ST. PAUL, Minn.—As the Minnesota State Fair began last week, Citizens’ Council for Health Freedom (CCHF,www.cchfreedom.org) encouraged new and potential parents to visit the booth manned by the Minnesota Department of Health’s Newborn Screening Program and request the official state form that will allow parents to have their newborn’s blood spots and test results destroyed rather than stored by the state and used for research.
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
ST. PAUL, Minn.—The Minnesota State Fair, one of the largest in the country, kicks off today. But beyond the famous food-on-a-stick and other fair staples, organizations from around the state see the fair as an opportunity to introduce themselves to the throngs of visitors who will attend the fair through Labor Day.
Virginia “Ginni” Thomas, founder of Liberty Consulting and wife of Supreme Court Justice Clarence Thomas, interviews Twila Brase in the old style (longer answers) on (longer answers) on Daily Caller about Obamacare, Medicare, building a “Wedge of Freedom,” Baby DNA warehousing and the power of privacy to protect health freedom.
Last year, CCHF was instrumental in advocating a parental consent requirement as part of the Newborn Screening Saves Lives Reauthorization Act of 2014, which passed both houses of Congress and was signed into law on December 18.
“CCHF has long fought for the inclusion of informed consent requirements before newborn bloodspots can be stored and used for research,” Brase said, as she prepared to depart for the nation’s capital...
Minnesota Department of Health Tries to Shut Down CCHF’s Informative Mailings to Parents About Use and Storage of Baby DNA
ST. PAUL, Minn.—For more than a century, the contact information from state registration of births has been public in the state of Minnesota. And that information is how Citizens’ Council for Health Freedom (CCHF,www.cchfreedom.org), a Minnesota-based national organization dedicated to preserving patient-centered health care and protecting patient and privacy rights, recently sent nearly 10,000 letters to parents of newborns, letting them know that the state of Minnesota is storing and can use their baby’s DNA for genetic research without consent.
ST. PAUL, Minn.—Beginning tomorrow, a newborn’s DNA collected at the time of newborn screening may not be used for federally funded research unless the parents have given their express written permission, due to the Newborn Screening Saves Lives Reauthorization Act of 2014, which became law in December.
ST. PAUL, Minn.—Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) wants parents of newborns in Minnesota to know that they aren’t the only ones who know their babies intimately.
Citizens’ Council for Health Freedom Releases New Report on Newborn Data Collection; Says Birth Certificates and Newborn DNA Storage Pose Double Threat
ST. PAUL, Minn.—There’s something expectant parents should know about the private, sensitive information being shared at the hospital at the time of their baby’s birth.
ST. PAUL, Minn.—This past year was perhaps one of the most crucial in history regarding patient rights and privacy, as important issues such as government health care, the storage of and research on baby DNA and federal biosurveillance plans all made headlines.
ST. PAUL, Minn.—The U.S. Senate last night passed an Amendment to the “Newborn Screening Saves Lives Reauthorization Act of 2014” (H.R. 1281) that will take a necessary step to protect babies’ private genetic data and ensure that parents are informed about their newborn’s screening blood spots and how they will be used.