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
Texas Department of Health to destroy newborn bloodspots to settle parent lawsuitThe Texas Department of Health should never have stored or analyzed the DNA and unique genetic codes of its newborn citizens. It is only right that they destroy the genetic information that they have stored and given to researchers without legal authority or the consent of parents. Judge's Ruling Supports Government Violation of Minnesota Genetic Privacy LawThe judge's arguments against the nine families are extremely weak. There is no law on the books in Minnesota to support the health department's current practice of indefinite storage, use and sharing of newborn DNA for research without parent consent. The law that is on the books, the Minnesota genetic privacy law, forbids it. Plantiff's Memo of Law on MN Baby DNA Lawsuit - Submitted by Attorney Randy Knutson for 10/9/09 Hennepin County Court HearingDefendants violated the public’s trust and violated the public’s right to privacy and bodily integrity. Since 1965, Defendants collected newborn blood specimens from children born in Minnesota. Defendants screened the blood for genetic disorders. Instead of destroying newborn blood samples and screening results obtained for this newborn screening, Defendants began operating a newborn blood and DNA warehouse. As of December 31, 2008, the warehouse held over a 1.5 million screening records and over 800,000 newborn blood specimens. Unbeknownst to the public at large, Defendants began sharing blood samples and screening results with private institutions for research projects. At no time did Defendants obtain consent for these activities. Diana Waletzko on Protecting Baby DNA CCHF Reports on Newborn Screening Nationwide
Thus far, the state of Minnesota has illegally collected and claims ownership to the DNA of 780,000 children (soon to be voting adults) and has provided the DNA of 42,210 children to genetic researchers without parent consent. Approximately, 73,000 children are born in Minnesota every year. About 4.2 million children are born across the nation. All of them are losing their genetic privacy and DNA ownership rights. Listen in to an interview of Twila Brase, president of CCHC, as she discusses what's at stake for all citizens in the pending legislation.
NEWBORN GENETIC SCREENING: The New Eugenics?To protect every American's right to self-determination, genetic privacy, and DNA property rights, it is time to require informed written parent consent for all facets of the newborn genetic screening program, including storage and use of genetic test results and newborn DNA," said Twila Brase, president of Citizens' Council on Health Care, and author of the report. Donate Today!
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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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