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.”
So what’s the big deal about looking into DNA to hunt for various disease possibilities?
Nothing, said Brase, if that’s where the hunt would end.
However, she said, “researchers already are looking for genes related to violence, crime and different behaviors.”
“This isn’t just about diabetes, asthma and cancer,” she said. “It’s also about behavioral issues.”
“In England they decided they should have doctors looking for problem children, and have those children reported, and their DNA taken in case they would become criminals,” she said.
In fact, published reports in the UK note that senior police forensics experts believe genetic samples should be studied, because it may be possible to identify potential criminals as young as age 5.
In Britain, Chris Davis of the National Primary Headteachers’ Association warned the move could be seen “as a step towards a police state.”
Brase said efforts to study traits and gene factors and classify people would be just the beginning. What could happen through subsequent programs to address such conditions, she wondered.
“Not all research is great,” she said. Classifying of people could lead to “discrimination and prejudice. … People can look at data about you and make assessments ultimately of who you are.”
The Heartland Regional Genetics and Newborn Screening is one of the organizations that advocates more screening and research.
It proclaims in its vision statement a desire to see newborns screened for 200 conditions. It also forecasts “every student … with an individual program for education based on confidential interpretation of their family medical history, their brain imaging, their genetic predictors of best learning methods…”
Further, every individual should share information about “personal and family health histories” as well as “gene tests for recessive conditions and drug metabolism” with the “other parent of their future children.”
Still further, it seeks “ecogenetic research that could improve health, lessen disability, and lower costs for sickness.”
“They want to test every child for 200 conditions, take the child’s history and a brain image, and genetics, and come up with a plan for that child,” Brase said. “They want to learn their weaknesses and defects.
“Nobody including and especially the government should be allowed to create such extensive profiles,” she said.
The next step, said Brase, is obvious: The government, with information about potential health weaknesses, could say to couples, “We don’t want your expensive children.”
“I think people have forgotten about eugenics. The fact of the matter is that the eugenicists have not gone away. Newborn genetic testing is the entry into the 21st Century version of eugenics,” she said.
The Association of American Physicians and Surgeons has posted a position statement on the issue, noting that many good things can result from genetic testing.
However, it expressed two significant areas of concern.
“History shows that this information will sometimes be leaked or misused, regardless of who controls it. When private companies leak information and break people’s confidence, they have often been exposed and punished, as people no longer buy their services or sue. In contrast, when government agencies do the same, the guilty bureaucrats have often been protected and rewarded instead of suffering meaningful consequences,” the group said.
The AAPS said in order to do the best possible job of protecting privacy, anyone who has access to DNA data should be “individually liable in the event of unlawful disclosure of genetic testing information. …”
The other area of concern is equally significant.
“Genetic testing could be used for purposes found immoral in the Hippocratic medical tradition. For example, a utilitarian use of testing, in this example also immoral, would be to test for conditions which would make an individual less useful to society for the purpose of killing that person, as has been done in some totalitarian systems, such as Nazi Germany. Likewise, the use of genetic testing in attempts to breed a super race would be immoral and unethical. In these examples, the utility of the person to the society is the deciding factor, a position antithetical to the Hippocratic tradition of primary responsibility to the individual patient rather than to an amorphous society or relativistic social policies,” the group said.
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.”
Paul said, “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. …”
He also said as the federal government assumes more control over health care, medical privacy is coming under assault.
“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 said.
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