Bush Signs Bill to Take all Newborn Babies "DNA"

[WaTcHeR]

May 03 2008 - President Bush signs Bill to Take all Newborns’ DNA


President Bush last week signed into law a bill which will see the federal government begin to screen the DNA of all newborn babies in the U.S. within six months, a move critics have described as the first step towards the establishment of a national DNA database.

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.

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:

"I cannot support legislation, no matter how much I sympathize with the legislation’s stated goals, that exceed the Constitutional limitations on federal power or in any way threatens the liberty of the American people. Since S. 1858 violates the Constitution, and may have untended consequences that will weaken the American health care system and further erode medical privacy, I must oppose it."

Paul, a medical doctor himself continued, "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," Paul continued.

"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," he concluded.


http://bellaciao.org/en/spip.php?article16908

[WaTcHeR]

Texas lawmakers likely to tighten control over baby blood samples

Legislative committee airs concerns about state's use of newborn blood spots, including trading samples with companies for lab supplies.

Texas parents could get more information and more control over their babies' blood samples including the right to own those samples after the state tests the blood for 28 disorders, lawmakers indicated at a hearing Monday.

For more than four hours, the House Committee on Public Health questioned officials with the Department of State Health Services and heard concerns from parents and others about the state's handling of blood spots once screening tests are completed. Lawmakers said they want to tighten the rules for the handling of the spots used in research, missing persons cases, laboratory equipment evaluation, lab test development and confirmation of the accuracy of those tests.

Committee members said they were not happy to learn from the media that blood spots were being traded with some companies for laboratory supplies and had on occasion been sold to companies that make lab tests, even though infants' names were not attached to the spots. They also were upset that 800 anonymous blood spots went to the Armed Forces Institute of Pathology in 2003 and 2007 to help create an international database for law enforcement and missing persons cases.

"Financial banks, you give them your money and you expect certain things \u2026 and yet when we're talking about blood spots and DNA retention, I don't think we have developed the policy and the protections people really deserve at this point," said committee Chairwoman Lois Kolkhorst, R-Brenham. "That is not the fault of the agency. It is just that we are very quiet in the law about this."

State law is fuzzy on who owns the blood taken from almost every Texas newborn, about 400,000 a year, she said. Although officials with the state health department have said the state owns them, Kolkhorst said future legislation could make the spots personal property.

The committee also raised concerns about forms that inform parents of the blood spot storage program and allow them to opt out. The forms — in use since August under a law passed last year — do not explain the trading of anonymous spots for equipment, nor do they explain that department officials plan to retain spots for 25 years.

Rep. Susan King, R-Abilene, said the forms refer overwhelmed new parents to a website, which is "absurd." Further, she said, "I don't see anywhere on this form where you are asking for consent."

The nation is wrestling with the use of stored blood spots, and Texas is trying to be more transparent, said David Lakey, the state health commissioner. He said a proposed policy for handling spots won't allow law enforcement uses.

"We are open to input. We are evaluating this program, and we are trying to strengthen this program," he said.

While the committee said it strongly supports newborn screening tests, which save hundreds of Texas babies every year, they want parents to be better educated. Until last year, state law did not require that parents be informed before screening blood was drawn, nor is consent required to have blood stored indefinitely.

In March 2009, the Texas Civil Rights Project sued the state over storing the blood, charging "unlawful search and seizure." The suit was settled in December when the state agreed to destroy 5.3 million spots that had been stored from July 2002 to May 27, 2009.

Did the Legislature, by passing that law, unwittingly legalize the sale of "newborns' DNA to all the different sources (when) we had no idea this was going on?" Jodie Laubenberg, R-Parker, asked.

Blood spots are exchanged with companies to make sure tests are done accurately, Lakey said. Under the proposed policy, he would approve any requests for samples sent outside the agency, he said.

Committee Vice Chairman Elliott Naishtat, D-Austin , said he prefers an "opt-in" process for parents before storing blood, unlike the department, which prefers the current opt-out process.

Naishtat also raised concerns about the scientific panel that would review requests for research under the proposed policy. Twelve of the 13 members are health department staff members, but Naishtat and other lawmakers said the committee should have outsiders.

At times, lawmakers expressed frustration when they could not get clear answers, including about the disclosure form.

"Do you all understand why we're are concerned up here?" Laubenberg asked. "There seems to be this push-back on this most intimate information of a person's life."



http://www.statesman.com/news/texas-pol ... 93740.html

[WaTcHeR]

If Rep. Lois Kolkhorst was a true American, she would say that the property belongs to that individual and not the government or some third party.

If Lois Kolkhorst, cared that much about the citizens of Texas why is she waiting this long to do something about this?