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.
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
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.
Citizens’ Council for Health Freedom Says Indiana Should Destroy Newborn DNA Stored Without Parent Consent
ST. PAUL, Minn.—Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) is alerting parents in Indiana to take action to protect the genetic privacy of their newborn babies.
ST. PAUL, Minn.—The blue and white “H” signs signifying a nearby hospital should be symbols of safety and help for those in need of medical care. But increased privacy intrusions, growing threats to parental rights, and encroaching government regulations that diminish quality of care have all contributed to making our nation’s health care system an increasingly unsafe place for Americans.
ST. PAUL, Minn.—The U.S. House of Representatives will vote on Tuesday on the Newborn Screening Saves Lives Reauthorization Act of 2014 (H.R.1281), which would extend for five years the funding program that allows states to collect and store newborn DNA without parental consent.
Federal officials are defending an unconscionable act. Between 2005 and 2009, the National Institutes of Health (NIH) supported research on 1,316 premature newborns without requiring parents to be told their baby could die and the baby’s oxygen monitor would not show their child’s true oxygen level.
A bill signed into law earlier this week by Gov. Mark Dayton allows the health department to collect and store blood samples taken from newborn babies for an indefinite period of time, unless parents opt-out of the program.
Governor Mark Dayton Signs Bill Repealing Parental Consent, Genetic Privacy Rights for Newborn Babies
Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) released the following statement after the Minnesota State House voted 69-58 yesterday to repeal genetic privacy for newborns and allow the state to collect and store newborn DNA without parental consent.