration and Mark-up Session Held.

  21. Forwarded by Subcommittee to Full Committee (Amended) by Voice Vote .

  22. Subcommittee Consideration and Mark-up Session Held.

  23. Referred to the Subcommittee on Health.

  24. Referred to the House Committee on Energy and Commerce.

  25. Sponsor introductory remarks on measure. (CR H1643)

Sponsors

Sponsorship breakdown

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1 sponsors · 0 co-sponsors · 546 not signed on

Sponsors (1)

Co-sponsors (0)

None.

Not signed on (546)

546 members have not signed on to this bill.

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"Not signed on" means a member has not sponsored or co-sponsored this bill — it does not imply opposition. Members flagged Voted No have a recorded No vote on this bill.

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Subjects

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Frequently asked questions

What does HR 1281 do?
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.
Who sponsors HR 1281?
HR 1281 is sponsored by Lucille Roybal-Allard (D).
What is the current status of HR 1281?
This bill has been enacted into law. Introduced March 20, 2013. Enacted.
Where can I track HR 1281?
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