IT'S MY DNA!
Baby DNA and Newborn Screening
Private Newborn Screening Options TAKE ACTION - Find Out How Your Baby's DNA is Being Used 50 States - How Long State Government Keeps Your Baby's DNA 50 States & DC - Newborn Screening Laws CCHF Reports on Newborn Screening Nationwide Protect Your Baby at the Hospital - MN "Newborn Rights" Sign to Post After Birth ...[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
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 10-PART OVERVIEW
CCHF Letter to Pres. Trump & Sec. Price regarding the Newborn Screening Common RuleIn 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. Which States Are the Worst Offenders for Storing Baby DNA?
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.
Moms, Do You Know Where Your Baby’s DNA Goes?
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.
Congress Has Two Weeks to Protect Newborn Privacy Rights and Restore Parental Consent
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.
Government ‘Common Rule’ for Research Strips Nation’s Newborn Citizens of Privacy Protections
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.
Indiana Court Ruling Strikes a Blow Against the Protection of Baby DNA
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.
Addendum to CCHF's Public Comments - "Human Subject" Designation
Citizens' Council for Health Freedom would like to underscore the importance of the proposed ALERT Act before MIDNIGHT to Protect Patient Privacy
Your comments are critical to protect your child's and your own Privacy. Comment by 11:59 PM EASTERN time at REGULATIONS.GOV Click here for more information. See CCHF's comments here.
Proposed Rule Would Gut Law That Protects Baby DNA
Citizens’ Council for Health Freedom Educating Americans About ‘Common Rule’ That Would Eliminate Certain Consent Requirements and Open Patients to Being Research Subjects Without Their Full Knowledge
ST. PAUL, Minn.—Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) is educating Americans about a proposed “Common Rule” that would undo years of work to protect baby DNA. Take Action
Health Privacy Alert!
HIPAA DOES NOT PROTECT PRIVACY... AND YOU ARE By federal law, you are not required to sign the clinic or hospital HIPAA "Privacy" form (or the Acknowledgement of the Notice of Privacy Practices embedded in consent forms)...even if the clinic tries to insist that you must. The form has nothing to do with...
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