IT'S MY DNA!
Storing and Using Newborn DNA—Without Parent Consent
NEWBORN SCREENING
REFUSAL / OPT-OUT FORMS
NEWBORN SCREENING
California
NEWBORN SCREENING ADDITIONAL INFORMATION LINKS
Private Newborn Screening Options TAKE ACTION - Find Out How Your Baby's DNA is Being Used 50 State CHART - How Long State Government Keeps Your Baby's DNA (2001 to present) 50 States & DC - Newborn Screening Laws CCHF Reports on Newborn Screening Nationwide Protect Your Baby at the Hospital - MN "Newborn Rights" Sign to Post After Birth "[M]ost parents are completely stunned when they find out that their child's blood is being held by the State. They have no recollection and they think it's unlawful." Dr. Sharon Kardia, University of Michigan, September 23, 2009.
Photo from 2005 MN Department of health provider manual
Newborn screening is the most widely performed type of genetic testing in the United States today. . . . Most states, including New York, do not require parental consent. . . .Most newborn screening programs, including New York's program, store residual newborn blood samples (bloodspots) and use them for research. "Genetic Testing and Screening in the Age of Genomic Medicine (Exec. Summary), NY Dept. of Health.
Whether you like it or not, a complete [genomic] sequencing of newborns is not far away. Francis Collins, Director, National Institutes of Health, October 26, 2009
10 PART OVERVIEW - Newborn Genetic Screening, Baby DNA Warehousing Government Research & No Parent Consent
Destruction of Newborn Genetic Test Results Still Has NOT Begun in Minnesota
ST. PAUL, Minn.—This past Saturday was supposed to mark the first day that baby genetic test result destruction was to begin in Minnesota, marking a historic victory for the protection of private medical information and genetic privacy. Obama’s Phony October 1 “Deadline”
October 1 is a phony deadline. Ignore it. Nobody has to sign up for Obamacare. Absolutely nothing has to happen on October 1. Instead, October 1 is the first day to refuse to enroll in Obama's exchanges (refuse2enroll.org). In six days, you can begin your own personal Obamacare resistance campaign. Our motto: Resist. Repeal. Reclaim. Federal Genetic Profiling of Newborns?
The government wants every baby’s genetic code. Today the National Institutes of Health announced federal grants totaling $25 million over five years to four institutions to develop a process to sequence the genome – the DNA – of every child at birth. States Build Patient-Tracking Systems
"The NSA is not the only agency specializing in surveillance. State government health officials are profiling children and cataloging citizens in massive government databases without the patient's or parent's consent. That's the gist of our new 50-state report, released last week:"Patient Privacy and Public Trust: How Health Surveillance Systems are Undermining Both." CCHF Research Shows State Cancer, Vaccination Registries Are Actually Surveillance Systems
ST. PAUL, Minn.— For the past eight years, Citizens’ Council for Health Freedom has been researching health departments in all 50 states to find out how they use funding from the federal government to obtain and store citizens’ private medical information—in most cases, without patients’ consent. 50-State Report Unveiled; States Track Medical Data from Birth to Death Without Consent
Today, Citizens’ Council for Health Freedom is releasing the findings of one of its most important works to date. For the past eight years, CCHF has been researching health departments in all 50 states to find out how they use funding from the federal government to obtain and store citizens’ private medical information—in most cases, without patients’ consent. 50-State Health Surveillance Report
CCHF has release a new Policy Insights Report: "Patient Privacy and Public Trust: How Health Surveillance Systems Are Undermining Both" Written by Twila Brase, President of CCHF, it reveals the scope and hidden nature of state government health surveillance systems. Using a variety of methods over eight years, CCHF gathered data from all 50 states and D.C. on four major government patient-tracking systems. This data has now been published by CCHF to alert the public to government surveillance and to urge state legislative action to protect individual privacy and consent rights. CCHF Announces Genetic Privacy Victory
The Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) announced a huge victory today with the defeat of Senator John Marty’s (D-Roseville) newborn screening language. MN Dept. of Health Registries
This is a list of all the data the MN Department of Health collects and how they use it. 'Biobank' bill threatens genetic privacy
CCHF President, Twila Brase, was published in the Pioneer Press on April 17, 2013 regarding legislation in the Minnesota House and Senate that would grant authority for DNA and personal medical information to be collected, stored and used for research WITHOUT individual consent. It has now been APPROVED by the Senate but still will need to be heard by the House before it can go to the Governor. Protect your Privacy! Sign the NoBiobank petition! Donate Today!
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*CCHF has received 501(c)3 Model State Legislation LibraryFind Patient and Privacy-Protecting Legislation — Share it with your State Legislature.
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Health Privacy Alert!
HIPAA DOES NOT PROTECT PRIVACY... AND YOU ARE By federal law, you are not required to sign the clinic or hospital HIPAA "Privacy" form (or the Acknowledgement of the Notice of Privacy Practices embedded in consent forms)...even if the clinic tries to insist that you must.
ACA - "Obamacare"
Medical or Health Care Sharing
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Baby DNA Warehousing
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REAL ID - Federal Control
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