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.
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.—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.
Citizens’ Council for Health Freedom: Don’t Allow Government to Store and Use Genetic Blueprint of America’s Citizens Without Consent
ST. PAUL, Minn.—Lame-duck Senators and Representatives currently hashing out last-minute issues before the holidays have a pressing matter before them—and it involves America’s youngest citizens.
Don’t Allow Government to Collect and Store Genetic Blueprint of America’s Citizens
ST. PAUL, Minn.—In the current lame duck session of Congress, which began last Wednesday, Senators and Representatives will be on a fast-and-furious mission to clear leftover business and push through the last remaining bills before newly elected lawmakers take office in January.
CCHFreedom is sponsoring a special November Tea hosted by our own Wendy Leines targeting a special project aimed at informing new parents in the state of Minnesota about the change in their newborn's baby DNA retention.
ST. PAUL, Minn.—On Thursday, September 11, Citizens’ Council for Health Freedom (CCHF,www.cchfreedom.org) marked its 20th anniversary of preserving patient-centered health care and protecting patient and privacy rights while also looking to the future of the country’s health care system.
Citizens’ Council for Health Freedom: State Government Will Store and Research Private Genetic Info; Opt-Out Form Still Not Available
ST. PAUL, Minn.—This Friday will mark a huge step back in privacy rights for Minnesota’s tiniest residents—and the new law could have national implications.