IT'S MY DNA!
Baby DNA and Newborn Screening
...[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
One FL baby says "Help! The Gov't Has My DNA"
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
eNews Commentary
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March 06, 2014
He who holds the data makes the rules. If you haven’t figured this out, it’s almost too late. Obama knows it. In 2009, his team mandated electronic medical records and $27 billion to make it happen as a “foundation” for health care reform.
Press Releases
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March 04, 2014
ST. PAUL, Minn.—Twila Brase, patient advocate and co-founder of Citizens’ Council for Health Freedom, a Minnesota-based national organization with a goal to preserve patient-centered health care and protect patients’ rights, will testify before the Minnesota State House of Representatives Health and Human Services Committee tomorrow regarding parental consent and the storage and use of baby DNA.
Press Releases
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February 25, 2014
ST. PAUL, Minn.—Over the past two decades, there has been a tireless force in the crusade to preserve patient-centered health care and protect patients’ rights. The organization is the Minnesota-based Citizens’ Council for Health Freedom, co-founded in 1994 by Twila Brase.
eNews Commentary
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January 15, 2014
Government keeps the DNA of newborns -- without parent consent. All across the country, state health departments are taking newborn DNA within 48 hours of birth, and many are storing it for genetic and other research. Some indefinitely. Consent is usually not required. Hospitals prick the baby’s heel, drip the baby’s blood (DNA) onto a card with filter paper, and send it to the government.
Press Releases
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January 13, 2014
ST. PAUL, Minn.—The start of 2014 marks a victory for the protection of private genetic data with the settlement of a lawsuit between 21 Minnesota families and the Minnesota Department of Health. The multi-year case argued the illegal and improper storage and use of newborn blood samples and genetic test results obtained under the Newborn Screening Program by the state health department. The ruling is in favor of the 21 plaintiffs, and now the blood samples and test results obtained without consent must be destroyed.
Press Releases
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November 18, 2013
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.
eNews Commentary
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September 26, 2013
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.
eNews Commentary
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September 05, 2013
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.
eNews Commentary
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August 29, 2013
"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."
Press Releases
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August 28, 2013
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.
