IT'S MY DNA!
Storing and Using Newborn DNA—Without Parent Consent
"[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 Florida 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
Press Releases
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September 14, 2022
ST. PAUL, Minn. — Reacting to today’s CBS new story on the privacy of newborn dried blood spots stored after newborn genetic screening, Citizens’ Council for Health Freedom releases the following statement from Twila Brase, CCHF’s president and co-founder: “Newborn blood spots, the DNA of America’s children, have been called a 'national treasure,' but this treasure should never become the property of the state as it is in many states today..."
Issues
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September 14, 2022
A state-by-state listing of how long the government will keep and store your child's DNA, following the newborn genetic screenings typically performed immediately after birth.
Press Releases
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August 31, 2021
ST. PAUL, Minn. — In a landmark case, a Michigan law firm, Outside Legal Counsel, has successfully sued the Michigan Department of Health and Human Services. In a major win for the rights of parents and against the government’s long-term storage of a child’s DNA, the court ruled that the state’s unconsented storage and research are unconstitutional.
Model Legislation
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August 05, 2021
Parents are permitted to refuse newborn genetic screening or to choose private newborn genetic screening. Notwithstanding any other state or federal law or regulation, prior to conducting newborn genetic screening, a health care facility or health care provider must receive the express, separate, written, voluntary, informed consent of the parents or guardian of a newborn child. A general consent permitting treatment signed by the parents or guardian at admission to a facility does not fulfill this requirement. This consent requirement cannot be waived for any reason.
Press Releases
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August 12, 2019
ST. PAUL, Minn.—Even though Congress could be called back from the August recess to address gun measures after the devastating shootings in El Paso and Dayton, Citizens’ Council for Health Freedom (CCHF) is urging state residents to contact their U.S. Senators and Representatives about three important health care issues.
Press Releases
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July 29, 2019
ST. PAUL, Minn.—More than 15 years ago, Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) discovered that the Minnesota Department of Health was storing and using Baby DNA—the genetic blueprints of its youngest citizens obtained through newborn screenings—without parental consent.
CCHF Statements
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June 11, 2019
ST. PAUL, Minn.— Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org), the organization that discovered state storage of newborn DNA in Minnesota in 2003, called on Minnesota’s governor to destroy stored newborn DNA in July 2007 and pulled Minnesota parents together in March, 2009 for the first lawsuit filed in the nation, applauds yesterday’s federal appeals court ruling on retention and use of newborn DNA in Michigan.
Press Releases
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April 22, 2019
ST. PAUL, Minn.—In a world dominated by technology, surveillance and privacy concerns, there is very little that still truly belongs to human beings.
Their DNA should be one of these closely guarded possessions.
CCHF Statements
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February 06, 2019
ST. PAUL, Minn.—The Office for Human Research Protections at the U.S. Department of Health and Human Services today used a Frequently Asked Questions (FAQ) to issue a notice on federally funded research using newborn dried blood spots taken by states for genetic testing at birth.
Press Releases
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August 20, 2018
ST. PAUL, Minn.—Three important court cases involving Baby DNA are in progress in Michigan, and while one has suffered a setback, litigators and parents are pressing forward to ensure that their children’s genetic blueprint, and the genetic code of other newborn babies, is protected and kept private.
CCHF STATEMENT RE: CBS Story on Newborn DNA Privacy
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