IT'S MY DNA!
Storing and Using Newborn DNA—Without Parent Consent
NEWBORN SCREENING
REFUSAL / OPT-OUT FORMS
NEWBORN SCREENING
California
NEWBORN SCREENING ADDITIONAL INFORMATION LINKS
Private Newborn Screening Options TAKE ACTION - Find Out How Your Baby's DNA is Being Used 50 State CHART - How Long State Government Keeps Your Baby's DNA (2001 to present) 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 - Newborn Genetic Screening, Baby DNA Warehousing Government Research & No Parent Consent
House to Vote Tuesday on Newborn Blood Screening without Parental Consent
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. Babies Die from Federal Medical Experiments
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. ACLU opposes new law allowing state to keep newborn blood samples
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 Governor Mark Dayton signed a bill yesterday allowing the state to collect and store DNA without parental consent.
Minnesota House Rejects Parental Consent and 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. Minnesota Senate Votes to Eliminate Genetic Privacy Rights for Newborn Babies
The Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) released the following statement after the Minnesota State Senate voted yesterday to repeal genetic privacy for newborns and allow the state to collect and store newborn DNA without parental consent. The vote was on bill S.F. 2047, the Newborn Screening Program Modification. Government Warehousing of DNA a Disturbing State Secret
As parents happily hold their newborn babies and dream of watching them grow up, the government is silently storing their DNA for use in research and analysis, all without parental consent. 5 Reasons to Oppose Baby DNA Bill
This bill undermines the Nov. 2011 MN Supreme Court decision on parent control over newborn genetic information, and the consequent 2012 amendments to require parent consent. The focus of this bill is not newborn screening; it’s on what happens to the child’s DNA and genetic test results post-screening. SF 2047 Testimony by Council for Responsible Genetics
". . . We stand in strong opposition to SF 2047. We believe this bill is against the interests of parents in making a truly informed choice about whether the state of Minnesota shall permanently retain and use their children's personal genetic information . . . " CCH Freedom Says Minnesota on Precipice of Repealing Genetic Privacy
ST. PAUL, Minn.—Minnesota State House and Senate committees have passed a controversial bill on genetic privacy that would strip parents of initial right of consent in having their baby’s DNA researched and stored indefinitely.
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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.
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