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
Baby DNA Lawsuits
On March 1, 2011, the Minnesota Supreme Court heard arguments on the nine-family lawsuit against the MN Dept of Health for the collection, storage, use, and dissemination of newborn DNA without the consent or knowledge of parents. Baby DNA Appeal Decision 2010Because the testing of newborn blood is authorized by the newborn screening statute for public-health reasons, a party whose blood was collected, retained, used, or disseminated in accordance with that statute may not assert a separate tort action or constitutional claims of improper governmental taking or invasion of privacy for that conduct. Baby DNA Court Ruling Disregards Constitutional RightsYesterday, the Minnesota Court of Appeals ruled to affirm the lower court's dismissal of the 9-parent lawsuit against the Minnesota Department of Health (MDH). The parents had challenged the collection, retention, use, and dissemination of newborn DNA by MDH as unconstitutional and in violation of the Minnesota Genetic Privacy Act. CCHC Opposes Baby DNA Banking in Comments on HHS ProposalAccording to Recommendations from HHS, the newborn DNA of children is a valuable resource that should be banked by government and made available to researchers without parent consent. Citizens' Council on Health Care has responded in opposition by sending public comments to HHS. TAKE ACTION!
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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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