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OPT-OUT - PARENT FORMS

Minnesota
South Carolina
Texas TX Info


Protect Your Baby at the Hospital - "Newborn Rights" Sign to Post After Birth

Petition to Governor to Veto the "Repeal Genetic Privacy" Bill

National Newborn Genetic Testing Program

Minnesota Newborn Genetic Testing Program

STATISTICS - Objections, Numbers, Dates, and Mayo/MDH Research on Baby DNA w/o Consent

50 States - How Long State Government Keeps Your Baby's DNA

Testimonials - Taking Baby DNA

Newborn Genetic Testing

(AKA "Newborn Screening")


"[N]ewborn screening is the largest genetic testing effort in the nation and is primarily performed by state public health laboratories."

- Genomics and Disease Prevention, a book published on the website of the U.S.
Centers for Disease Control and Prevention

Taking Baby DNA; Photo from 2005 MN Department of health provider manual




One Baby says "Help! The Gov't Has My DNA"

10-PART OVERVIEW

Newborn Genetic Screening, Baby DNA Warehousing
Government Research & No Parent Consent


Newborn Genetic Screening Mandate

Every state has a mandatory newborn screening program to test for serious genetic disorders and genetic traits in newborns. Within 48 hours after the birth of a baby, the heel is pricked... 

Warehousing Baby DNA
After the newborn genetic testing is complete, all State health departments save and store the residual dried blood spots, some for only 3 months, some indefinitely. At least ten States...

Parents Shocked
The public is adamantly in disagreement with storage and research of baby DNA without parent consent. One University of Michigan study by Beth Tarini, Aaron Goldenberg and others ("Not Without My Permission")...

Risk, Refusal, & Backlash

Around the country, some parents who know about the government's baby DNA collection, are avoiding the newborn genetic testing program altogether to keep government from taking and claiming ownership to their child's DNA. They weigh the risk and the rarity and decide not to participate..."

Minnesota Parents Opt-Out
In Minnesota, where parents have the legal right to opt out of newborn genetic testing or allow the testing to be done and then require the destruction of the blood spots and the genetic test results, the numbers of parents opting out of one or the other have risen every year...

Research Using Baby DNA
State Health Departments conduct research and share newborn DNA to private and government researchers. In 2002, federal officials met in North Carolina to discuss the creation of a centralized national biobank of newborn dried blood spots...

Research Without Consent
The potential for violation of individual rights is huge in the issue of storage and use of newborn DNA. At stake are human rights, Fourth Amendment rights, privacy rights, parent rights, property rights, human subject rights and patient rights...

Baby DNA Lawsuits
As members of the American public have become increasingly aware of these state-based Baby DNA warehouses, lawsuits against state departments of health have emerged in Minnesota and in Texas. In Minnesota, nine families...

Informed Consent, Benefits, and Risks
Informed written consent is a requirement for all medical procedures. No physician or hospital can conduct genetic testing on an individual without informed written consent. Yet 50 state laws mandate newborn genetic testing which not only tests the child, but to a certain extent, the mother and the entire family bloodline...

Private Newborn Screening Options

Because newborn genetic testing can lead to the early diagnosis and treatment of rare newborn genetic diseases, most parents will want to have their child tested. For parents who do not wish to allow state government to collect and screen their newborn's blood for these genetic disorders and traits, there are...

 

Newborn DNA Sent to U.S. Military for Law Enforcement Database without Parent Consent

Texas Department of Health to destroy newborn bloodspots to settle parent lawsuit

Judge's Ruling Supports Government Violation of Minnesota Genetic Privacy Law

Plantiff's Memo of Law on MN Baby DNA Lawsuit - Submitted by Attorney Randy Knutson for 10/9/09 Hennepin County Court Hearing

HHS Proposes to Set National Policy to Permit State Government Retention of Newborn DNA - WITHOUT Parent Consent Requirements.



Diana Waletzko at the Citizens' Council on Health Care Press
Conference on Protecting Baby DNA. Tuesday, August 4, 2009.


Special Documents

Not without my Permission: Parents' Willingness to Permit Use of Newborn Screening Samples for Research

Real Life Stories - Taking Baby DNA

50 States - How Long State Governments Keep Baby DNA


National Newborn Genetic Testing Program

GLENN BECK PROGRAM interviews CCHC president:
"Who's DNA is it Anyway?

Newborn Genetic Screening - The New Eugenics? (2009 CCHC REPORT)

The Untold PKU Testing Story...and Why it Challenges Government-Mandated Newborn (Genetic) Screening (2008 CCHC REPORT) A Critical Analysis of the Implications for Genetic Privacy and Consent Rights in Congress' Proposed 'Newborn Screening Saves Lives Act of 2007' (2008 CCHC REPORT)

Thus far, the state of Minnesota has illegally collected and claims ownership to the DNA of 780,000 children (soon to be voting adults) and has provided the DNA of 42,210 children to genetic researchers without parent consent. Approximately, 73,000 children are born in Minnesota every year. About 4.2 million children are born across the nation. All of them are losing their genetic privacy and DNA ownership rights. Listen in to an interview of Twila Brase, president of CCHC, as she discusses what's at stake for all citizens in the pending legislation.

Twila Brase (CCHC President)

 

Minnesota Newborn Genetic Testing Program

When will Governor Pawlenty protect the genetic privacy and DNA property rights of Minnesota's youngest citizens?


Parents and citizens attend court hearing to support nine-family
lawsuit charging MN Dept of Health with violating state genetic privacy law.
MN Dept of Health asked judge to dismiss the lawsuit. Judge has 90 days to rule.

PETITION - Opposing Repeal of the Minnesota Genetic Privacy Law

Parent consent for storage and use of newborn DNA should be required

State IRB Documents Reveal Research on Baby DNA Without Consent

Nine Families Sue State of Minnesota over Genetic Privacy Violations

Background/Pending Legislature on Baby DNA in Minnesota

CCHC Press Conference Challenges Illegal
Government Baby DNA Warehousing

CCHC calls on Governor Pawlenty to require health department compliance with state genetic privacy law for baby DNA - 12/10/08

(To Contact Governor Pawlenty)


CCHC Legislative Archives - Baby DNA



Tell CCHC you took your child out

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Forms for MN Parents


Key Information

The Newborn Screening Card - card for collecting five bloodspots




CCHC Activities in Support of Privacy Rights, Parent Rights, and DNA Property Rights

2007
2006
2003

Migration of Health Department Forms due to public opposition/CCHC's efforts

Refuse Testing

Require Disposal of Blood and Test Results

Hospital Instructions on Newborn Screening



Citizens' Council on Health Care
1954 University Avenue West, Suite 8, St. Paul, MN 55104
Phone: 651.646.8935 / Fax: 651.646.0100, e-mail