Described as a "national contingency plan" the justification for the new law S. 1858, known as The Newborn Screening Saves Lives Act of 2007, is 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 here.
One health care expert and prominent critic of DNA screening is Twila Brase, president of the Citizens' Council on Health Care who has written a detailed analysis (PDF) of the new law in which she warns that it represents the first program of populationwide 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.
"Soon, under this bill, the DNA of all citizens will be housed in government genomic biobanks and considered governmental property for government research," Brase writes. "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."
"The public is clueless. S. 1858 imposes a federal agenda of DNA databanking and population-wide genetic research. It does not require consent and there are no requirements to fully inform parents about the warehousing of their child's DNA for the purpose of genetic research."
In a previous report we outlined the consequences of the already existing DNA warehousing operation in Minnesota, a program that the Citizens' Council on Health Care has been following closely for a number of years.
Ms. Brase explained in a statement last month that state Health Department officials are now seeking exemption for the so called "DNA Warehouse" from Minnesota privacy law. This would enable state officials to continue to take the DNA of newborn infants without consent, which would also set the precedent for nationwide policy on DNA screening.
DNA of newborns has already been harvested, tested, stored and experimented with nationwide.
The National Conference of State Legislatures lists for all 50 states, as well as the District of Columbia, the various statutes or regulatory provisions under which newborns' DNA is already being collected.
In addition, all 50 states are now routinely providing these results to the Department of Homeland Security.
The Newborn Screening Saves Lives Act of 2007 merely establishes this practice within the law.
Another vocal critic of bill S. 1858 is Texas Congressman Ron Paul who made the following comments before the U.S. House of Representatives:
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