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A citizens’ rights advocacy organization has called on Minnesota Gov. Tim Pawlenty to make sure his state agencies are following state law that forbids the collection and warehousing of newborns’ DNA without parental consent.
The issue is the collection and storage by state officials of blood samples and DNA information that first is used for screening against a number of diseases but available later for research.
A legislative plan in the state would have made legal the Minnesota Department of Health’s already operational plans to “warehouse” such information for future analysis and research. But Pawlenty vetoed the idea, telling state lawmakers in his veto letter that while screening for medical disorders is a laudable goal, maintaining the database without parental permission – and in fact sometimes in opposition to parental desires – “is concerning.”
“This bill would … expressly exempt the department of health from laws which require written informed consent for the department to store and use personally identifiable genetic information for non-screening purposes,” Pawlenty wrote in a letter earlier this year to Sen. James Metzen, president of the state senate.
“I understand the department’s desire to collect and use blood samples for newborn screening purposes using an opt-out approach. However, I believe written informed consent should be obtained for the long-term storage or use of the blood samples for non-screening research,” he wrote.
“Government handling and storage of genetic information is a serious matter,” the governor said.
In a news conference today, the Citizens’ Council on Health Care accused the state agency of continuing to warehouse DNA information without permission, and called on Pawlenty to bring the actions to a halt.
“Despite Governor Pawlenty’s veto of the health department’s DNA
warehousing bill last legislative session … we have confirmed that the
Minnesota Department of Health is continuing to warehouse baby DNA
without parental consent. This is a direct violation of the genetic
privacy and DNA property rights of parents and children,” said Twila
Brase, president of CCHC.
Brase, chief of the organization that works for freedom for patients and doctors, medical innovation and the right to a confidential patient-doctor relationship, said the governor should take “immediate steps” to let the public know he supports the rule of law.
“He could
decree that no newborn blood be warehoused, used for research, or shared
with others without informed written parent consent. He could order the
health department to release public documents in compliance with the
Government Data Practices Act. And he could also promise to dismantle
the state’s DNA warehouse, protecting the genetic privacy rights of the
more than 780,000 children whose DNA has been claimed by state
government and warehoused without consent,” she said.
Ryan Sibinski, whose wife is expecting twins within weeks, called for his legal rights to be protected.
“My wife and I are acutely aware that storage of newborn DNA is
still being done illegally by the Minnesota Department of Health. We thought
the governor’s veto was supposed to solve this, but we have now
discovered that the storage continues,” he said. “I request here today that the department of health make sure that I am
clearly asked to consent to the storage, use, and sharing of my
children’s blood and DNA. This is my legal right under the law.”
So what’s the big deal about looking into DNA to hunt for various disease possibilities?
Nothing, Brase told WND in a previous extensive interview, 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 Britain 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 earlier. “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.
Brase earlier also told WND if the Minnesota plan would become law, 73,000 newborn citizens would lose their genetic privacy every year.
“Children grow up. Eventually, every citizen will have their DNA owned by state government and available for government to engage in genetic research, experimentation, manipulation, and profiling,” she warned.
She also criticized a federal plan, signed into law by President Bush this year, that calls for a “national contingency plan” to screen newborns’ DNA in case of a public health “emergency.”
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