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Parents sue state over babies' DNA

Nine families have filed a lawsuit against Minnesota's health department over its practice of collecting DNA from newborns

and then keeping and using the private information.

The announcement was made by the Citizens' Council on Health Care, which said the department has been violating the state's 2006 genetic privacy law by collecting, storing, using and disseminating blood samples and DNA information.

Agency spokesman John Stine said the lawsuit was being reviewed, but he confirmed the department takes the blood samples from about 70,000 infants annually, and unless the parents specifically choose to opt out of the program, their children's DNA is saved.

He said the agency relies on "clinicians" to let parents know of the requirement that they choose to opt out of the program and only provides that information to parents through a website and if they call and ask.

The case alleges "as of December 31, 2008, Defendant Minnesota Department of Health had stored 819,282 dried blood spot baby samples; had stored 1,567,133 records of the results of newborn genetic screening; and had used 52,519 dried blood spot samples for research."

"None of these activities is authorized in law, and all of them violate the Minnesota genetic privacy law," said Twila Brase, president of CCHC.

"Parents and newborn citizens have been deprived of their lawful privacy and DNA property rights. No government agency is above the law," Brase continued. "On behalf of the babies whose rights have already been violated, and on behalf of the 200 babies born each day whose rights will soon be violated, Citizens' Council on Health Care stands in support."

The case was prepared and filed by the Farrish Johnson Law Office of Mankato on behalf of parents Alan and Keri Bearder, Matthew and Stacy Brzica, Ryan and Gabrielle Hagelstrom, Wade and Julie Halvorson, Adam and Andrea Kish-Bailey, Jennifer Nelson, David and Shay Rohde, Anthony and Tracy VanDemark and Brook and Amy VanderLeest.

"Plaintiffs allege that the Minnesota Department of Health has refused to comply with the written informed consent requirements of the law, and has twice tried to change the law to eliminate the law's consent protections for newborns," the filing states.

Under the auspices of "newborn screening," the case alleges the state has taken blood from babies, tested it and then instead of destroying the samples, retained them without consent.

Further, the state has "shared the blood and genetic information with outside private entities and hospitals," the complaint says.

The parents say that means their children's DNA has been used "by government and unknown private entities" for purposes about which they have been denied information.

The complaint requests an injunction to halt the collection, storage and disseminate of genetic information without consent, as well as a court order "compelling Defendants to comply with Minn. State 13.08 and to cease collecting, storing, using and disseminating blood and genetic information without the babies' parents' consent."

CCHC spokeswoman Twila Brase earlier had called on Minnesota Gov. Tim Pawlenty to make sure his 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 last year vetoed the bill, 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."

"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.

Brase said, however, the state Department of Health continued to run its DNA warehouse without parental consent even despite the governor's objections.

"This is a direct violation of the genetic privacy and DNA property rights of parents and children," she said.

So what's the big deal about looking into DNA to hunt for various disease possibilities?

Nothing, Brase told WND in an earlier 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.

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