U.S. Congress - H.R.3825 Newborn Screening Saves Lives Act of 2007
H.R.3825 - Newborn Screening Saves Lives Act of 2007
To amend the Public Health Service Act to establish grant programs to provide for education and outreach on newborn screening and coordinated followup care once newborn screening has been conducted, to reauthorize programs under part A of title XI of such Act, and for other purposes. view all titles (3)
All Bill Titles
- Official: To amend the Public Health Service Act to establish grant programs to provide for education and outreach on newborn screening and coordinated followup care once newborn screening has been conducted, to reauthorize programs under part A of title XI of such Act, and for other purposes. as introduced.
- Short: Newborn Screening Saves Lives Act of 2007 as introduced.
- Short: Newborn Screening Saves Lives Act of 2008 as reported to house.
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Official Summary
4/8/2008--Reported to House amended. Newborn Screening Saves Lives Act of 2008 - (Sec. 2) Amends the Public Health Service Act to authorize the Secretary of Health and Human Services, acting through the Administrator of the Health Resources and Services Administration (HRSA), to award granOfficial Summary
4/8/2008--Reported to House amended. Newborn Screening Saves Lives Act of 2008 -(Sec. 2)
Amends the Public Health Service Act to authorize the Secretary of Health and Human Services, acting through the Administrator of the Health Resources and Services Administration (HRSA), to award grants to eligible entities to:(1) provide screening, counseling, or health care services to newborns and children having or at risk for heritable disorders;
(2) provide education and training in newborn screening and congenital, genetic, and metabolic disorders to health care professionals and newborn screening laboratory personnel;
(3) develop and deliver educational programs about newborn screening, counseling, testing, follow-up, treatment, and specialty services to parents, families, and patient advocacy and support groups; and
(4) establish, maintain, and operate a system to assess and coordinate treatment relating to congenital, genetic, and metabolic disorders.
(Sec. 3)
Authorizes appropriations for FY2009-FY2013 for grants for demonstration programs 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.(Sec. 4)
Expands the duties of the Advisory Committee on Heritable Disorders in Newborns and Children to include:(1) making recommendations that include the heritable disorders for which all newborns should be screened;
(2) developing a model decision-matrix for newborn screening expansion; and
(3) considering ways to ensure that all states attain the capacity to screen for the recommended conditions. Sets forth deadlines for the Secretary to make a decision on Advisory Committee recommendations.
Requires the Advisory Committee to continue to operate during the five-year period beginning on the date of enactment of this Act.
(Sec. 5)
Requires the Secretary, acting through the Administrator, to establish and maintain a central clearinghouse of current information on newborn screening. Sets forth requirements for such clearinghouse, including:(1) ensuring that the clearinghouse is available on the Internet and is updated at least quarterly;
(2) providing links to websites that have expertise in newborn screening;
(3) providing information about newborn conditions and screening services available in each state;
(4) providing current research on conditions for which newborn screening tests are available; and
(5) providing the availability of federal funding for newborn and child screening for heritable disorders.
(Sec. 6)
Requires the Secretary, acting through the Director of the Centers for Disease Control and Prevention (CDC), to provide for:(1) quality assurance for screening laboratories; and
(2) appropriate quality control and other performance test materials to evaluate the performance of new screening tools.
Requires the Secretary to establish an Interagency Coordinating Committee on Newborn and Child Screening to make recommendations on:
(1) programs to collect, analyze, and make available data on certain heritable disorders; and
(2) the establishment of regional centers to conduct applied epidemiological research on effective interventions for preventing poor health outcomes resulting from such disorders and to provide information and education to the public on such effective interventions.
(Sec. 7)
Requires the Secretary, acting through the Director of CDC, to develop a national contingency plan for newborn screening in the event of a public health emergency. Authorizes the Secretary to continue to carry out, coordinate, and expand research in newborn screening (to be known as the Hunter Kelly Newborn Screening Research Program), including:(1) identifying, developing, and testing the most promising new screening technologies; and
(2) experimental treatments and disease management strategies for conditions that can be detected through newborn screening for which treatment is not yet available.
...Read the Rest
Recent News Coverage
What Legislature should -- and shouldn't -- do
It is ironic that on April 9, Congress finalized the Newborn Screening Saves Lives Act of 2008 (HR 3825/S. 1858). President Bush is expected to sign it. ...
Pro Football Hall of Fame Member Jim Kelly Urges Congress to ...
In the House of Representatives, the bill (HR 3825) was sponsored by Representatives Lucille Roybal-Allard (D-CA), Mike Simpson (R-ID), Tom Reynolds (R-NY), ...
UPDATE: Newborn Testing Bill passes House of Representatives
In the House of Representatives, the bill (HR 3825) was sponsored by Representatives Lucille Roybal-Allard (D-CA), Mike Simpson (R-ID), Tom Reynolds (R-NY), ...
Recent Blog Coverage
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The Bill Nobody Noticed: National DNA Databank « THE INTERNET POST
Brase states that S.1858 and H.R. 3825, the House version of the bill, will: ⢠Establish a national list of genetic conditions for which newborns and children are to be tested. ⢠Establish protocols for the linking and sharing of ...
La loi qui a passé sans faire de bruit : La banque nationale dâADN ...
Brase nous annonce aussi que les lois S.1858 et H.R.3825 :. - établiront la liste des conditions nationales auxquelles les tests des nouveaux-nés seront limités ; - établiront les protocoles pour le partage des données ; ...
Less is more: Baby's DNA now stored in National Database - It's ...
Brase states that S.1858 and H.R. 3825, the House version of the bill, will:. ⢠Establish a national list of genetic conditions for which newborns and children are to be tested. ⢠Establish protocols for the linking and sharing of ...
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