PKU test for government DNA?!

Sadie - posted on 04/24/2009 ( 12 moms have responded )

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Have you heard about this? I live in Texas and my mom said she just heard that here and a few other states they do the PKU in the hospital and the government takes the DNA and puts it in their system! Anybody know if this is true? I can see good and bad reasons for this!

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[deleted account]

Denmark has collected PKU tests for storing DNA since the 80's. Many states admit that they store the cards minimum 5 years (which doesn't say much), NJ is 23 years. It shouldn't be a surprise that the gov't would want to have a database of it's citizens DNA.

April - posted on 04/26/2009

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I work in OB and I read through the Newborn Screening Saves Lives Act. I don't see anything about them collecting DNA and sending to the government. When the PKU is collected, the blood is placed in 6 dime size circles on a paper. It does test for more than PKU. There are 30 different metabolic disorders that can be screened for and some of them can be fatal if not identified and treated early. Each state determines whick disorders they test for. Some states test for as little as 6 and others test for all 30

Malinda - posted on 04/24/2009

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After the Patriot Act, no one should be shocked by this. Hopefully this administration gets rid of this along with other right-violating crap that has been around (assuming it really is true).

It's difficult to say why they would want it. Looking for certain nationality DNA to "keep an eye" on certain demographics? Insurance denial down the road? Simple data collection to understand increases in certain diseases? To listen to our thoughts? (kidding) In any case, it just doesn't sound good. Luckily according to what Dawn posted this would have gone into effect after my son was born. But if it isn't gone yet or by August, I have another child's rights to be worried about.

Teresa - posted on 04/24/2009

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seriously?? That is outrageous in my opinion!! Why would the government give 2 hoots about what kids are at risk?? I can see it in the medical field but government?? And who gives them the right to touch our kids in the first place?? BS as far as i am concerned. To my knowledge that has not happened in this country yet. Thank god for that!! I think that is a total violation of our rights and our childrens rights!!

Dawn - posted on 04/24/2009

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Hi Sadie,
After reading your question (and living in TX myself) I did some research. It's not just Texas. It's nationwide. This was the first I had heard of it...and I have 3 kids. It is called the "Newborn Screening Saves Lives Act of 2007." It was passed by congress on Dec 13, 2007 and signed into law by Bush on May 2, 2008. It gives the federal government the right to collect and store dna of every baby born in the U.S. WITHOUT obtaining parental consent--or even notifying the parents.
The purpose is supposed to be to identify at-risk kids (genetic issues, etc). I wonder how long that original purpose will be honored? I wonder what the security is like for this information and if some will be denied health coverage later, etc. Overall, I'm not liking it :(.

Sadie - posted on 04/24/2009

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I can see both sides, they could use it to help the child if ever needed, but they could also use it against them if anything were to happen. To me, it's more that if they are doing it...why not ask the parents? That's the part that bothers me. I did google search it and I saw a gov. site that had notes that said they stopped doing it in Oct 08, but when I clicked the link...I couldn't find that statement in the actual information in that link.

[deleted account]

My son had that test done in the hospital and I don't know if they gave anything to our government or not but I do know that I left the hospital with an airtight sealed foil envelope that contains my son's DNA. This is actually comforting to me in case anything ever happens where they need to identify him.

Teresa - posted on 04/24/2009

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that sounds illegal to me.. but the govenment seems to do what they please. I live in Canada and never heard of it, hope its not true. Why would they want it??

Sadie - posted on 04/24/2009

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I know what the test is...I'm saying that my mom heard on a news show that they take the DNA without telling you. It's not the test, it's what they do in some states, they do the test and take the DNA and give it to the government, I'm trying to find out more about it.

Teresa - posted on 04/24/2009

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haha..no. PKU is to test an enzyme deficiency which can tell you if your child could develop a severe irriversible mental retardation. If it is detected early enough then it can be treated. Thats why they do it a day after babe is born.

It has nothing to do with the government.

Yvonne - posted on 04/24/2009

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I had that test but have no idea what they did with the results. They told me all was fine, results were negative and not to worry. I am curious of what you find out with the state of CA.

Tiffany - posted on 04/24/2009

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I know we did this at the military hospital in TX... I thought it was a normal thing... haha...

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