National “DNA warehouse” bill passes

[Steve Gardner]

This is the sort of thing that scares the hell out of me - more because of the sort of world we're creating for our children that for any personal concern.

Disguised, no doubt, as being in the 'national interest' or being necessary to 'counter the threat of terrorism', this bill has profound consequences and I sincerely hope someone somehow finds a way of stopping it.

A summary of the bill, together with a link to the bill itself, follows the article.

Source: RINF

Passing the House of Representatives on a voice vote, S. 1858 has been sent to President Bush for signature. The Newborn Genetic Screening bill was passed by the Senate last December. The bill violates the U.S. Constitution and the Nuremberg Code, writes Twila Brase, president of the Citizen’s Council on Health Care (CCHC). “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,” she states. “It does not require consent and there are no requirements to inform parents about the warehousing of their child’s DNA for the purpose of genetic research. Already, in Minnesota, the state health department reports that 42,210 children of the 780,000 whose DNA is housed in the Minnesota ‘DNA warehouse’ have been subjected to genetic research without their parents’ knowledge or consent.”The federal government lacks the Constitutional authority as well as the competence to develop a newborn screening program, states Rep. Ron Paul, M.D. (R-TX). He states that all hospitals will probably scrap their own newborn testing program and adopt the federal model, whatever its flaws, to avoid the loss of federal funding.

“Drafters of the legislation made no effort to ensure that these newborn screening programs do not violate the privacy rights of parents and children,” Dr. Paul noted.

Ms. Brase has called on President Bush to veto the bill.

Summary of S. 1858: Newborn Screening Saves Lives Act of 2007 (source: GovTrack). Full Text

Section 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.

Section 3 -

Authorizes appropriations for FY2008-FY2012 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.

Section 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.

Section 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.

Section 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.

Section 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.