S. 1858 would 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.
Detailed Summary
<b>(This measure has not been amended since it was passed by the Senate on December 13, 2007. The summary of that version is repeated here, with changes reflecting enrollment corrections.)</b>
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.
Status of the Legislation
Latest Major Action: 4/14/2008: Presented to President.
Points in Favor
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Points Against
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Visitor Comments
Michael
Well, the bill passed the Senate. It's onto the House.
I see a lot of people voting against this bill but no comments as to why they are against this bill. I doubt many if any have taken the time to read the proposed bill.
Susan
Every newborn in the US is tested for PKU via a heel stick at birth. This bill simply mandates that 28 other disorders be tested for with the same one heel stick. These disorders are often fatal if not diagnosed early. This bill is vital to the well-being of newborns in the US.
Joel
The problem Susan is, "Without parental consent" and the constitution. Your assertion that this is "Vital to the well-being of new born in the US" is a remarkable assumption.
The fact is, without assertion or assumption, this violates our U.S. Constitution, The Supreme Law of The Land.
This is why many are against the bill that has just become Law. You guys really just don't get the concept of "Freedom" do you?
It's likely you in someway benefit from this either through healthcare or other based on your comments.
Aryaz
What will be done about false positive tests?
Michael
Joel,
How does this violate the Constitution? Which portion of the Constitution? Is this a penumbra's argument?
As for your "don't get the concept of 'Freedom' " argument, A baby receiving a heal-prick to determine if he/she has a catastrophic and deadly genetic disorder is easily a reasonable intrusion into whatever sort of "Constitutional Right" you find within the shadows and mirrors of your argument.
My daughter already has a terminal diagnosis so this bill will not benefit me or my family in the slightest. However, I am pleased to see that more screening is available that may benefit Americans in the future.
NLM
It isn't that they are testing newborns, it is that they are storing their DNA that boths me. Along with the fact that the parents have no say in the matter. No concent is needed. Where are our rights as citizens to have a choice.
Amendment IV
The right of the people to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures, shall not be violated, and no Warrants shall issue, but upon probable cause, supported by Oath or affirmation, and particularly describing the place to be searched, and the persons or things to be seized.
We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.
Charlie Judd
S. 1858 violates Art.1,9,7. "No money shall be drawn from the Treasury, but in Consequence of Appropriations made by Law..." Congress did not make law requiring DNA samples of newborns. That would violate Congress' authority. S. 1858 provides funding of public money to those entities who do take samples. In addition to violation as above, the bill violates the Separation of Powers Doctrine which is the basis of the Constitution. It is the same for example as China donating money to a presidential candidate.