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The government has your baby's DNA #150511
02/05/2010 11:10 AM
02/05/2010 11:10 AM
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ConSigCor Offline OP
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The government has your baby's DNA

By Elizabeth Cohen, CNN Senior Medical Correspondent


* Genetic testing for newborns started in the 1960s
* Specimens are often given to outside researchers
* Scientists have said the collection of DNA samples is a "gold mine" for doing research


(CNN) -- When Annie Brown's daughter, Isabel, was a month old, her pediatrician asked Brown and her husband to sit down because he had some bad news to tell them: Isabel carried a gene that put her at risk for cystic fibrosis.

While grateful to have the information -- Isabel received further testing and she doesn't have the disease -- the Mankato, Minnesota, couple wondered how the doctor knew about Isabel's genes in the first place. After all, they'd never consented to genetic testing.

It's simple, the pediatrician answered: Newborn babies in the United States are routinely screened for a panel of genetic diseases. Since the testing is mandated by the government, it's often done without the parents' consent, according to Brad Therrell, director of the National Newborn Screening & Genetics Resource Center.

In many states, such as Florida, where Isabel was born, babies' DNA is stored indefinitely, according to the resource center.

Many parents don't realize their baby's DNA is being stored in a government lab, but sometimes when they find out, as the Browns did, they take action. Parents in Texas, and Minnesota have filed lawsuits, and these parents' concerns are sparking a new debate about whether it's appropriate for a baby's genetic blueprint to be in the government's possession.

"We were appalled when we found out," says Brown, who's a registered nurse. "Why do they need to store my baby's DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance."

According to the state of Minnesota's Web site, samples are kept so that tests can be repeated, if necessary, and in case the DNA is ever need to help parents identify a missing or deceased child. The samples are also used for medical research.

Art Caplan, a bioethicist at the University of Pennsylvania, says he understands why states don't first ask permission to screen babies for genetic diseases. "It's paternalistic, but the state has an overriding interest in protecting these babies," he says.

However, he added that storage of DNA for long periods of time is a different matter.

"I don't see any reason to do that kind of storage," Caplan says. "If it's anonymous, then I don't care. I don't have an issue with that. But if you keep names attached to those samples, that makes me nervous."

DNA given to outside researchers

Genetic testing for newborns started in the 1960s with testing for diseases and conditions that, if undetected, could kill a child or cause severe problems, such as mental retardation. Since then, the screening has helped save countless newborns.

Over the years, many other tests were added to the list. Now, states mandate that newborns be tested for anywhere between 28 and 54 different conditions, and the DNA samples are stored in state labs for anywhere from three months to indefinitely, depending on the state. (To find out how long your baby's DNA is stored, see this state-by-state list.)

Brad Therrell, who runs the federally funded genetic resource consortium, says parents don't need to worry about the privacy of their babies' DNA.

"The states have in place very rigid controls on those specimens," Therrell says. "If my children's DNA were in one of these state labs, I wouldn't be worried a bit."

The specimens don't always stay in the state labs. They're often given to outside researchers -- sometimes with the baby's name attached.

According to a study done by the state of Minnesota, more than 20 scientific papers have been published in the United States since 2000 using newborn blood samples.

The researchers do not have to have parental consent to obtain samples as long as the baby's name is not attached, according to Amy Gaviglio, one of the authors of the Minnesota report. However, she says it's her understanding that if a researcher wants a sample with a baby's name attached, consent first must be obtained from the parents.

More Empowered Patient news and advice

Scientists have heralded this enormous collection of DNA samples as a "gold mine" for doing research, according to Gaviglio.

"This sample population would be virtually impossible to get otherwise," says Gaviglio, a genetic counselor for the Minnesota Department of Health. "Researchers go through a very stringent process to obtain the samples. States certainly don't provide samples to just anyone."

Brown says that even with these assurances, she still worries whether someone could gain access to her baby's DNA sample with Isabel's name attached.

"I know the government says my baby's data will be kept private, but I'm not so sure. I feel like my trust has been taken," she says.

Parents don't give consent to screening

Brown says she first lost trust when she learned that Isabel had received genetic testing in the first place without consent from her or her husband.

"I don't have a problem with the testing, but I wish they'd asked us first," she says.

Since health insurance paid for Isabel's genetic screening, her positive test for a cystic fibrosis gene is now on the record with her insurance company, and the Browns are concerned this could hurt her in the future.

"It's really a black mark against her, and there's nothing we can do to get it off there," Brown says. "And let's say in the future they can test for a gene for schizophrenia or manic-depression and your baby tests positive -- that would be on there, too."

Brown says if the hospital had first asked her permission to test Isabel, now 10 months old, she might have chosen to pay for it out of pocket so the results wouldn't be known to the insurance company.

Caplan says taking DNA samples without asking permission and then storing them "veers from the norm."

"In the military, for instance, they take and store DNA samples, but they tell you they're doing it, and you can choose not to join if you don't like it," he says.

What can parents do

In some states, including Minnesota and Texas, the states are required to destroy a baby's DNA sample if a parent requests it. Parents who want their baby's DNA destroyed are asked to fill out this form in Minnesota and this form in Texas.

Parents in other states have less recourse, says Therrell, who runs the genetic testing group. "You'd probably have to write a letter to the state saying, 'Please destroy my sample,'" he says.

He adds, however, that it's not clear whether a state would necessarily obey your wishes. "I suspect it would be very difficult to get those states to destroy your baby's sample," he says.

CNN's John Bonifield and Jennifer Bixler contributed to this report


"The time for war has not yet come, but it will come and that soon, and when it does come, my advice is to draw the sword and throw away the scabbard." Gen. T.J. Jackson, March 1861
Re: The government has your baby's DNA #150512
02/05/2010 12:52 PM
02/05/2010 12:52 PM
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Dallas, TX
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LouisCipher777 Offline
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"It's paternalistic, but the state has an overriding interest in protecting these babies,"

The only overriding interest in my child is me... period.

With this information... which I actually knew for a while but hadn't thought about... midwives and home births seem like that much better of an idea.


Never explain yourself. Your friends don't need it and your enemies won't believe you anyway.
Re: The government has your baby's DNA #150513
02/05/2010 02:53 PM
02/05/2010 02:53 PM
Joined: Dec 2004
Posts: 2,129
Slipping the surly bonds of ea...
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Flight-ER-Doc Offline
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Slipping the surly bonds of ea...
There are very severe genetic diseases that can be minimized if (for example) diet is strictly controlled from birth (phenylketonuria or PKU)....or, feed infants normally for a month or two, and they die from severe mental retardation at age five or six... Or Maple Syrup urine disease...or galactosemia, or CF...knowing early (before frank symptoms show) means better outcomes.

I agree that the government shouldn't be cataloging the DNA results, but the testing not only saves the government money (since these diseases are so overwhelming the state winds up paying for treatment) but they also save lives, or at least improve the quality of life.


Emergency Medicine - saving the world from themselves, one at a time.

"Thou shalt not be a victim, thou shalt not be a perpetrator, but, above all, thou shalt not be a bystander."

I make the ADL soil themselves. And that makes me very happy smile
Re: The government has your baby's DNA #150514
02/06/2010 01:38 AM
02/06/2010 01:38 AM
Joined: Aug 2008
Posts: 350
louisville kentucky
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free radical Offline
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free radical  Offline
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louisville kentucky
The government CANNOT be trusted under ANY
c!rcumstances by anybody, anyt!me. Esp. not w/your ch!ldren.


fomerly known as Kentucky Rifleman
Re: The government has your baby's DNA #150515
02/08/2010 11:25 AM
02/08/2010 11:25 AM
Joined: Oct 2001
Posts: 19,714
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ConSigCor Offline OP
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ConSigCor  Offline OP
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Newborns’ DNA Routinely Harvested For Government Bio Banks

Genes are considered the property of big brother

Steve Watson
Infowars.net
Monday, Feb 8th, 2010

Newborns DNA Routinely Harvested For Government Bio Banks 080210DNAThe government is harvesting samples of DNA from every newborn child in the country, storing them in monolithic bio banks and providing them to outside researchers and other agencies such as the Department of Homeland Security, all without the consent or knowledge of parents.

It sounds like the stuff of dystopian nightmare, and it is, but it is also reality.

At Infowars we have been tracking and reporting the story for years, now it has hit the headlines once again this week with CNN probing the issue via the case of Isabel Brown (pictured) from Florida.

Isabel’s mother Annie Brown was confused when she was told by health authorities that her daughter had a gene that put her at risk for cystic fibrosis, because she had never consented for genetic testing to be carried out on her child.

Ms Brown then learned that genetic testing of all newborn babies is routine in every state, and that DNA is kept indefinitely by the government, without parents ever knowing.

“We were appalled when we found out,” says Brown, who’s a registered nurse. “Why do they need to store my baby’s DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance.”

Watch CNN’s report:

Newborns DNA Routinely Harvested For Government Bio Banks FOTR 340x1692

In April 2008, President Bush signed into law a bill which formerly announced the process that the federal government has been engaged in for years, screening the DNA of all newborn babies in the U.S. within six months of birth.

Described as a “national contingency plan” the justification for the law S. 1858, known as The Newborn Screening Saves Lives Act of 2007, is that it represents preparation for any sort of “public health emergency.”

The bill states that the federal government should “continue to carry out, coordinate, and expand research in newborn screening” and “maintain a central clearinghouse of current information on newborn screening… ensuring that the clearinghouse is available on the internet and is updated at least quarterly”.

Sections of the bill also make it clear that DNA may be used in genetic experiments and tests, both by the government and by researchers chosen to handle the DNA samples and the information that goes with them.

Read the full bill here.

Many have described the law as the first step towards the establishment of a national DNA database, like the one in the UK.

In 2006 and 2007, then, Senator Obama, filed legislation that would create a national DNA database. The same bill was filed by Sen. Patrick Kennedy in 2008. The bills required parental consent, but all three died in the Senate.

Health care expert and prominent critic of DNA screening, Twila Brase, president of the Citizens’ Council on Health Care produced a detailed analysis (PDF) of the DNA law in which she warns that it represents the first program of populationwide genetic testing.

Brase states that S.1858 and H.R. 3825, the House version of the bill, will:

* Establish a national list of genetic conditions for which newborns and children are to be tested.
* Establish protocols for the linking and sharing of genetic test results nationwide.
* Build surveillance systems for tracking the health status and health outcomes of individuals diagnosed at birth with a genetic defect or trait.
* Use the newborn screening program as an opportunity for government agencies to identify, list, and study “secondary conditions” of individuals and their families.
* Subject citizens to genetic research without their knowledge or consent.

“Soon, under this bill, the DNA of all citizens will be housed in government genomic biobanks and considered governmental property for government research,” Brase writes. “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.”

“The public is clueless. S. 1858 imposes a federal agenda of DNA databanking and population-wide genetic research. 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.”

The government may outsource genetic research to private companies, who may manipulate, alter or splice the DNA in any way they see fit. Hundreds of samples have already been used in government comissioned studies.

Such information represents a goldmine to employers, insurance companies, medical institutions, and big pharma.

Under such conditions we are faced with the prospect of a society that is literally the mirror image of the nightmarish vision outlined by Aldous Huxley in his 1932 novel Brave New World, where individuals are categorized in a social hierarchy according to their genetic traits.

DNA of newborns has already been harvested, tested, stored and experimented with nationwide.

The National Conference of State Legislatures lists for all 50 states, as well as the District of Columbia, the various statutes or regulatory provisions under which newborns’ DNA is already being collected.

In addition, all 50 states are now routinely providing these results to the Department of Homeland Security.

The Newborn Screening Saves Lives Act of 2007 merely established this practice within the law.

The History Channel recently featured a report on the issue as part of its Eternal Life program. Here is the segment followed by a local news report on the matter from kxan Austin:

Here is a more detailed report from kxan news, aired last November:

In certain states, authorities are required to destroy a child’s DNA sample if a parent demands they do so. Ludicrously, parents wishing to do this must fill in a form like this one from Texas or this one from Minnesota.

In other states, parents have to put their request in writing, however, there is no legal requirement for states to destroy the samples.

The practice of taking DNA from all newborns is not limited to the U.S.

In the UK, a similar DNA harvesting program was rejected in 2005 by The Human Genetics Commission, who cited cost and ethical problems in a report to government ministers.

However, DNA profiling of all newborn babies has since been called for by lawmakers and senior police officers.

In December 2009, a Dublin hospital was revealed to have built a secret database containing the DNA of almost every person born in the country since 1984 without their knowledge.

The retention of newborn screening cards has also caused controversy in Australia and New Zealand where the DNA has been used by police to help to solve crimes. A sample in New Zealand was used to identify the father of a dead child against the wishes of the mother.

There is no doubt that the practice is in operation all over the developed world.

Unless this practice is widely exposed and publicized, we could find ourselves sleepwalking towards the basis for a new eugenics movement, the practice of “perfecting” the human race through genetic manipulation, previously endorsed by Planned Parenthood founder Margaret Sanger, and toyed with by the likes of Adolf Hitler.


"The time for war has not yet come, but it will come and that soon, and when it does come, my advice is to draw the sword and throw away the scabbard." Gen. T.J. Jackson, March 1861
Re: The government has your baby's DNA #150516
02/08/2010 12:47 PM
02/08/2010 12:47 PM
Joined: Nov 2008
Posts: 1,246
North Carolina
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safetalker Offline
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North Carolina
I guess that means I should stop spitting on my rounds before I shoot, and start dipping them in Dog poop instead of mine?
I hear everyday how the Feds have some piece of my personal information. Soooooo what?
If my ancient mind serves me I gave my signature, photo, and SSN to half of the bars, stores, PX's , and ticket takers in Germany, Vietnam,Thailand,Korea, and places I won't discuss here as I used my ID card to gain entrance, cash checks, buy booze, exchange money, and so on.
I have been photographed by everyone of those countries as I left the plane, train, hotel.
DNA without a body has the half life of a good fart.


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