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
Press Releases
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September 18, 2017
ST. PAUL, Minn.—September is Newborn Screening Awareness Month, which educates parents about tests that help diagnose diseases and disorders early in their baby’s life. But during this awareness month, Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) wants to inform Americans about how the federal ‘Common Rule’ actually strips parents and the nation’s youngest citizens of their rights.
Press Releases
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August 28, 2017
ST. PAUL, Minn.—The nation of Iceland is working to eradicate Down syndrome births by making sure expectant mothers know about government pre-natal testing that would show if their baby has the genetic disorder.
Press Releases
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August 23, 2017
ST. PAUL, Minn.—Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) has been communicating with President Donald Trump through letters about important health care matters and his power to advance health freedom for all Americans.
Federal Reform
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June 30, 2017
In December 2014, President Obama signed the Newborn Screening Saves Lives Reauthorization Act in December 2014. It included the language we worked on with Senator Rand Paul and the Senate Steering Committee. It required parent consent for the use of newborn DNA (collected for newborn screening and stored without consent by many states) for federally-funded research.
Press Releases
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May 15, 2017
ST. PAUL, Minn.—Parents want to keep their children safe, and that may mean having their newborn baby tested for genetic disorders at the time of birth. But another important aspect of parenting is keeping the genetic information of newborn babies private and protected.
Press Releases
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May 09, 2017
ST. PAUL, Minn.—With Mother’s Day just around the corner, every mom remembers the day her baby was born as a time of joy, emotion and, at moments, feelings of stress and being overwhelmed. But one thing most mothers might not think about in those first few days as a new parent is how their newborn baby’s DNA is collected, stored and used for research.
Press Releases
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March 06, 2017
ST. PAUL, Minn.—For years, one of the central issues for Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org), a national health freedom and patient advocacy organization, has been the protection of Baby DNA.
Press Releases
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January 18, 2017
According to an HHS news release, the rule updates “regulations that safeguard individuals who participate in research,” but Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org), a national health freedom and patient advocacy organization, says the rule leaves the country’s youngest citizens out in the cold when it comes to patient privacy.
Press Releases
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April 22, 2016
ST. PAUL, Minn.—Patient privacy for some of Indiana’s youngest citizens—and the fight for the protection of baby DNA nationwide—took a blow this week, as the Indiana Court of Appeals ruled against baby “A.B. Doe,” her parents and other families they were representing.
