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May 25th, 2008, 05:11 PM
Fluffy Baby's Avatar Platinum Supermommy
Join Date: Feb 2007
Location: SW FL
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I am surprised this hasn't been done yet. WDYT? Do you think it is ok to take your baby's DNA without your consent? Would you fight agianst this? Are you ok with it, if so, WHY?


President Bush last week signed into law a bill which will see the federal government begin to screen the DNA of all newborn babies in the U.S. within six months, a move critics have described as the first step towards the establishment of a national DNA database.

Described as a "national contingency plan" the justification for the new 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.

Read the full bill here.

One health care expert and prominent critic of DNA screening is Twila Brase, president of the Citizens’ Council on Health Care who has written a detailed analysis (PDF) of the new 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."

In a previous report we outlined the consequences of the already existing DNA warehousing operation in Minnesota, a program that the Citizens’ Council on Health Care has been following closely for a number of years.

Ms. Brase explained in a statement last month that state Health Department officials are now seeking exemption for the so called "DNA Warehouse" from Minnesota privacy law. This would enable state officials to continue to take the DNA of newborn infants without consent, which would also set the precedent for nationwide policy on DNA screening.

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 establishes this practice within the law.

Another vocal critic of bill S. 1858 is Texas Congressman Ron Paul who made the following comments before the U.S. House of Representatives:

"I cannot support legislation, no matter how much I sympathize with the legislation’s stated goals, that exceed the Constitutional limitations on federal power or in any way threatens the liberty of the American people. Since S. 1858 violates the Constitution, and may have untended consequences that will weaken the American health care system and further erode medical privacy, I must oppose it."

Paul, a medical doctor himself continued, "S. 1858 gives the federal bureaucracy the authority to develop a model newborn screening program. Madame Speaker the federal government lacks both the constitutional authority and the competence to develop a newborn screening program adequate for a nation as large and diverse as the United States. …"

"Those of us in the medical profession should be particularly concerned about policies allowing government officials and state-favored interests to access our medical records without our consent … My review of S. 1858 indicates the drafters of the legislation made no effort to ensure these newborn screening programs do not violate the privacy rights of parents and children," Paul continued.

"In fact, by directing federal bureaucrats to create a contingency plan for newborn screening in the event of a ‘public health’ disaster, this bill may lead to further erosions of medical privacy. As recent history so eloquently illustrates, politicians are more than willing to take, and people are more than willing to cede, liberty during times of ‘emergency," he concluded.[/b]
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May 25th, 2008, 05:54 PM
LaLa's Avatar Platinum Supermommy
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Well, it reeks of the old german nazi crap IMO.

I think its unconstitutional, but it doesnt surprise me.


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May 25th, 2008, 07:42 PM
SweetSimpleThings's Avatar Platinum Supermommy
Join Date: Feb 2007
Location: B.C., Canada
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Yikes. Without consent?

On principle alone, yes, I'd be opposed to this. Do I see some really helpful applications for having it in place, absolutely... but to demand it of people who aren't even aware it's going on, no. And there are also some very negative Big Brother applications that I can see down the road that would come out of it.

I donated our cord for research in cord blood, and allowed them to keep our name attached to the sample for future contact (rather than an anonymous sample - this allows them to come back and find out more information from you if they need to to round out the research) and I thought long and hard before I signed the consent form. And that was for a university, not for a government body.

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May 26th, 2008, 06:50 AM
Join Date: May 2008
Location: NC
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I do not agree with it. One representative stood up and spoke against it. Another reason I love Ron Paul.

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May 28th, 2008, 02:43 PM
Xx5Xy1+'s Avatar What's your superpower?
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Location: Wiesbaden, Germany
Posts: 1,428
This scares the hell out of me. I do NOT want anyone having my children's DNA on file. MY DNA is on file with the US Army, but I consented to that (identification purposes). If I want to do that on behalf of my children, I'll make sure to keep their toothbrushes, hairbrushes, etc.

This just smacks of nazi'ism. They'll screen for this and that, and then at some point, for the sake of the greater public health, those who test positive for 'this' will have to be segregated from the rest of the population to ensure they do not pass that gene on to others who aren't 'infected'. I can easily see 'superior race' ethics being ever-so-nonchalantly being brought into practice around this program.

Many people here don't think it could happen... well neither did millions of people in Europe before WWII.

I'm glad we have Ron Paul. At least we have one elected official who has actually READ the constitution.

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May 29th, 2008, 07:21 AM
::er!ca::'s Avatar Platinum Supermommy
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I absolutely do not agree with it and I would fight against it 100%.
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May 29th, 2008, 08:43 AM
Tiffers's Avatar Platinum Supermommy
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Does anyone know if they have an "official" date when this starts. I just saw in there "within 6 months". I'm due in Sept, so this makes me debate if I want to consent to the PKU if it's going to be used for this purpose. I've had 4 previous babies with no problem, so I'm not as concerned about something showing up as I would have with my first.
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May 29th, 2008, 11:47 AM
TheOtherMichelle's Avatar Platinum Supermommy
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Does anyone know if they have an "official" date when this starts. I just saw in there "within 6 months". I'm due in Sept, so this makes me debate if I want to consent to the PKU if it's going to be used for this purpose. I've had 4 previous babies with no problem, so I'm not as concerned about something showing up as I would have with my first.[/b]
Really, really, really reconsider that, please. My daughter has a condition that is tested for on the PKU test and with what she has, there's no genetic link, so having four previous children before is no guarantee that your 5th won't have problems. What she has is easily treated, but without treatment the effects are pretty bad. I'd had to see any family go through that.

As far as the OP, I'll have to read more about it. I think it's interesting, but that's probably due to my love of biology. I think it would be great to be able to screen for genetic defects and treat them before symptoms show up. DNA is information only, and I think having a database would increase our understanding and fuel research. I can see where some aspects of it can lead to something scary, as far as looking at DNA and making it affect your entire life (think Gattaca), but I don't think our government has the capacity to really do much with it beyond keeping up the information. I don't know.. I'll read more about it and post again if I change my opinion.

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May 29th, 2008, 04:18 PM
lhug_nar's Avatar Platinum Supermommy
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I am so 150% against this!!! This to me is just wrong and the government is putting their nose where it doesn't belong again!
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May 29th, 2008, 04:51 PM
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I don't like it. Sounds like the eugenics program from the 30s all over again (you know, the one that Hitler got all his ideas from?).
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May 29th, 2008, 05:11 PM
Sweetpea0708's Avatar Platinum Supermommy
Join Date: Oct 2007
Location: New York
Posts: 8,594
it SOUNDS like a good idea, but if it is such a great thing for our research, why do you need to just take it? Why not let the parents have consent? If you need to have to take someone's DNA without consent, then it's obviously heading in a very scary direction (like eugenics). I am sure there are many people with/without genetic defects that are more than willing to share theirs, both of themselves and their children that this new bill is entirely unneccessary(sp?).
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May 30th, 2008, 01:43 AM
Fluffy Baby's Avatar Platinum Supermommy
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I was reading that they might have already started in some places and since they don't need consent, they don't need to tell us. I can't remember where I read that... Off to look.

If I have to deny the PKU, I will. I do not want this going on with my kids.
Leann <3 Hector
My trio: Alyssa 7, Tristan 4.75, Gavin 1.5

I am a mixture of all that and a bag of chips... IJS

Rest In Peace Jennifer <3

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May 30th, 2008, 06:34 AM
TeresaMarie's Avatar Super Mommy
Join Date: May 2008
Location: North Carolina- Oregon native
Posts: 505
I'm agains this as well. There is another "program" that will be initiated called "Genetic Discrimination" where you or your children or grandchildren could be denied medical insurance (even if you pay) based on the possibility that you may develop an illness or ddisease based on your parents or other relatives genetics.

I could easily see how the government could sell the DNA information to support these insurance companies. YUCK!
Mom to Kailey Danielle born into our hearts February 20, 2001 and wife to Mark, sealed with love on September 24, 2000.
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May 30th, 2008, 11:04 AM
TheOtherMichelle's Avatar Platinum Supermommy
Join Date: Sep 2006
Posts: 8,765
Check out this link to an article about newborn screening tests (which includes the PKU test). Many of these can be successfully treated or better managed if you know about it. It's also interesting that many of these tests are mandatory, although enforcement and which exact tests are routinely done vary from state to state.

I think if you have a problem with the government collecting DNA, you need to speak up and fight to stop it. Denying your child a screening test is not going to solve the greater problem, and puts your child's health and life at risk. You might not even have a choice if the test is mandatory in your state. Maybe there's a way around it, like denying the test in the hospital, but getting a pediatrician to independently order it. Oh, and another though, for those who have had their babies in a birthing center or homebirth, how is the screening handled?

*Off to do more research...

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