Sunday, February 7, 2010

Your Children's DNA: In a State Warehouse?

The government possibly has your kids' DNA in it's possession without your consent. They may also test your child without your consent and give out genetic information for research without your awareness or consnet.

Nice, huh?

I'm sure nothing bad can happen. After all, the government always has your best interest at heart.

From this source:

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.

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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.


(No, I would say I have an overriding interest in that, not the state.)
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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.)

9 comments:

Krystal said...

I had the last three at home. I never let them do the blood thingie with the foot (that's how they get the DNA). It's wrong for them to do ANY kind of testing without parental consent.

I don't trust the government.

Anonymous said...

Krystal's 100% correct. I did let them test my children; that's how I found out they were placed here on earth by aliens from another solar system.

Semper Fi

Mustang out

Always On Watch said...

Smacks of Lois Lowry's The Giver.

What use can health-insurance companies make of this information? Well, rating premiums even higher if the information stays on file long enough. Digital records would facilitate that process, not a good process, IMO.

Brooke said...

Even with my time working in OB, I had no idea that the states keep DNA info after PKU testing, some indefinitely.

Scary.

Krystal: Trusting the gov't is never wise.

Mustang: Mine, too! LOL!

AOW: That is one bad possibility.

I'll have to check out that story.

nanc said...

PKU runs in my family and we've all been tested at one time or another - wonder if they kept the samples?

Brooke said...

Hmm, I see my links didn't transfer. I've fixed them.

Try this.

Jen said...

Mustang, LOL! A common phrase uttered in our household is, "That's YOUR DNA..."

Jen said...

Seriously. I think it should be completely voluntary. In Texas, the parents must have a religious exemption (bullsh*t!)...PLUS, they have to pay for it! On top of that, the results should not be kept infefinitely.

Brooke said...

Jen: I'd claim whatever religious exemption if I had to, but as a parent you should have the right to refuse any procedure that doesn't directly affect the immediate health of your kid.

Amazing.