US HB1281 | 2013-2014 | 113th Congress

Status

Completed Legislative Action
Spectrum: Moderate Partisan Bill (Democrat 102-18-1)
Status: Passed on December 18 2014 - 100% progression
Action: 2014-12-18 - Became Public Law No: 113-240.
Text: Latest bill text (Enrolled) [PDF]

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.

Tracking Information

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Title

Newborn Screening Saves Lives Reauthorization Act of 2014

Sponsors

Rep. Lucille Roybal-Allard [D-CA]Rep. Joe Barton [R-TX]Rep. Joyce Beatty [D-OH]Rep. Xavier Becerra [D-CA]
Rep. Ami Bera [D-CA]Rep. Sanford Bishop [D-GA]Rep. Earl Blumenauer [D-OR]Rep. Julia Brownley [D-CA]
Rep. Michael Burgess [R-TX]Rep. Ken Calvert [R-CA]Sen. Shelley Capito [R-WV]Rep. Lois Capps [D-CA]
Rep. Tony Cardenas [D-CA]Rep. Matthew Cartwright [D-PA]Rep. Kathy Castor [D-FL]Rep. Joaquin Castro [D-TX]
Rep. Donna Christensen [D-VI]Rep. David Cicilline [D-RI]Rep. Yvette Clarke [D-NY]Rep. Lacy Clay [D-MO]
Rep. Steve Cohen [D-TN]Rep. Chris Collins [R-NY]Rep. John Conyers [D-MI]Rep. Jim Costa [D-CA]
Rep. Joe Courtney [D-CT]Rep. Joseph Crowley [D-NY]Rep. Danny Davis [D-IL]Rep. Diana DeGette [D-CO]
Rep. John Delaney [D-MD]Rep. Rosa DeLauro [D-CT]Rep. John Dingell [D-MI]Rep. Michael Doyle [D-PA]
Rep. Donna Edwards [D-MD]Rep. Keith Ellison [D-MN]Rep. Anna Eshoo [D-CA]Rep. Elizabeth Esty [D-CT]
Rep. Sam Farr [D-CA]Rep. Pete Gallego [D-TX]Rep. John Garamendi [D-CA]Rep. Joe Garcia [D-FL]
Rep. Kay Granger [R-TX]Rep. Alan Grayson [D-FL]Rep. Gene Green [D-TX]Rep. Raul Grijalva [D-AZ]
Rep. Luis Gutierrez [D-IL]Rep. Alcee Hastings [D-FL]Rep. Denny Heck [D-WA]Rep. Brian Higgins [D-NY]
Rep. Ruben Hinojosa [D-TX]Rep. Michael Honda [D-CA]Rep. Jared Huffman [D-CA]Rep. Steve Israel [D-NY]
Rep. Sheila Jackson-Lee [D-TX]Rep. Eddie Johnson [D-TX]Rep. Henry Johnson [D-GA]Rep. Walter Jones [R-NC]
Rep. Peter King [R-NY]Rep. Ann Kirkpatrick [D-AZ]Rep. Leonard Lance [R-NJ]Rep. James Langevin [D-RI]
Rep. John Larson [D-CT]Rep. Tom Latham [R-IA]Rep. Barbara Lee [D-CA]Rep. Sander Levin [D-MI]
Rep. Daniel Lipinski [D-IL]Rep. David Loebsack [D-IA]Rep. Alan Lowenthal [D-CA]Rep. Nita Lowey [D-NY]
Rep. Michelle Lujan Grisham [D-NM]Sen. Ben Lujan [D-NM]Rep. Jim Matheson [D-UT]Rep. Doris Matsui [D-CA]
Rep. Betty McCollum [D-MN]Rep. Jim McDermott [D-WA]Rep. James McGovern [D-MA]Rep. Howard McKeon [R-CA]
Rep. Cathy McMorris Rodgers [R-WA]Rep. Gregory Meeks [D-NY]Rep. Michael Michaud [D-ME]Rep. Gary Miller [R-CA]
Rep. Gwen Moore [D-WI]Rep. James Moran [D-VA]Rep. Jerrold Nadler [D-NY]Rep. Grace Napolitano [D-CA]
Rep. Richard Neal [D-MA]Rep. Gloria Negrete McLeod [D-CA]Rep. Devin Nunes [R-CA]Rep. Frank Pallone [D-NJ]
Rep. Bill Pascrell [D-NJ]Rep. Donald Payne [D-NJ]Rep. Pedro Pierluisi [N-PR]Rep. Mark Pocan [D-WI]
Rep. Charles Rangel [D-NY]Rep. Harold Rogers [R-KY]Rep. Edward Royce [R-CA]Rep. Raul Ruiz [D-CA]
Rep. Tim Ryan [D-OH]Rep. Gregorio Sablan [D-MP]Rep. Loretta Sanchez [D-CA]Rep. Janice Schakowsky [D-IL]
Rep. Adam Schiff [D-CA]Rep. Allyson Schwartz [D-PA]Rep. David Scott [D-GA]Rep. Jose Serrano [D-NY]
Rep. Carol Shea-Porter [D-NH]Rep. Michael Simpson [R-ID]Rep. Albio Sires [D-NJ]Rep. Louise Slaughter [D-NY]
Rep. Jackie Speier [D-CA]Rep. Mark Takano [D-CA]Rep. Mike Thompson [D-CA]Rep. John Tierney [D-MA]
Rep. Dina Titus [D-NV]Rep. Paul Tonko [D-NY]Rep. Juan Vargas [D-CA]Rep. Nydia Velazquez [D-NY]
Rep. Greg Walden [R-OR]Rep. Debbie Wasserman Schultz [D-FL]Rep. Henry Waxman [D-CA]Sen. Peter Welch [D-VT]
Rep. Frederica Wilson [D-FL]

History

DateChamberAction
2014-12-18SenateBecame Public Law No: 113-240.
2014-12-18SenateSigned by President.
2014-12-12SenatePresented to President.
2014-12-10SenateMotion to reconsider laid on the table Agreed to without objection.
2014-12-10SenateOn motion that the House agree to the Senate amendment Agreed to without objection. (text as House agreed to Senate amendment: CR H8994-8998)
2014-12-10SenateMrs. Ellmers asked unanimous consent that the House agree to the Senate amendment. (consideration: CR H8994-8998)
2014-12-09SenateMessage on Senate action sent to the House.
2014-12-08SenatePassed Senate with an amendment by Unanimous Consent.
2014-12-08SenateS.AMDT.3976 Amendment agreed to in Senate by Unanimous Consent.
2014-12-08SenateS.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.
2014-12-08SenateMeasure laid before Senate by unanimous consent. (consideration: CR S6395)
2014-06-25SenateReceived in the Senate, read twice.
2014-06-24HouseOn motion to suspend the rules and pass the bill, as amended Agreed to by voice vote. (text: CR H5696-5697)
2014-06-24HouseDEBATE - The House proceeded with forty minutes of debate on H.R. 1281.
2014-06-24HouseConsidered under suspension of the rules. (consideration: CR H5696-5699)
2014-06-24HouseMr. Pitts moved to suspend the rules and pass the bill, as amended.
2014-06-19HousePlaced on the Union Calendar, Calendar No. 354.
2014-06-19HouseReported (Amended) by the Committee on Energy and Commerce. H. Rept. 113-478.
2014-04-03HouseOrdered to be Reported (Amended) by Unanimous Consent.
2014-04-03HouseCommittee Consideration and Mark-up Session Held.
2014-02-27HouseForwarded by Subcommittee to Full Committee (Amended) by Voice Vote .
2014-02-27HouseSubcommittee Consideration and Mark-up Session Held.
2013-03-22HouseReferred to the Subcommittee on Health.
2013-03-20HouseReferred to the House Committee on Energy and Commerce.
2013-03-20HouseSponsor introductory remarks on measure. (CR H1643)

Subjects


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Bill Comments

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