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This is a discussion on Bush signs bill to take all newborns' DNA within the Due in July - Awaiting Ruby Sparklers forums, part of the Due Dates By Month category; I am just shocked... I can't believe it! I mean, this has Revelations written all over it.
Yet another ...
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.
Intact & no vax, gentle disciplining, toddler nursing, co-slept & wrapped,
cloth diapering and ECing, future unschooling, and Jesus-loving family
Planning to birth unassisted July 08 (and then tandem nurse)
It's in that package with the PKU test and all, which is mandatory before you leave a hospital unless you specifically refuse and sign a waiver.
And yeah, me too! LOL
eta meant it's going to be
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Sunny, wife to Kris, mama to:
Intact & no vax, gentle disciplining, toddler nursing, co-slept & wrapped,
cloth diapering and ECing, future unschooling, and Jesus-loving family
Planning to birth unassisted July 08 (and then tandem nurse)
I am probably one of Bush's least supportive people out there, and am so liberal that I border on being a socialist With that disclaimer, I think the article about this bill is misleading. I followed the link that says "read the full bill here", and read the summaries issued. It is sponsored by a democrat (Chris Dodd), and is not a bill passed to collect DNA for a database, but a bill passed to support (financially) research relating to genetic screening for heritable disorders at birth, especially in kids that have risk factors for those disorders. In addition to funding programs and development of programs that would offer (NOT force) such screening, it funds programs to research effectivness of screening for genetic disorders, etc. So while I can see why people might be scared that this is some sort of plan for Bush to start accruing information about us (which is not beyond him), to me it looks like a program in support of medical research, which is something that Bush has not been very supportive of so far. Anyway, here is the summary of the bill from the govtrack site:
Section 2 -
Amends the Public Health Service Act to authorize the Secretary of Health and Human Services, acting through the Administrator of the Health Resources and Services Administration (HRSA), to award grants to eligible entities to: (1) provide screening, counseling, or health care services to newborns and children having or at risk for heritable disorders; (2) provide education and training in newborn screening and congenital, genetic, and metabolic disorders to health care professionals and newborn screening laboratory personnel; (3) develop and deliver educational programs about newborn screening, counseling, testing, follow-up, treatment, and specialty services to parents, families, and patient advocacy and support groups; and (4) establish, maintain, and operate a system to assess and coordinate treatment relating to congenital, genetic, and metabolic disorders.
Section 3 -
Authorizes appropriations for FY2008-FY2012 for grants for demonstration programs to evaluate the effectiveness of screening, counseling, or health care services in reducing the morbidity and mortality caused by heritable disorders in newborns and children.
Section 4 -
Expands the duties of the Advisory Committee on Heritable Disorders in Newborns and Children to include: (1) making recommendations that include the heritable disorders for which all newborns should be screened; (2) developing a model decision-matrix for newborn screening expansion; and (3) considering ways to ensure that all states attain the capacity to screen for the recommended conditions. Sets forth deadlines for the Secretary to make a decision on Advisory Committee recommendations.
Requires the Advisory Committee to continue to operate during the five-year period beginning on the date of enactment of this Act.
Section 5 -
Requires the Secretary, acting through the Administrator, to establish and maintain a central clearinghouse of current information on newborn screening. Sets forth requirements for such clearinghouse, including: (1) ensuring that the clearinghouse is available on the Internet and is updated at least quarterly; (2) providing links to websites that have expertise in newborn screening; (3) providing information about newborn conditions and screening services available in each state; (4) providing current research on conditions for which newborn screening tests are available; and (5) providing the availability of federal funding for newborn and child screening for heritable disorders.
Section 6 -
Requires the Secretary, acting through the Director of the Centers for Disease Control and Prevention (CDC), to provide for: (1) quality assurance for screening laboratories; and (2) appropriate quality control and other performance test materials to evaluate the performance of new screening tools.
Requires the Secretary to establish an Interagency Coordinating Committee on Newborn and Child Screening to make recommendations on: (1) programs to collect, analyze, and make available data on certain heritable disorders; and (2) the establishment of regional centers to conduct applied epidemiological research on effective interventions for preventing poor health outcomes resulting from such disorders and to provide information and education to the public on such effective interventions.
Section 7 -
Requires the Secretary, acting through the Director of CDC, to develop a national contingency plan for newborn screening in the event of a public health emergency.
Authorizes the Secretary to continue to carry out, coordinate, and expand research in newborn screening (to be known as the Hunter Kelly Newborn Screening Research Program), including: (1) identifying, developing, and testing the most promising new screening technologies; and (2) experimental treatments and disease management strategies for conditions that can be detected through newborn screening for which treatment is not yet available.
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- ali >^..^<
>^..^<
max emery born 12.26.03
zeke avery born 10.26.06
baby girl due 7.15.08
Right, but when that information for medical research is collected without parental consent, that crosses my line.
I mean, DS1 was already given Vitamin K, Hep B, and erythromycin (eye antibiotic ointment) AND the PKU test without my consent... and almost circ'd without my consent... the government using his (or DS2's) DNA w/o my permission would just be the last straw, KWIM?
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Sunny, wife to Kris, mama to:
Intact & no vax, gentle disciplining, toddler nursing, co-slept & wrapped,
cloth diapering and ECing, future unschooling, and Jesus-loving family
Planning to birth unassisted July 08 (and then tandem nurse)
I just read the entire bill, and I dont see anything about collecting DNA or screening infants as a standard practise or without consent. It also doesnt mention using the results of DNA screening for research, other than funding research to develop screening programs and effectiveness of screening programs. There are already many many informed consent laws surrounding research, particularly for vulnerable populations (such as children), and anything that can be linked to any kind of identifier WILL NOT be used for research without consent. Like I said, I am no fan of Bush's, but this wasnt his (or his party's) bill in the first place, and seems pretty benign to me.
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- ali >^..^<
>^..^<
max emery born 12.26.03
zeke avery born 10.26.06
baby girl due 7.15.08
I should modify my comment above: the bill doesnt mention using DNA for research without parental consent. I think one of the ideas of the program is to use the information for medical research into various genetic conditions, which is not a bad thing as long as the studies are well developed and carried out following informed consent.
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- ali >^..^<
>^..^<
max emery born 12.26.03
zeke avery born 10.26.06
baby girl due 7.15.08
Informed consent ITA with that, except informed consent is almost nonexistent in our hospitals. But as long as I am able to opt out (should I have an emergency transfer) then that's fine... the problem is, I didn't even KNOW DS had been vaccinated or eye-gooped or even PKU'd until discharge... when you go to the hospital to deliver, most places you sign a blanket consent form, meaning they really don't have to ask anything... and most of the time won't even tell unless you specifically ask... But then again, that's not a problem with the above bill, it's a problem with hospitals in general. It's just that now something else can be thrown into the mix...
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Sunny, wife to Kris, mama to:
Intact & no vax, gentle disciplining, toddler nursing, co-slept & wrapped,
cloth diapering and ECing, future unschooling, and Jesus-loving family
Planning to birth unassisted July 08 (and then tandem nurse)
i personally liked it when they came in my room 3 hours after my csection, i was still high as a kite from pain meds and half asleep, trying to get me to sign circ consent forms and other crap. that was not acceptable. i mean i was getting my son circ'ed anyways, but it bug someone just out of surgery is not ok.
Haha Erin... I delivered at 10:46pm, and at 3am a nurse came into my room with a med pack, explaining what each of the 8 pills do, how I have to log them when I take them, what's safe with what, what's dangerous to take together... I'm sitting there thinking, dude, it's 3am. Can you write this down for me??? I have NO idea what she said to me, at all!!
and jeez, consent to circ just 3 hours later? I mean come on, they have 4-5 days to do that!
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Sunny, wife to Kris, mama to:
Intact & no vax, gentle disciplining, toddler nursing, co-slept & wrapped,
cloth diapering and ECing, future unschooling, and Jesus-loving family
Planning to birth unassisted July 08 (and then tandem nurse)
I should modify my comment above: the bill doesnt mention using DNA for research without parental consent. I think one of the ideas of the program is to use the information for medical research into various genetic conditions, which is not a bad thing as long as the studies are well developed and carried out following informed consent.
I totally agree.
When I first read the blurb about this bill I was a bit disturbed, but upon further reading I can see the potential for good here.
Although the blanket hospital consent forms may not be ideal, I do feel like it's my job to know what shots etc my kid will/will not get prior to going in for delivery. Actually we're following a modified/selective vax schedule with this little gal and I just pray not to run into any issues.
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Arwen
Co-HOST of Due in July
Proud Mommy of Angelina 01/04 &
Lorelai Annalise 6/26/08
OMG I would flip. Thank god I'm in Canada and that's not here yet. The problem with that is they say it's for one thing, but could turn around and use it for something else entirely. Governments all over the world aren't exactly honest. I agree with you Sunny, Revelations all over it. Next they'll be tattooing bar codes on infants, and away we go.
Think about it this way... they can test DNA now to see if you're more "pre-disposed" to certain types of cancer. If your infant IS, then no matter how healthy he/she is as an adult, they could be denied health/life insurance.
And the conspiracy theorist in me worries that it'll eventually get to a point where certain people are encouraged to procreate while others aren't... the people with "good" DNA, KWIM? Then again I've read too many sci-fi novels for my own good
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Sunny, wife to Kris, mama to:
Intact & no vax, gentle disciplining, toddler nursing, co-slept & wrapped,
cloth diapering and ECing, future unschooling, and Jesus-loving family
Planning to birth unassisted July 08 (and then tandem nurse)
Bush signs bill to take all newborns' DNA
With that disclaimer, I think the article about this bill is misleading. I followed the link that says "read the full bill here", and read the summaries issued. It is sponsored by a democrat (Chris Dodd), and is not a bill passed to collect DNA for a database, but a bill passed to support (financially) research relating to genetic screening for heritable disorders at birth, especially in kids that have risk factors for those disorders. In addition to funding programs and development of programs that would offer (NOT force) such screening, it funds programs to research effectivness of screening for genetic disorders, etc. So while I can see why people might be scared that this is some sort of plan for Bush to start accruing information about us (which is not beyond him), to me it looks like a program in support of medical research, which is something that Bush has not been very supportive of so far. Anyway, here is the summary of the bill from the govtrack site:
ITA with that, except informed consent is almost nonexistent in our hospitals. But as long as I am able to opt out (should I have an emergency transfer) then that's fine... the problem is, I didn't even KNOW DS had been vaccinated or eye-gooped or even PKU'd until discharge... when you go to the hospital to deliver, most places you sign a blanket consent form, meaning they really don't have to ask anything... and most of the time won't even tell unless you specifically ask... 
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