YOUR GOVERNMENT AT WORK
Parents sue state over babies' DNA
http://wnd.com/index.php?fa=PAGE.view&pageId=91520
Minnesota accused of depriving newborns 'of lawful privacy rights'

Posted: March 12, 2009
8:25 pm Eastern

By Bob Unruh
© 2009 WorldNetDaily

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Nine families have filed a lawsuit against 
<http://www.health.state.mn.us/>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 
<http://www.cchconline.org>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."

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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."

<http://www.wnd.com/index.php?fa=PAGE.view&pageId=83253>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."

<http://www.heartlandcollaborative.org/>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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