With virtually no fanfare, President Bush signed into law a plan ordering the government to take no more than six months to set up a "national contingency plan" to screen newborns' DNA in case of a "public health emergency."
The new law requires that the results of the program – including "information … research, and data on newborn screening" – shall be assembled by a "central clearinghouse" and made available on the Internet.
According to congressional records, S.1858, sponsored by Sen. Chris Dodd, D-Conn., was approved in the Senate Dec. 13, in the House April 8 and signed by Bush April 24.
"Soon, under this bill, the DNA of all citizens will be housed in government genomic biobanks and considered governmental property for government research," said Twila Brase, president of the Citizens' Council on Health Care. "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."
Brase has objected extensively to plans in Minnesota to provide state government the same option now handed to the federal government by Congress.
The bill, she said, strips "citizens of genetic privacy rights and DNA property rights. It bill also violates research ethics and the Nuremberg Code.
"The public is clueless. S. 1858 imposes a federal agenda of DNA databanking and population-wide genetic research," Brase continued. "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.
"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 parent's knowledge or consent," she said.
The federal plan sets up the coast-to-coast DNA collections then report the results to "physicians and families" as well as educate families about newborn screening.
"We now are considered guinea pigs, as opposed to human beings with rights," said Brase, warning such DNA databases could spark the next wave of demands for eugenics, the concept of improving the human race through the control of various inherited traits. Margaret Sanger, founder of Planned Parenthood, advocated eugenics to cull from the population types of people she considered unfit.
In 1921, Sanger said eugenics is "the most adequate and thorough avenue to the solution of racial, political and social problems," and she later lamented "the ever increasing, unceasingly spawning class of human beings who never should have been born at all."
Such DNA collection programs are offered as screening requirements to detect treatable illnesses. Currently, the type of tests conducted varies from state-to-state, but the Health Resources and Services Administration has requested a report that would "include a recommendation for a uniform panel of conditions." "Fortunately," Dodd said when his plan was launched, "some newborn screening occurs in every state. … This legislation will provide resources for states to expand their newborn screening programs."
U.S. Rep. Ron Paul, R-Texas, was one of the few voices to warn of the dangers. Before the plan's approval, he said, "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."
