The Bill Nobody Noticed: National DNA Databank

[lovuian]

http://www.naturalnews.com/025116.html

In April of 2008, President Bush signed into law S.1858 which allows the federal government to screen the DNA of all newborn babies in the U.S. This was to be implemented within 6 months meaning that this collection is now being carried out. Congressman Ron Paul states that this bill is the first step towards the establishment of a national DNA database.

S.1858, known as The Newborn Screening Saves Lives Act of 2007, is justified as a "national contingency plan" in 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: http://www.govtrack.us/congress/bill.xp...
more...

This needs to be stopped or parents allowed to refuse

[Spectral Music]

1. K & R

:kick:

[Lorien]

2. That's just sick

where's the outrage?

[lovuian]

4. I don't think people know

Obama needs to change this

[jberryhill]

7. The outrage at what?

The outrage that Dodd, Clinton and Kennedy want to provide funding for public health departments to improve screening and reporting of inherited diseases?

Or the outrage at the way that Ron Paul and others have distorted this public health testing bill as a "National DNA Database"?

Because the second characterization is deliberately untrue - and yes, I'm outraged about that.

[lovuian]

15. Whoah you know some people think the Patriot act is

to protect their rights when it gets rid of habeas corpus

I'm just asking does this bill say

S.1858 which allows the federal government to screen the DNA of all newborn babies in the U.S

is all Newborns DNA getting screened and recorded in a database for access

[jberryhill]

22. NO, it's not

It is providing money to public health programs to test for genetic diseases in newborns.

Why not just read the Bill, it's not hard.

[lovuian]

25. So if your on Medicaid your child is tested without your

consent because your on Governmnent insurance

As long as the parent has the right to refuse and the child is not tested without the Parent's consent then this is ok but I don't see that part in the bill

[Greyhound]

96. If you know anything about information systems you know there has to be

a database and databases are forever.

[Hannah Bell]

43. Oh bull. "improve screening & reporting of inherited diseases" bull.

It IS a national database when every newborn is typed & registered, duh.

We don't need a frigging national registry to screen & report diseases.

[jberryhill]

81. You are joking, right?

Homocystinuria might have an incidence of 1:50,000. It might have an incidence of 1:150,000. Right now, we don't really know.

I'll tell you what...

I'll put you in charge of the NIH, give you a budget of a billion dollars and a list of diseases to which you can allocate research funds.

What kinds of things would you like to know in order to split that money up?

[Hannah Bell]

85. Gee, I guess the only way to know is to collect samples from every newborn

on public funds, in centralized labs, right?

i wonder how we ever figured out the incidence of other inherited diseases?

[jberryhill]

86. Centralized labs?

The point of the bill is to support existing state newborn testing programs.

You have larger issues with public health policy in general, apparently.

[babylonsister]

3. Jeebus! First I've heard of this. Rec'd for a lot more eyes.

:scared:

[I Have A Dream]

5. K&R.

:(

[jberryhill]

6. Sponsored by Chris Dodd, Hillary Clinton, and Ted Kennedy

This bill has nothing to do with a "National DNA Database". It provides federal funding for public health departments to conduct screening for inherited diseases, and to provide reporting of statistics about those diseases.

It is widely characterized by Ron Paulites and other tinfoil hatters as some sort of "DNA databank", but it is absolutely not.

Read the bill.

[Kalyke]

8. Unless people can opt out, it will turn into a DNA databank.

I don't care who sponsored it, if it's required, it's fascism.

[jberryhill]

10. What section of the bill has anything to do with creation of a DNA databank?

Please cite to the section of the bill you are talking about.

This is not brain surgery, the entire text is available online.

[lovuian]

13. Is it this part

S.1858 which allows the federal government to screen the DNA of all newborn babies in the U.S
the DNA will go in a Data base right?

[jberryhill]

17. No, it won't

If you want to argue about what the bill does, then you are going to have to quote some actual part of it.

To make it easier for you, I've copied the entire text of the bill below.

The part about the "information clearinghouse" which you oppose, I've highlighted below.

How about you copy and paste where you find this "National DNA Databank" bullshit:


One Hundred Tenth Congress

of the

United States of America

AT THE SECOND SESSION

Begun and held at the City of Washington on Thursday,

the third day of January, two thousand and eight

An Act

To amend the Public Health Service Act to establish grant programs to provide for education and outreach on newborn screening and coordinated followup care once newborn screening has been conducted, to reauthorize programs under part A of title XI of such Act, and for other purposes.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the `Newborn Screening Saves Lives Act of 2007'.

SEC. 2. IMPROVED NEWBORN AND CHILD SCREENING FOR HERITABLE DISORDER.

Section 1109 of the Public Health Service Act (42 U.S.C. 300b-8) is amended--

(1) by striking subsections (a), (b), and (c) and inserting the following:

(a) Authorization of Grant Program- From amounts appropriated under subsection (j), the Secretary, acting through the Administrator of the Health Resources and Services Administration (referred to in this section as the `Administrator') and in consultation with the Advisory Committee on Heritable Disorders in Newborns and Children (referred to in this section as the `Advisory Committee'), shall award grants to eligible entities to enable such entities--

(1) to enhance, improve or expand the ability of State and local public health agencies to provide screening, counseling, or health care services to newborns and children having or at risk for heritable disorders;

(2) to assist in providing health care professionals and newborn screening laboratory personnel with education in newborn screening and training in relevant and new technologies in newborn screening and congenital, genetic, and metabolic disorders;

(3) to develop and deliver educational programs (at appropriate literacy levels) about newborn screening counseling, testing, follow-up, treatment, and specialty services to parents, families, and patient advocacy and support groups; and

(4) to establish, maintain, and operate a system to assess and coordinate treatment relating to congenital, genetic, and metabolic disorders.

(b) Eligible Entity- In this section, the term `eligible entity' means--

(1) a State or a political subdivision of a State;

(2) a consortium of 2 or more States or political subdivisions of States;

(3) a territory;

(4) a health facility or program operated by or pursuant to a contract with or grant from the Indian Health Service; or

(5) any other entity with appropriate expertise in newborn screening, as determined by the Secretary.

(c) Approval Factors- An application submitted for a grant under subsection (a)(1) shall not be approved by the Secretary unless the application contains assurances that the eligible entity has adopted and implemented, is in the process of adopting and implementing, or will use amounts received under such grant to adopt and implement the guidelines and recommendations of the Advisory Committee that are adopted by the Secretary and in effect at the time the grant is awarded or renewed under this section, which shall include the screening of each newborn for the heritable disorders recommended by the Advisory Committee and adopted by the Secretary.';

(2) by redesignating subsections (d) through (i) as subsections (e) through (j), respectively;

(3) by inserting after subsection (c), the following:

(d) Coordination- The Secretary shall take all necessary steps to coordinate programs funded with grants received under this section and to coordinate with existing newborn screening activities.'; and

(4) by striking subsection (j) (as so redesignated) and inserting the following:

(j) Authorization of Appropriations- There is authorized to be appropriated--

(1) to provide grants for the purpose of carrying activities under section (a)(1), $15,000,000 for fiscal year 2008; $15,187,500 for fiscal year 2009, $15,375,000 for fiscal year 2010, $15,562,500 for fiscal year 2011, and $15,750,000 for fiscal year 2012; and

(2) to provide grant for the purpose of carrying out activities under paragraphs (2), (3), and (4) of subsection (a), $15,000,000 for fiscal year 2008, $15,187,500 for fiscal year 2009, $15,375,000 for fiscal year 2010, $15,562,500 for fiscal year 2011, and $15,750,000 for fiscal year 2012.'.

SEC. 3. EVALUATING THE EFFECTIVENESS OF NEWBORN AND CHILD SCREENING PROGRAMS.

Section 1110 of the Public Health Service Act (42 U.S.C. 300b-9) is amended by adding at the end the following:

(d) Authorization of Appropriations- There are authorized to be appropriated to carry out this section $5,000,000 for fiscal year 2008, $5,062,500 for fiscal year 2009, $5,125,000 for fiscal year 2010, $5,187,500 for fiscal year 2011, and $5,250,000 for fiscal year 2012.'.

SEC. 4. ADVISORY COMMITTEE ON HERITABLE DISORDERS IN NEWBORNS AND CHILDREN.

Section 1111 of the Public Health Service Act (42 U.S.C. 300b-10) is amended--

(1) in subsection (b)--

(A) by redesignating paragraph (3) as paragraph (6);

(B) in paragraph (2), by striking `and' after the semicolon;

(C) by inserting after paragraph (2) the following:

(3) make systematic evidence-based and peer-reviewed recommendations that include the heritable disorders that have the potential to significantly impact public health for which all newborns should be screened, including secondary conditions that may be identified as a result of the laboratory methods used for screening;

(4) develop a model decision-matrix for newborn screening expansion, including an evaluation of the potential public health impact of such expansion, and periodically update the recommended uniform screening panel, as appropriate, based on such decision-matrix;

(5) consider ways to ensure that all States attain the capacity to screen for the conditions described in paragraph (3), and include in such consideration the results of grant funding under section 1109; and';

(D) in paragraph (6) (as so redesignated by subparagraph (A)), by striking the period at the end and inserting `, which may include recommendations, advice, or information dealing with--

(A) follow-up activities, including those necessary to achieve rapid diagnosis in the short-term, and those that ascertain long-term case management outcomes and appropriate access to related services;

(B) implementation, monitoring, and evaluation of newborn screening activities, including diagnosis, screening, follow-up, and treatment activities;

(C) diagnostic and other technology used in screening;

(D) the availability and reporting of testing for conditions for which there is no existing treatment;

(E) conditions not included in the recommended uniform screening panel that are treatable with Food and Drug Administration-approved products or other safe and effective treatments, as determined by scientific evidence and peer review;

(F) minimum standards and related policies and procedures used by State newborn screening programs, such as language and terminology used by State newborn screening programs to include standardization of case definitions and names of disorders for which newborn screening tests are performed;

(G) quality assurance, oversight, and evaluation of State newborn screening programs, including ensuring that tests and technologies used by each State meet established standards for detecting and reporting positive screening results;

(H) public and provider awareness and education;

(I) the cost and effectiveness of newborn screening and medical evaluation systems and intervention programs conducted by State-based programs;

(J) identification of the causes of, public health impacts of, and risk factors for heritable disorders; and

(K) coordination of surveillance activities, including standardized data collection and reporting, harmonization of laboratory definitions for heritable disorders and testing results, and confirmatory testing and verification of positive results, in order to assess and enhance monitoring of newborn diseases.'; and

(2) in subsection (c)(2)--

(A) by redesignating subparagraphs (E), (F) and (G) as subparagraphs (F), (H), and (I);

(B) by inserting after subparagraph (D) the following:

(E) the Commissioner of the Food and Drug Administration;'; and

(C) by inserting after subparagraph (F), as so redesignated, the following:

(G) individuals with expertise in ethics and infectious diseases who have worked and published material in the area of newborn screening;'; and

(3) by adding at the end the following:

(d) Decision on Recommendations-

(1) IN GENERAL- Not later than 180 days after the Advisory Committee issues a recommendation pursuant to this section, the Secretary shall adopt or reject such recommendation.

(2) PENDING RECOMMENDATIONS- The Secretary shall adopt or reject any recommendation issued by the Advisory Committee that is pending on the date of enactment of the Newborn Screening Saves Lives Act of 2007 by not later than 180 days after the date of enactment of such Act.

(3) DETERMINATIONS TO BE MADE PUBLIC- The Secretary shall publicize any determination on adopting or rejecting a recommendation of the Advisory Committee pursuant to this subsection, including the justification for the determination.

(e) Annual Report- Not later than 3 years after the date of enactment of the Newborn Screening Saves Lives Act of 2007, and each fiscal year thereafter, the Advisory Committee shall--

(1) publish a report on peer-reviewed newborn screening guidelines, including follow-up and treatment, in the United States;

(2) submit such report to the appropriate committees of Congress, the Secretary, the Interagency Coordinating Committee established under Section 1114, and the State departments of health; and

(3) disseminate such report on as wide a basis as practicable, including through posting on the internet clearinghouse established under section 1112.

(f) Continuation of Operation of Committee- Notwithstanding section 14 of the Federal Advisory Committee Act (5 U.S.C. App.), the Advisory Committee shall continue to operate during the 5-year period beginning on the date of enactment of the Newborn Screening Saves Lives Act of 2007.

(g) Authorization of Appropriations- There are authorized to be appropriated to carry out this section, $1,000,000 for fiscal year 2008, $1,012,500 for fiscal year 2009, $1,025,000 for fiscal year 2010, $1,037,500 for fiscal year 2011, and $1,050,000 for fiscal year 2012.'.

SEC. 5. INFORMATION CLEARINGHOUSE.

Part A of title XI of the Public Health Service Act (42 U.S.C. 300b-1 et seq.) is amended by adding at the end the following:

SEC. 1112. CLEARINGHOUSE OF NEWBORN SCREENING INFORMATION.

(a) In General- The Secretary, acting through the Administrator of the Health Resources and Services Administration (referred to in this part as the `Administrator'), in consultation with the Director of the Centers for Disease Control and Prevention and the Director of the National Institutes of Health, shall establish and maintain a central clearinghouse of current educational and family support and services information, materials, resources, research, and data on newborn screening to--

(1) enable parents and family members of newborns, health professionals, industry representatives, and other members of the public to increase their awareness, knowledge, and understanding of newborn screening;

(2) increase awareness, knowledge, and understanding of newborn diseases and screening services for expectant individuals and families; and

(3) maintain current data on quality indicators to measure performance of newborn screening, such as false-positive rates and other quality indicators as determined by the Advisory Committee under section 1111.

(b) Internet Availability- The Secretary, acting through the Administrator, shall ensure that the clearinghouse described under subsection (a)--

(1) is available on the Internet;

(2) includes an interactive forum;

(3) is updated on a regular basis, but not less than quarterly; and

(4) provides--

(A) links to Government-sponsored, non-profit, and other Internet websites of laboratories that have demonstrated expertise in newborn screening that supply research-based information on newborn screening tests currently available throughout the United States;

(B) information about newborn conditions and screening services available in each State from laboratories certified under subpart 2 of part F of title III, including information about supplemental screening that is available but not required, in the State where the infant is born;

(C) current research on both treatable and not-yet treatable conditions for which newborn screening tests are available;

(D) the availability of Federal funding for newborn and child screening for heritable disorders including grants authorized under the Newborn Screening Saves Lives Act of 2007; and

(E) other relevant information as determined appropriate by the Secretary.

(c) Nonduplication- In developing the clearinghouse under this section, the Secretary shall ensure that such clearinghouse minimizes duplication and supplements, not supplants, existing information sharing efforts.

(d) Authorization of Appropriations- There are authorized to be appropriated to carry out this section, $2,500,000 for fiscal year 2008, $2,531,250 for fiscal year 2009, $2,562,500 for fiscal year 2010, $2,593,750 for fiscal year 2011, and $2,625,000 for fiscal year 2012.'.

SEC. 6. LABORATORY QUALITY AND SURVEILLANCE.

Part A of title XI of the Public Health Service Act (42 U.S.C. 300b-1 et seq.), as amended by section 5, is further amended by adding at the end the following:

SEC. 1113. LABORATORY QUALITY.

(a) In General- The Secretary, acting through the Director of the Centers for Disease Control and Prevention and in consultation with the Advisory Committee on Heritable Disorders in Newborns and Children established under section 1111, shall provide for--

(1) quality assurance for laboratories involved in screening newborns and children for heritable disorders, including quality assurance for newborn-screening tests, performance evaluation services, and technical assistance and technology transfer to newborn screening laboratories to ensure analytic validity and utility of screening tests; and

(2) appropriate quality control and other performance test materials to evaluate the performance of new screening tools.

(b) Authorization of Appropriations- For the purpose of carrying out this section, there are authorized to be appropriated $5,000,000 for fiscal year 2008, $5,062,500 for fiscal year 2009, $5,125,000 for fiscal year 2010, $5,187,500 for fiscal year 2011, and $5,250,000 for fiscal year 2012.

SEC. 1114. INTERAGENCY COORDINATING COMMITTEE ON NEWBORN AND CHILD SCREENING.

(a) Purpose- It is the purpose of this section to--

(1) assess existing activities and infrastructure, including activities on birth defects and developmental disabilities authorized under section 317C, in order to make recommendations for programs to collect, analyze, and make available data on the heritable disorders recommended by the Advisory Committee on Heritable Disorders in Newborns and Children under section 1111, including data on the incidence and prevalence of, as well as poor health outcomes resulting from, such disorders; and

(2) make recommendations for the establishment of regional centers for the conduct of applied epidemiological research on effective interventions to promote the prevention of poor health outcomes resulting from such disorders as well as providing information and education to the public on such effective interventions.

(b) Establishment- The Secretary shall establish an Interagency Coordinating Committee on Newborn and Child Screening (referred to in this section as the `Interagency Coordinating Committee') to carry out the purpose of this section.

(c) Composition- The Interagency Coordinating Committee shall be composed of the Director of the Centers for Disease Control and Prevention, the Administrator, the Director of the Agency for Healthcare Research and Quality, and the Director of the National Institutes of Health, or their designees.

(d) Activities- The Interagency Coordinating Committee shall--

(1) report to the Secretary and the appropriate committees of Congress on its recommendations related to the purpose described in subsection (a); and

(2) carry out other activities determined appropriate by the Secretary.

(e) Authorization of Appropriations- For the purpose of carrying out this section, there are authorized to be appropriated $1,000,000 for fiscal year 2008, $1,012,500 for fiscal year 2009, $1,025,000 for fiscal year 2010, $1,037,500 for fiscal year 2011, and $1,050,000 for fiscal year 2012.'.

SEC. 7. CONTINGENCY PLANNING.

Part A of title XI of the Public Health Service Act (42 U.S.C. 300b-1 et seq.), as amended by section 6, is further amended by adding at the end the following:

SEC. 1115. NATIONAL CONTINGENCY PLAN FOR NEWBORN SCREENING.

(a) In General- Not later than 180 days after the date of enactment of this section, the Secretary, acting through the Director of the Centers for Disease Control and Prevention and in consultation with the Administrator and State departments of health (or related agencies), shall develop a national contingency plan for newborn screening for use by a State, region, or consortia of States in the event of a public health emergency.

(b) Contents- The contingency plan developed under subsection (a) shall include a plan for--

(1) the collection and transport of specimens;

(2) the shipment of specimens to State newborn screening laboratories;

(3) the processing of specimens;

(4) the reporting of screening results to physicians and families;

(5) the diagnostic confirmation of positive screening results;

(6) ensuring the availability of treatment and management resources;

(7) educating families about newborn screening; and

(8) carrying out other activities determined appropriate by the Secretary.

SEC. 1116. HUNTER KELLY RESEARCH PROGRAM.

(a) Newborn Screening Activities-

(1) IN GENERAL- The Secretary, in conjunction with the Director of the National Institutes of Health and taking into consideration the recommendations of the Advisory Committee, may continue carrying out, coordinating, and expanding research in newborn screening (to be known as `Hunter Kelly Newborn Screening Research Program') including--

(A) identifying, developing, and testing the most promising new screening technologies, in order to improve already existing screening tests, increase the specificity of newborn screening, and expand the number of conditions for which screening tests are available;

(B) experimental treatments and disease management strategies for additional newborn conditions, and other genetic, metabolic, hormonal and or functional conditions that can be detected through newborn screening for which treatment is not yet available; and

(C) other activities that would improve newborn screening, as identified by the Director.

(2) ADDITIONAL NEWBORN CONDITION- For purposes of this subsection, the term `additional newborn condition' means any condition that is not one of the core conditions recommended by the Advisory Committee and adopted by the Secretary.

(b) Funding- In carrying out the research program under this section, the Secretary and the Director shall ensure that entities receiving funding through the program will provide assurances, as practicable, that such entities will work in consultation with the appropriate State departments of health, and, as practicable, focus their research on screening technology not currently performed in the States in which the entities are located, and the conditions on the uniform screening panel (or the standard test existing on the uniform screening panel).

(c) Reports- The Director is encouraged to include information about the activities carried out under this section in the biennial report required under section 403 of the National Institutes of Health Reform Act of 2006. If such information is included, the Director shall make such information available to be included on the Internet Clearinghouse established under section 1112.

(d) Nonduplication- In carrying out programs under this section, the Secretary shall minimize duplication and supplement, not supplant, existing efforts of the type carried out under this section.

(e) Peer Review- Nothing in this section shall be construed to interfere with the scientific peer-review process at the National Institutes of Health.'.

[lovuian]

23. Thank you very much and here is my reply

recommendations of the Advisory Committee that are adopted by the Secretary and in effect at the time the grant is awarded or renewed under this section, which shall include the screening of each newborn for the heritable disorders recommended by the Advisory Committee and adopted by the Secretary.';

Looks like each newborn means every newborn



(1) the collection and transport of specimens;

(2) the shipment of specimens to State newborn screening laboratories;

(3) the processing of specimens;

(4) the reporting of screening results to physicians and families;

Processing and reporting means a Database and they will be testing DNA for heritable disorders


(a) In General- The Secretary, acting through the Administrator of the Health Resources and Services Administration (referred to in this part as the `Administrator'), in consultation with the Director of the Centers for Disease Control and Prevention and the Director of the National Institutes of Health, shall establish and maintain a central clearinghouse of current educational and family support and services information, materials, resources, research, and data on newborn screening to

Data on Newborn screening the question is asked and maybe you can tell me will they have DNA on every infant born in this clearinghouse thats all I'm asking

Yes or no

[jberryhill]

28. The answer is "no"

And you are reading impaired.

First of all, the main point is to provide grants to public health agencies to do the type of genetic testing that people with insurance get done as a matter of course.

It doesn't apply to "all newborns", but to newborns who are receiving services from public health agencies - i.e. public clinics.

There is a section in there about developing a contingency plan for a public health emergency - e.g. some sort of pandemic, epidemic, or some sort of pathogenic outbreak - to provide a plan for a widespread screening program.

From there, you jump to a part of the bill that provides educational resources - including "data on newborn screening" - and think someone is going to be storing DNA samples from every infant somewhere?

No - data "about" screening for diseases are things like (a) statistics about incidence of diseases (b) geographical incidence of diseases... and so on.

This bill is about providing funding to public health services so that, for example, African American infants can be tested for sickle cell anemia, and so on.

[lovuian]

42. Thank you very much

The part that concerns me is exactly that section a PLAN for a wide spread screening
in case of a pandemic or epidemic

So public health services can't test for sickle cell anemia ...sorry they have that ability already

but maybe some of the genetic testing is very expensive and they will pay for that testing
but do all babies have to be tested? ...couldn't they go by history o f the patient?

I'm trying to understand it

[jberryhill]

53. I threw that out as an example

You might read the post in this threat from a neonatal nurse.

Or, you might consider what the well known fascist dictatorial front, the March of Dimes has to say:


http://www.marchofdimes.com/aboutus/22684_29860.asp

"“Newborn screening is a vital public health activity that provides early identification and treatment for 29 treatable metabolic, hormonal, genetic and or functional disorders as recommended by American College of Medical Genetics and endorsed by the March of Dimes and the American Academy of Pediatrics. Failure to screen for these conditions puts every baby at risk because if untreated, a seemingly healthy newborn with an undetected condition can become seriously ill, resulting in brain damage, lifelong disabilities, coma, or even death."

[lovuian]

59. You know it looks like the March of Dimes wants to scare

people like the Terrorist is out there and could get any one of you at anytime

My kids weren't screened and they are doing fine

I believe in genetic testing but not EVERY CHILD needs to be

there are lots of countries Germany England ask if they screen every child

you will find they don't

[jberryhill]

65. Garbage

Germany and the UK, as well as most civilized countries including the US, have been doing routine genetic screening for treatable disorders for years:

http://papers.ssrn.com/sol3/papers.cfm?abstract_id=994209

We're talking about diseases which have incidence rates of something like 1:10,000 to 1:15,000. Of course your kids are fine. MOST are.

But if a child is born with PKU, then it's good to know whether exposure to certain foods is going to poison their brain.

http://en.wikipedia.org/wiki/Phenylketonuria

Most babies in developed countries are screened for PKU soon after birth.

If a child is not screened during the routine Newborn Screening test (typically performed at least 12 hours and generally 24-28 hours after birth), the disease may present clinically with seizures, albinism (excessively fair hair and skin), and a "musty odor" to the baby's sweat and urine (due to phenylacetate, one of the ketones produced). In most cases a repeat test should be done at approximately 2 weeks of age to verify the initial test and uncover any phenylketonuria that was initially missed.

Untreated children are normal at birth, but fail to attain early developmental milestones, develop microcephaly, and demonstrate progressive impairment of cerebral function. Hyperactivity, EEG abnormalities and seizures, and severe learning disabilities are major clinical problems later in life. A "musty" odor of skin, hair, sweat and urine (due to phenylacetate accumulation); and a tendency to hypopigmentation and eczema are also observed.

In contrast, affected children who are detected and treated are less likely to develop neurological problems and have seizures and mental retardation, though such clinical disorders are still possible.


Fine. You are opposed to public funding for testing for these sorts of things, and for collecting data that can be used for epidemiological and statistical purposes.

It's all a plot.

[Kalyke]

69. Sounds forced.

FWIW, I refused it.

Now, what we're asking - and you've failed to answer is.... IS EVERY NEWBORN REQUIRED TO HAVE THE TESTING???

Don't post a bunch of whereas's and therefores. Answer the friggin' question.

[jberryhill]

72. No

And nowhere in this bill is there anything that hints at "forced" anything, nor is there anything in this bill that undoes HIPPA.

There is absolutely nothing in this bill that mandates a thing on anyone, and it would not be possible for this bill to provide the government with anyone's identifiable health records.

It is simply the usual suspects whipping up the usual hysteria about nothing.

[Kalyke]

84. If what you say is true, then I haven't a problem.

I was asked only 18 months ago if I wanted to have my daughter tested for anything other than the standard PKU. I said, "no."

First, we have no diseases in my family, save diabetes, which is reasonably treatable, and I just, frankly, don't want to know.

FWIW, both my children are geniuses. My daughter has a full vocabulary and can name all her body parts, certain states, and is precocious to the point of (my husband's and mine) insanity. My son is a straight-A student who is heading next month to the county Spelling Bee.

I know what's in my bloodline - and any risks involved - and can raise my children accordingly(sweets, as it is, are few and far between - diabetes and all. ;) )

[Alameda]

104. but isn't DNA testing used for identification in crime cases?

"....it would not be possible for this bill to provide the government with anyone's identifiable health records."

So if every infant's DNA is tested, then they are identifiable....

[lovuian]

18. Hey do you have a link to the Bill so I can read it

my link is gone

[jberryhill]

20. I posted the whole text above

Or you could just google "S.1858" if you weren't hopelessly lazy.

[lovuian]

24. Thanks for being so kind and thank you for the

being so kind and helpful

[lovuian]

11. Do they take DNA from the Newborns in this bill?

so a parent can refuse your saying

So do they take every babies DNA in this screening?

[jberryhill]

19. I've copied the entire text of the bill elsewhere in the thread

The concern about this bill is tinfoil bullshit.

[madeline_con]

9. I think lots of people noticed. They just didn't go all Orwellian over it. eom

[lovuian]

12. Well with this Administration who tortures lies and steals

we get a bit Orwellian

I guess I am asking is DNA taken from the baby in screening mandatory? or can a parent just refuse or is it not being done...

[madeline_con]

14. What if ti's done as amatter of course, like silver nitrate in the eyes?

Maybe new parents should ask. It could be a good thing. donors would be found more easily, cancer clusters, all kinds of info that isn't for sinister purposes.

[lovuian]

16. Maybe its not Maybe its a way to get your child's DNA on

file??? .... The Patriot Act did Kennedy and Hillary vote for that Gem of legislation?

sometimes the Bush government uses the idea of protecting you when its taking it away

[jberryhill]

21. Idjits don't understand that...

There is a difference between:

1. Providing grants for genetic testing for diseases and for reporting statistical information about the results of the tests; and

2. Collecting a sample of genetic material from every newborn and somehow keeping their "DNA" on file.

And because idiots don't understand that (1) is something that is a perfectly unremarkable public health program - then wingnuts who are opposed to ANY public health programs can use intentional distortion and paranoid scare tactics to give the impression that this is some sort of sinister plan.

It's sad, really.

[undergroundpanther]

31. You trust the "authorities" In this country,filled with

greedy pigs and manipulating con men and sociopaths
to have any sense of right or wrong, holding the DNA map of your kid in their grubby hands you are a fool.
DNA is much more serious of an infringement of a child's person hood than a few drops of silver nitrate.Don't believe for one minute the"authorities" will use that information to help people, because they won't use it that way, they'll use it to discriminate and they'll find a way to get more control over people through that information.They will not use it in a good way,they never have used personal information for improving anyone's life and,they never will..

[rainbow4321]

26. Newborn screening = genetic/metabolic disorders

Most likely trying to get ALL states on the same page.

Having been a newborn and NICU nurse I can tell you that we test newborns' blood for genetic/metabolic diseases. Many of these can lead to mental retardation or other serious outcomes if left not recognized..sometimes all that is needed is that a child's diet needs to be adjusted..diet not adjusted for some diseases means mental retardation or other health problems.

If you were to look at the minimum legally **required** genetic tests on a state by state level/basis, you would have seen up til recently (or maybe still, I'm not sure since I no longer work with newborns) some states test for only a handful, others a dozen, others several dozen.

Basically, the babies born in those states only requiring a handful may be screwed...had they been born in a state that had higher testing standards they would not have been screwed.

Why a state would skimp on such testing when the testing is available is beyond me...

[jberryhill]

29. These people think testing African American kids for sickle cell anemia is an evil plot

This story bubbled up from the fever swamps of conspiracyland.

[lovuian]

33. I want to understand this Bill and belittling us for trying to

understand it and discuss it isn't helping your case at least with me

This Bill is more than just grants this bill will have a clearinghouse and data base keeping
the records on these children's DNA... my problem is that the Bill is vague and I don't see Parental consent in it ... we also have Hippa rules which Congress passed

I just want the Parents informed consent...

[jberryhill]

37. The March of Dimes has a lot of information about it

And you might consider checking out the information at the March of Dimes about it.

It does NOT set up some national databank of DNA. It funds an information clearinghouse about inheritable genetic disorders and testing information.

"An estimated 4,000 babies are identified and treated each year for conditions that could threaten their lives or health, often preventing death and long-term disability. Unfortunately, parents are often unaware that while nearly all babies born in the U.S. undergo some newborn screening, the number and quality of tests vary from state to state. As a result, a child with a given disorder will most likely receive successful diagnosis and treatment if born in a state that tests for that disorder, but may suffer irreversible injury or death if born in another state that does not require such testing."

[lovuian]

44. from the bill

(1) the collection and transport of specimens;

(2) the shipment of specimens to State newborn screening laboratories;

(3) the processing of specimens;

(4) the reporting of screening results to physicians and families;

Processing and reporting means a Database and they will be testing DNA for heritable disorders


(a) In General- The Secretary, acting through the Administrator of the Health Resources and Services Administration (referred to in this part as the `Administrator'), in consultation with the Director of the Centers for Disease Control and Prevention and the Director of the National Institutes of Health, shall establish and maintain a central clearinghouse of current educational and family support and services information, materials, resources, research, and data on newborn screening to

DATA ON NEWBORN SCREENING...

[jberryhill]

48. Omigod, "Data on Newborn Screening"

By Jove, only the most eevil fascists would want data on newborn screening!

I mean, knowing how many newborns were found to have a particular disease could lead to... PLANNING... or ALLOCATING RESOURCES.

You're right, we shouldn't collect public health data. Could you imagine the horror of running an elementary school wellness program and KNOWING how many kids in your district had a particular disease.

It shudderz.

[lovuian]

50. so your ready to give a child's medical records to elementary

school...when the hospitals started putting the Internet into medical records HIPPA was passed to ensure that a person's medical records were PRIVATE

not OWNED by the STATE

when we go socialized medicine there has to be protections

Are you denying that children's DNA results will be processed in a database for access
by the government

[jberryhill]

56. I think the district would want to know the incidence of disorders in the area

You are confusing reporting of data with something else.

You do know that public health departments collect data on the incidence of a LOT of diseases, yes?

It is how we know things like what types of influenza is breaking out where, or statistics about the incidence of all kinds of disease.

Nobody is handing your kid's medical records to anyone. But, absolutely, when you or your children are diagnosed with any of a number of diseases, statistical data is reported to public health authorities.

[lovuian]

64. Genetic disorders and communicable diseases are

different categories

[Cleita]

34. So if the AA kid has sickle cell anemia, what do you suggest?

Exposing them on a hill for the wolves to take them as food? Believe me AA parents know when their child has the disease. There is no need for DNA testing.

[jberryhill]

38. There are a lot of inheritable diseases

...which have severe consequences if they are undiagnosed early.

"An estimated 4,000 babies are identified and treated each year for conditions that could threaten their lives or health, often preventing death and long-term disability. Unfortunately, parents are often unaware that while nearly all babies born in the U.S. undergo some newborn screening, the number and quality of tests vary from state to state. As a result, a child with a given disorder will most likely receive successful diagnosis and treatment if born in a state that tests for that disorder, but may suffer irreversible injury or death if born in another state that does not require such testing. "

[SanchoPanza]

60. Or just letting the parents know so they can act accordingly

There are many cases of Sickle Cell, and other genetic disorders, that go undiagnosed until they cause an acute crisis. Sickle Cell is an instructive case in particular, since the severity of acute crises can be offset by things such as dietary supplements.

In the case of more severe genetic diseases, such as infantile TSD (which is the model for understanding autosomal genetic disorders), early diagnosis at the fetal stage can give potential parents the option of deciding if they do not wish to carry the preganacy to term. Which they may consider, due to the fact that infantile TSD will invariably kill the child before it reaches age five, and does so by rapidly deteriorating nerve cells in the brain. Children go blind, deaf, their muscles atrophy, they become paralyzed and are unable to swallow or breathe on their own. These symptoms do not start until the infant is six months old and there is no treatment. TSD is, currently, a death sentence.

People need to stop conflating genetic counseling and eugenics. The purpose isn't to weed out "defectives", but prepare parents for the unexpected.

[Cleita]

63. Again it's up to the parents to decide if they want this

genetic counseling. When it's a law that it will be done regardless, then it could lead to eugenics.

[SanchoPanza]

66. The bill does not mandate screening

It only sets up an accessible database through which medical professionals can access data on genetic disorders. Parents have the right of refusal, just as anyone has the right to refuse any medical service being offered. But it has to be offered in the first place, and this bill makes it easier to do that.

The notion that this is somehow a slippery slope toward eugenics is, to be blunt, comical. Promoting awareness of a phenomenon does not necessesitate a particular action towards that phenomenon be taken.

[jberryhill]

77. I would suggest this

You would rather not...


sickle cell disease: Sickle cell disease is an inherited blood disease in which red blood cells stretch into abnormal "sickle" shapes and can cause episodes of pain, damage to vital organs such as the lungs and kidneys, and even death. Young children with sickle cell disease are especially prone to certain dangerous bacterial infections, such as pneumonia (inflammation of the lungs) and meningitis (inflammation of the brain and spinal cord). Studies suggest that newborn screening can alert doctors to begin antibiotic treatment before infections occur and to monitor symptoms of possible worsening more closely. The screening test can also detect other disorders affecting hemoglobin (the oxygen-carrying substance in the blood). Incidence: about 1 in every 500 African-American births and 1 in every 1,000 to 1,400 Hispanic-American births; also occurs with some frequency among people of Hispanic, Mediterranean, Middle Eastern, and South Asian descent.

[Cleita]

82. My former neighbors, who were from Africa, had a child with sickle cell.

I'm more familiar than most white people are with seeing the disease up close and families who have it. They seem to have managed the disease quite well with the medicine and medical treatments available to them. They knew there was a high risk because it ran in both families, but were prepared to deal with it. So it seems genetic testing wouldn't have alerted them to anything that they were already ready for. Their other three children were free of the disease but they also are aware of the fact that they carry the gene.

[jberryhill]

83. Again, that's one example...

There are very simple interventions that can make a huge difference in outcomes with a number of genetic diseases if you know early.

Knowing whether a child has sickle cell is the difference between normal or aggressive treatment of what might be a run-of-the-mill infection in most kids, or a life threatening bout of pneumonia.

Most states provided for routine testing of a handful to up to 23 disorders for which simple knowledge and intervention is the difference between life or death.

You don't want to provide funding for public health services to offer testing and to collect data on the effectiveness of intervention in low-incidence diseases. Fine.

[Cleita]

103. Actually, what I want is single payer universal health care for everyone

that will cover these issues. There needn't be a law about it especially from the lame duck Bush administration. Everything they touch turns to blood and dirt.

[Greyhound]

93. All well and good, but I think you've missed the much larger implications of this.

First and foremost, this is a directive not a voluntary or optional program which will create a permanent identification of every child born in the US that will cataloged forever. The ways that this can be abused are simply too numerous to begin to catalog in a discussion forum.

For the short forum let's leave it at, there is absolutely no way to ensure the security and integrity of this data. You are, I am sure, protective of your SSN and bank account information, yet you seem to think having a permanent record of your very DNA in the hands of the government is just fine, that's just insane.

[undergroundpanther]

27. Racially targeted bioweapons..

The control freak right wingers fantasy come true, now with the DNA database they can finally target the attacks,use the drugs and see the awful and evil results on a DNA level.WonDerFul..NOT!


FDA approved a Racially targeted drug..

http://www.bnvillage.co.uk/news-politics-village/74711-gov-t-oks-first-racially-targeted-drug.html

Racially targeted bioweapons have been attempted before..
http://counterpunch.org/price11252005.html

In 2003 it is admitted it is possible.it's 2008 now.
http://www.guardian.co.uk/uk/2003/may/20/science.nanotechnology
http://www.actionbioscience.org/newfrontiers/reyes.html

more ethnically targeted evilness...

http://searchingforthetruth.typepad.com/searching_for_the_truth/2005/04/ethnic_specific.html

http://www.gene.ch/gentech/1999/Jan-Feb/msg00071.html

http://www.basicint.org/pubs/Research/2001diseasebydesign1.htm

http://coat.ncf.ca/articles/links/us_miltary_tested_bio_weapons_on_americans.htm

[jberryhill]

30. Or just maybe...

It would be nice if public health services had funding to screen for Tay Sachs, sickle cell, and other inheritable diseases....

Sheesh.

[undergroundpanther]

35. It would be nice

Have you tried to get insurance with a "pre-existing" condition? Have you been turned down as an adult or adult with a sick child because of a "pre-existing condition"? Already insurance discriminates against sickness.What makes you think babies with faulty DNA won't be discriminated against too?

Howabout insurance companies discriminating against your child because DNA analysis proves it has a "pre-existing" condition?
You know this DNA shit is a dual edged sword. And in this country where money speaks louder than human lives do you really trust the ones with power to care? Well they don't care about anyone else's well being .Never did.

[lovuian]

36. and then it gets more and more elaborate

who is prone to heart disease cancer ... Like I said the patriot act was signed by many congressman and it is a Horrible horrible bill ... it says Protect when it really means take away all your defenses

Hitler would have loved a DNA database

[undergroundpanther]

41. You bet.

He would have been able to'screen' out undesireables with surgical precision.No mixed babies that looked in every way white would be escaping his killing camps. His fantasy of aryan purity would have been enforced on the molecular level.If Hitler could have he would have, done it ,and sadly there are people in our government that share and like hitler's evil cruel and twisted beliefs.

[lovuian]

46. with this information they will be able to genetically

see which races will be proned to certain hereditable diseases

and they can be incite on Bioweapons

and we have many facilities working on Bioweapons

[undergroundpanther]

68. YEP

Some are working on BOTH.

Ever hear of Gene tracking?
http://www.usc.edu/uscnews/stories/16087.html
http://scienceblogs.com/gnxp/2006/12/eugenics_again.php
Mini Me's for Parents
http://www.nytimes.com/2006/12/05/health/05essa.html?_r=2&oref=slogin&pagewanted=print

http://www.sunshine-project.org/publications/pr/pr190907.html
http://www.newscientist.com/article/dn12197-plague-of-bioweapons-accidents-afflicts-the-us.html

And alot of people died..
http://fromthewilderness.com/free/ww3/02_14_02_microbio.html
Gina
http://www.gather.com/viewArticle.jsp?articleId=281474977332116

[Cleita]

32. Eugenics seems to be raising it's ugly head again.

And everyone said we couldn't call them Nazis!

[undergroundpanther]

39. Yes it is

It has been the dream of every right wing fascist pig.Just so happens fascist pigs call the shots in this country,and racists exist at the pentagon ,gaggle and deny what they are in think tanks and skulk at country clubs exclusive and whites only,(there is one full of right
wingers in North Carolina for instance),racists still swarm around places of power like flies on shit.And they still believe in "orders and classes"...

[jberryhill]

40. Yeah.. that's why Hillary Clinton and Ted Kennedy co-sponsored this bill

My goodness, people, this is a bill to provide funding to public health services in order to test for diseases which can KILL KIDS if left undiagnosed and treated early.

Unbelievable. I had no idea the March of Dimes was part of some fascist conspiracy.

[Cleita]

57. I'm sure you are sincere and laws like this are often framed in

a way that makes it look like it's for the best good. I personally am not fond of the March of Dimes, but that's a different discussion. It could be that they too are looking for the greater good and have fallen into the willing hands of those whose purposes are not as sincere. This is a slippery slope if you start doing this. Yes, it will do what you say, but where are the safeguards that it doesn't go further? Especially, because it's coming out at the end of this administration, remember the guys who opposed stem cell research, I can't believe there isn't a big string attached.

[jberryhill]

67. Nobody is "starting" anything

We have a patchwork system of state programs that provide standard newborn screening for things like Phenylketonuria.

The March of Dimes and others have worked hard for many years to provide national uniformity and federal support for screening programs that have been going on for a very long time.

This is an outstandingly mundane and unremarkable public health funding program.

[undergroundpanther]

58. Hillary has her bigot side.

How Hillary Clinton Betrayed the Children's Defense Fund for Political Gain
http://www.buzzflash.com/articles/editorblog/034

The McKinney Act


And..a few comparisons..
http://godlessliberalhomo.blogspot.com/2007/07/some-of-similarities-between-hillary.html

[Quantess]

45. This isn't completely bad and scary.

There are pros and cons. However, it should be strictly voluntary.

[lovuian]

47. you have hit the major point thats all I care about

give the parent a informed decision

so that they can consent

[Quantess]

61. Otherwise, it's just one more right taken away. (eom).

[Greyhound]

94. There is nothing to stop anybody that wants to do this now from doing it. n/t

[DutchLiberal]

49. This is serious shit! Why didn't I know about this?

Where were the media on this?... Oh... yeah... Well, where were Stewart, Maher, Olbermann and Maddow on this? This is sick!

It's not an American phenomenon. It's happening in The Netherlands, too. One of our Ministers has already proposed a DNA database for policemen (supposedly to 'clear them' when their fingerprints are found on a crime scene), and an 'electronic child file' is being kept of all newborns from 2009 on, with all information regarding the child about education, health et cetera. It's scary, but it's true.

[jberryhill]

51. Well... the March of Dimes put out a press release...

http://www.marchofdimes.com/aboutus/22684_29860.asp

"“Newborn screening is a vital public health activity that provides early identification and treatment for 29 treatable metabolic, hormonal, genetic and or functional disorders as recommended by American College of Medical Genetics and endorsed by the March of Dimes and the American Academy of Pediatrics. Failure to screen for these conditions puts every baby at risk because if untreated, a seemingly healthy newborn with an undetected condition can become seriously ill, resulting in brain damage, lifelong disabilities, coma, or even death."

You probably don't have it in the Netherlands, but the March of Dimes is a well known front organization in the United States for the imposition of fascist dictatorship.

[lovuian]

54. all we are making the point is that it needs to be voluntary

and parents have the right to refuse

I'm sure this will be tested in court

[lovuian]

52. Britain was trying to do it also

only those arrested went in the DNA data base but a judge stopped them

Its an agenda going on ...all over the world

[DutchLiberal]

55. Watched 'V for Vendetta' yesterday... Am getting paranoid...

...Or AM I?

[undergroundpanther]

62. You are not paranoid

You are looking at things as they are.If it is causing you cognitive dissonance.FYI.. (a paranoid person is UNAWARE of being paranoid) So by questioning yourself,it means you have insight and therefore you are NOT paranoid.. BTW..Instead consider yourself courageous. The anxiety will wear off over time as you step out of the mainstream and stop fearing leaving it sometimes.
You know you are on the right track if others try to shut you up or shame you for saying what you think is happening,especially when they cannot handle the discomfort of their own cognitive dissonance yet..Especially when faced with things they cannot deal with as reality(despite it is really happening) because it is too threatening to them..to even consider it.So they yell conspiracy to try to write off what you say that they can't handle..

[lovuian]

71. We are discussing and debating the issue

and seeing all sides

they typical tactic to shut someone or bully or make them shut up is call them names
tinfoiler conspiracy theorist Socialist Liberal all those bad names

thats the first tip off

:rofl:

Lets face it folks the people in Congress have funded the Iraq War for 8 years now and we are still looking for WMD

and they passed the Patriot Act

Torture and a 700 billion bailout to rich CEO's is bankrupting our nation

are these Senators and Congressman protecting us??? No impeachment for Bush who is a criminal in everyway

and now McConnel dies in a plane crash which OMG us conspiracy theorist don't believe that one

this Government has NO CREDIBILITY

[undergroundpanther]

78. and I for one DO NOT TRUST THEM

[DutchLiberal]

100. The scariest part, to me, is that those kind of politics are rapidly spreading...

E.g. to my country. People who still think Holland is the freest country in the world, haven't been paying attention.

In a few years, we will be taxed per kilometer we drive with our cars, instead of all paying the same amount of taxes. To 'check' the number of kilometers we drive, a little box will be implemented in each car, which will tell the government where and when you have been driving. I'm not kidding, this process is already underway, a law has already been passed. On top of this, starting in 2009, we will be paying for public transportation with a single card for bus, train and subway. You have to 'check in' and 'check out' with the card to pay and this information will also be available to the government. So in a few years, we won't be able to go anywhere without the government being able to check us.

Now I'm not saying the current government has bad intentions with this, but I fear what can be done with it if we ever get a government that HAS. Now everybody's saying I'm a conspiracy theorist, because we possibly couldn't ever get such a government. Yeah, that's what Americans thought, too.

[SanchoPanza]

74. So I understand clearly

If someone disagrees with you, it's not because their objections have any logical or evidentiary merit. It's just that there is something profoundly wrong with them, because any sign of doubt toward what you profess cannot be formed, in any way, through rational means.

[jberryhill]

79. No, it's that these people think kids shouldn't be deprived

Of the opportunity to mitigate homocystinuria with early nutritional intervention.

Going blind is just one of those childhood joys that shouldn't be taken away.

[undergroundpanther]

80. No that is NOT what I am saying

You like putting words in other peoples mouths?
I was saying there are people that think in little boxes and if you shake their little boxes they'll get upset and take it out on you.A person reacting like that is not logical or making good arguments either and they are name calling and being a jerk.
So,what does name calling and acting like an ass have to do with thinking through an idea or argument?
NOTHING.

[undergroundpanther]

70. It's like the"permanent record" you were threatened with in school

That never existed,well now it exists!

[Rosa Luxemburg]

73. perhaps there should be a national referendum on this?

most parents don't know about this.

[jberryhill]

75. I'm guessing you haven't had any kids in the last few decades

http://kidshealth.org/parent/system/medical/newborn_screening_tests.html

Newborn screening varies by state and is subject to change, especially given advancements in technology. However, the disorders listed here are the ones typically included in newborn screening programs and are listed in order from the most common (all states screen for the first two) to least common (ranging from three-fourths or one-half of states to just a few). Incidence figures included in this list are according to a 1996 AAP policy statement.

* PKU: When this disorder is detected early, feeding an infant a special formula low in phenylalanine can prevent mental retardation. A low-phenylalanine diet will need to be followed throughout childhood and adolescence and perhaps into adult life. This diet cuts out all high-protein foods, so people with PKU often need to take a special artificial formula as a nutritional substitute. Incidence: 1 in 10,000 to 25,000.

* congenital hypothyroidism: This is the disorder most commonly identified by routine screening. Affected babies don't have enough thyroid hormone and so develop retarded growth and brain development. (The thyroid, a gland at the front of the neck, releases chemical substances that control metabolism and growth.) If the disorder is detected early, a baby can be treated with oral doses of thyroid hormone to permit normal development. Incidence: 1 in 4,000.

* galactosemia: Babies with galactosemia lack the enzyme that converts galactose (one of two sugars found in lactose) into glucose, a sugar the body is able to use. As a result, milk (including breast milk) and other dairy products must be eliminated from the diet. Otherwise, galactose can build up in the system and damage the body's cells and organs, leading to blindness, severe mental retardation, growth deficiency, and even death. Incidence: 1 in 60,000 to 80,000. There are several less severe forms of galactosemia that may be detected by newborn screening. These may not require any intervention.

* sickle cell disease: Sickle cell disease is an inherited blood disease in which red blood cells stretch into abnormal "sickle" shapes and can cause episodes of pain, damage to vital organs such as the lungs and kidneys, and even death. Young children with sickle cell disease are especially prone to certain dangerous bacterial infections, such as pneumonia (inflammation of the lungs) and meningitis (inflammation of the brain and spinal cord). Studies suggest that newborn screening can alert doctors to begin antibiotic treatment before infections occur and to monitor symptoms of possible worsening more closely. The screening test can also detect other disorders affecting hemoglobin (the oxygen-carrying substance in the blood). Incidence: about 1 in every 500 African-American births and 1 in every 1,000 to 1,400 Hispanic-American births; also occurs with some frequency among people of Hispanic, Mediterranean, Middle Eastern, and South Asian descent.

* biotinidase deficiency: Babies with this condition don't have enough biotinidase, an enzyme that recycles biotin (one of the B vitamins) in the body. The deficiency may cause seizures, poor muscle control, immune system impairment, hearing loss, mental retardation, coma, and even death. If the deficiency is detected in time, however, problems can be prevented by giving the baby extra biotin. Incidence: 1 in 72,000 to 126,000.

* congenital adrenal hyperplasia: This is actually a group of disorders involving a deficiency of certain hormones produced by the adrenal gland. It can affect the development of the genitals and may cause death due to loss of salt from the kidneys. Lifelong treatment through supplementation of the missing hormones manages the condition. Incidence: 1 in 12,000.

* maple syrup urine disease (MSUD): Babies with MSUD are missing an enzyme needed to process three amino acids that are essential for the body's normal growth. When these are not processed properly, they can build up in the body, causing urine to smell like maple syrup or sweet, burnt sugar. These babies usually have little appetite and are extremely irritable. If not detected and treated early, MSUD can cause mental retardation, physical disability, and even death. A carefully controlled diet that cuts out certain high-protein foods containing those amino acids can prevent these outcomes. Like people with PKU, those with MSUD are often given a formula that supplies the necessary nutrients missed in the special diet they must follow. Incidence: 1 in 250,000.

* homocystinuria: This metabolic disorder results from a deficiency of one of several enzymes for normal development. If untreated, it can lead to dislocated lenses of the eyes, mental retardation, skeletal abnormalities, and abnormal blood clotting. However, a special diet combined with dietary supplements may help prevent most of these problems. Incidence: 1 in 50,000 to 150,000.

* tyrosinemia: Babies with this disorder have trouble processing the amino acid tyrosine. If it accumulates in the body, it can cause mild retardation, language skill difficulties, liver problems, and even death from liver failure. A special diet and sometimes a liver transplant are needed to treat the condition. Early diagnosis and treatment seem to offset long-term problems, although more information is needed. Incidence: not yet determined. Some babies have a mild self limited form of tyrosiemia

* cystic fibrosis: Cystic fibrosis is an inherited disorder expressed in the various organs that causes cells to release a thick mucus, which can lead to chronic respiratory disease, problems with digestion, and poor growth. There is no known cure - treatment involves trying to prevent the serious lung infections associated with it and providing adequate nutrition. Some infections may be prevented with antibiotics. Detecting the disease early may help doctors reduce the lung and nutritional problems associated with cystic fibrosis, but the real impact of newborn screening is yet to be determined. Incidence: 1 in 2,000 Caucasian babies; less common in African-Americans, Hispanics, and Asians.

* toxoplasmosis: Toxoplasmosis is a parasitic infection that can be transmitted through the mother's placenta to an unborn child. The disease-causing organism, which is found in uncooked or undercooked meat, can invade the brain, eye, and muscle, possibly resulting in blindness and mental retardation. The benefit of early detection and treatment is uncertain. Incidence: 1 in 1,000. But only one or two states screen for toxoplasmosis.

[undergroundpanther]

76. Eugenics was invented HERE in the Us of A.

This one scared me..Why because I witnessed it! (see my story below the article I linked to here)



For example, Norplant, a drug approved by the FDA in 1990, provides an alternative to permanent sterilization for women by preventing pregnancy for up to five years. A popular proposal to reduce the birthrate among welfare recipients and unwed teens is to induce them, through monetary incentives of the threat of a loss of benefits, to have Norplant surgically implanted in their upper arm. In 1991, Kansas representative Kerry Patrick defended a proposal to offer $500 to any welfare mother who accepted Norplant, saying the program "has the potential to save the taxpayers millions of their hard-earned dollars. Something must be done to reduce the number of unwanted pregnancies..." (The New York Times, Feb. 9, 1991).

In 1994, legislators in Connecticut and Florida introduced bills that would provide cash bonuses for welfare recipients who accepted Norplant
http://www.sntp.net/eugenics/eugenics_america.htm


I have seen with my own eyes eugenics programs in psych rehab residential housing.
My roommate was black I look white. I wanted my tubes tied I fought my psychiatrist tooth and nail to get it done.Insurance was not the issue.It was strange to me that this resistance was even an issue.The doctors never came out and told me WHY they wanted me to remain fertile.I asked many times and they'd not answer me.

Meanwhile while I was fighting my shrinks for a tube tie...My roommate showed me a little cylinder embedded in her arm.I felt it under her skin..She said she had norplant put in.I asked her if she asked for it.She said no, she didn't want it..than she told me that the program staff said if she did not accept the norplant they would kick her out on the street and refuse her treatment!!(this was a threat and by law nobody could be discharged without a treatment plan so it was fishy as hell)

She was not sexually active for she was so heavily drugged the minute she got home she slept until she got up to go to the day program where staff watched everyone..This was really useless for her and intrusive on her reproductive rights and had risks to her health.

Curious,I asked other clients around the program about Norplant.It was strange the whites had no clue about it and did not get offered or pushed into taking norplant ..but the black women in the program had it put in under coercion.
This really pissed me off.

This happened in a state run psych residential program that housed residents to get them into the community by placing them in private apartments that the state would rent...in 1995-96.
I got attacked by staff(choked unconscious) for trying to report this.

You bet the pro eugenics pieces of shit are out there in jails and hospitals, psych wards and programs,still waging the war on the weak and different..I really HATE these asshole people that think it's ok to force and coerce over medicated black women in psych housing to take norplant!.

About Norplant..
http://www.popcouncil.org/biomed/norplantfaq.html


Who was paying for this shit!!!

That was my post #51 in this thread:
http://www.democraticunderground.com/discuss/duboard.php?az=view_all&address=389x1743046

[ContinentalOp]

87. Uh, why should I care if my DNA is in some national database?

What can they possibly do with it? Are they gonna clone me? Cool!

Sorry if this has already been covered. I couldn't bear to read the whole thread. jberryhill is the only voice of reason here.

[Initech]

88. It's official: We live in the Matrix.

[Mind_your_head]

89. DNA IDENTIFICATION is the PENULTIMATE identification

Let's hope that it ID's ALL of the fraudsters.....the bush family, et al.....that's where the REAL CRIME LURKS!

[wildbilln864]

90. a definite k&r. nt

[LeftishBrit]

91. I don't find this sinister in itself

and I live in a country where the government is going nuts with compulsory ID, etc, so I'm sensitive to such things.

Perhaps one could add a clause or two to increase confidentiality; but this seems to be a medical proposal only. It is important to know more about inherited diseases and their risk factors, so as to allocate health funds most effectively. Some genetic disorders can be controlled by diet and other preventive measures so that their harmful effects can be minimized, *if* they are detected early - ideally prenatally or at birth.

An authoritarian or over-intrusive government will use *anything* in its path for its authoritarian and over-intrusive ends. The important thing to do is not to restrict the availability of information for medical and other purposes, but to limit the powers of government, and increase the explicit protection of freedom and privacy of citizens.

And it should be noted that the main person quoted as raising objections here seems to be Ron Paul, a fanatic RW-libertarian, who is opposed to ANY federal government healthcare provision, so I instantly distrust his motives here!

[Greyhound]

95. Aren't you in IT? I seem to recall something from a previous discussion

regarding that.
:kick:

[LeftishBrit]

98. No I'm not. I'm a researcher on psychology of education

And I live in a country where the government are obsessed with getting databases on people, and then lose them or leave them on trains, etc.

Any technology, even plain old pen and paper, can be (and has been) misused by governments. I don't think we can or should stop medical advances just because they *might* be misused. The key is greater privacy laws, and a culture where government is accountable to the people rather than the other way around.

[Greyhound]

99. My mistake. Perhaps you will take my word for it, this screening necessitates the

creation of said database and once created, remains forever. History shows that it's misuse is not merely a possibility but a certainty.

[gollygee]

92. Is there a database? I don't think it has anything to do with that.

When a baby is born, they test the baby for a bunch of different genetic diseases. If they can find the diseases that early, they can start treatment immediately, and the babies will fare much better. The screening is done for that reason.

Parents probably are allowed to refuse. Parents can refuse an awful lot of tests and procedures. Or they can give birth at home, and opt out of basically everything. I have many friends who've had homebirths. I used the hospital last time and I'm pregnant and I'll use it again this time. And I'm fine with them testing her to see if she has any problems that can get corrected or treated right away.

[The Backlash Cometh]

97. What do they want with our DNA?

[FLAprogressive]

101. The amount of love here for wingnut Ron Paul here is mind-blowing. nt

[lovuian]

102. Britain tryed to have a DNA database and the EU courts said NO

http://www.newser.com/story/6974/british-judge-wants-everyone-in-dna-database.html

Everyone in the UK—and anyone who dares to visit—should be in Britain's national DNA database, a top British judge declared in a BBC interview today, causing an uproar among rights activists. Lord Justice Stephen Sedley called the country's current DNA database—the largest in the world—"indefensible," saying either everyone should be in it or no one.

"We have a situation where if you happen to have been in the hands of the police, then your DNA is on permanent record. If you haven't, it isn't," he told the BBC, adding that racial profiling is common. The British police are permitted to file the DNA of anyone charged with a crime; about 5.2% of the population is on file, the Guardian reports

but the EU stopped it

http://www.reason.com/blog/show/130409.html

The European Court of Human Rights has ruled that British police effort to collect and retain DNA information from people not convicted of any crime violates their privacy rights as guaranteed by the European Convention on Human Rights


Now America has found a way to go around this just get the babies DNA at birth with the
smokescreen of we are looking for birth defects ... there goes that legal problem

they all ready test for PKU at the hospitals but they don't do DNA testing

this bill is to vague