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
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.
Twila Brase Testimony on SF 2047, Modifications to New Born Screening Law
As a starting point, let me reiterate that newborn screening is the “largest single application of genetic testing in medicine,” according to Dr. Jeffrey Botkin, MD, MPH, at the university of Utah’s Department of Pediatrics and Medical Ethics. Also, I’d like to draw to your attention the written testimony submitted by the Council for Responsible Genetics, and Minnesota ACLU which both oppose this bill. The Council notes that that language is in opposition to recommendations by national committees and research studies. Statement of the ACLU of Minnesota In Opposition to HF 2526
The ACLU of Minnesota opposes HF 2526. This bill represents a dangerous effort to enable unlimited retention and minimize parental consent, allowing newborn blood samples to be used at the whim of the government and researchers, rather than through the consent of the newborn and their family.
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