‘Newborn Screening Saves Lives Act of 2007’

by Kimberly on August 5, 2009

I was talking to my mother when she told me about this bill.  So I went and looked it up on the internet.  I guess I’m not surprised that no ONE herd about it.  But I am surprised that it was passed.  Talk about taking parent rights away from them.  This is scary stuff.  This is what the bill is.

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 genetic test results nationwide.
  • Build surveillance systems for tracking the health status and health outcomes of individuals diagnosed at birth with a genetic defect or trait.
  • Use the newborn screening program as an opportunity for government agencies to identify, list, and study “secondary conditions” of individuals and their families.
  • Subject citizens to genetic research without their knowledge or consent.

The title of the bill seems like it would help people decide the “right” care for their new born child.  But that wouldn’t happen as it does not give the parents any choice in the matter.

Here are some other sites that talk about this bill that was passed.

A Critical Analysis of the Implications for Genetic Privacy and Consent Rights in Congress’ Proposed ‘Newborn Screening Saves Lives Act of 2007’

This is a article done on www.blogtalkradio.com

S.1858: THE BILL NOBODY KNOWS ABOUT: NATIONAL DNA DATABANK

The Bill Nobody Noticed: National DNA Databank

Patty Donovan
Natural News
December 20, 2008

(NaturalNews) In April of 2008, President Bush signed into law S.1858 which allows the federal government to screen the DNA of all newborn babies in the U.S. This was to be implemented within 6 months meaning that this collection is now being carried out. Congressman Ron Paul states that this bill is the first step towards the establishment of a national DNA database.

S.1858, known as The Newborn Screening Saves Lives Act of 2007, is justified as a “national contingency plan” in that it represents preparation for any sort of public health emergency. The bill states that the federal government should “continue to carry out, coordinate, and expand research in newborn screening” and “maintain a central clearinghouse of current information on newborn screening… ensuring that the clearinghouse is available on the Internet and is updated at least quarterly”. Sections of the bill also make it clear that DNA may be used in genetic experiments and tests. Read the full bill: http://www.govtrack.us/

Twila Brase, president of the Citizens’ Council on Health Care warns that this new law represents the beginning of nationwide genetic testing. 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 genetic test results nationwide.
• Build surveillance systems for tracking the health status and health outcomes of individuals diagnosed at birth with a genetic defect or trait.
• Use the newborn screening program as an opportunity for government agencies to identify, list, and study “secondary conditions” of individuals and their families.
• Subject citizens to genetic research without their knowledge or consent.
Read her entire analysis of the implications of this bill here: http://www.cchconline.org/pdf/S_1858_NB…

Brase states that under this bill, “The DNA taken at birth from every citizen is essentially owned by the government, and every citizen becomes a potential subject of government-sponsored genetic research.” All 50 states are now routinely providing results of genetic screenings to the Department of Homeland Security and this bill will establish the legality of that practice plus include DNA.

Ron Paul has also vigorously argued against this bill making the following comments before the US House of Representatives:

“I cannot support legislation…that exceeds the Constitutional limitations on federal power or in any way threatens the liberty of the American people. I must oppose it.”

“S. 1858 gives the federal bureaucracy the authority to develop a model newborn screening program. Madame Speaker, the federal government lacks both the constitutional authority and the competence to develop a newborn screening program adequate for a nation as large and diverse as the United States. …”

“Those of us in the medical profession should be particularly concerned about policies allowing government officials and state-favored interests to access our medical records without our consent … My review of S. 1858 indicates the drafters of the legislation made no effort to ensure these newborn screening programs do not violate the privacy rights of parents and children, in fact, by directing federal bureaucrats to create a contingency plan for newborn screening in the event of a ‘public health’ disaster, this bill may lead to further erosions of medical privacy. As recent history so eloquently illustrates, politicians are more than willing to take, and people are more than willing to cede, liberty during times of ‘emergency.”

{ 3 comments… read them below or add one }

Beverly Fromal August 8, 2009 at 4:54 am

I am Kimberly’s mother. I just happened onto this site, by accident. When I saw the history channel about two weeks ago. At first I thought it sounded great. Being a recent kidney transplant patient. I first thought the idea was great. Growing transplant organs from ones own DNA would lessen the chances of rejection. Until I looked into the bill. The statement that got me. Was without permission or consent of the parent. Hospitals do not even have to inform parents. But this is what Germany did before they start to kill off people. What else can this bill do? What will it lead too? What will this information be used for? And as I understand it. Will be extended to include every US citizen in the United States. Also, why are they collecting my DNA without my consent? I for one, planned to work at repealing this bill. As every US citizen should. Is the fantasy of 1984 here? What next chip implanted in our bodies without our consent. Will there be a program to track us where ever we go? WHat a scary thought?

K. B. August 24, 2009 at 12:32 am

Are there any updates regarding organized efforts to repeal the Newborn Screening Act?

I don’t have an issue with an OPTION of screening, and in fact, think that it is a fantastic OPTION that has the potential to save lives.

However, I must protest, and with vigor, that this Act does not make such screening optional. There are NO consent requirements for testing under this Act. Further, and just as horrific, are the results are not the sole and private property of the parent/child. Once gathered, the DNA information can be used without further knowledge… and for unknown purposes.

Currently, there are not significant protections in place to prohibit future discrimination based on the DNA information of individuals. Until such protections are in place, such information should be carefully guarded and gathered only after the informed consent of parents.

Respectfully,
K.B.

admin August 24, 2009 at 8:10 am

I don’t think it has been repealed. The problem with this OPTION to save lives ist’s a government run program. If a person chooses to screen their child it should only be the decision of the Dr. and Parents not the government. Sad its not been repealed as far as I know.

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