IT'S MY DNA!
Baby DNA and Newborn Screening
...[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
One FL baby says "Help! The Gov't Has My DNA"
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
Press Releases
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May 08, 2013
The Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) announced a huge victory today with the defeat of Senator John Marty’s (D-Roseville) newborn screening language.
This is a list of all the data the MN Department of Health collects and how they use it.
CCHF President, Twila Brase, was published in the Pioneer Press on April 17, 2013 regarding legislation in the Minnesota House and Senate that would grant authority for DNA and personal medical information to be collected, stored and used for research WITHOUT individual consent. It has now been APPROVED by the Senate but still will need to be heard by the House before it can go to the Governor. Protect your Privacy! Sign the NoBiobank petition!
Four months into the legislative session, and after many requests, the Minnesota Department of Health has provided the state legislature with a list of all the genetic information (biological specimens and health data) that they have been collecting, using, storing and disseminating without legislative authority or individual written consent -- as required by the Minnesota Genetic Privacy Act (M.S. 13.386). The list was provided shortly before a floor vote on April 18 to give MDH retrospective legal protection against MGPA violation lawsuits as well as prospective authority to collect, store, use and share any and all genetic information on individuals without the individual's consent, long into the future.
The FIRST PAGE includes data that the statutes allow. The SECOND AND THIRD page is DNA and data they've collected and used by making up their own rules. There may be a statute listed, but it doesn't give them express authority to do what they've been doing in violation of the law. HF 695 and SF 745 will protect them from lawsuits forever...and give MDH ownership claims to the DNA of citizens. PETITION: http://bit.ly/SayNoDNABiobank
Press Releases
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April 10, 2013
“The Minnesota legislature is proposing to create a biobank of genetic information including biological specimens and health data. The Minnesota Department of Health biobank would be exempt from the Minnesota Genetic Privacy Act, and its informed written consent requirement. Therefore they could collect, store, use, and disseminate genetic information without individual consent.
A "newborn screening" amendment was attached to an unrelated bill (HF 2967 - Holberg) on Monday, May 7, 2012. Prior to the amendment being added, CCHF worked with Rep. Holberg and other legislators to make sure certain informed parent consent requirements and strongly-worded protections regarding newborn citizens and Baby DNA were added to the amendment.
Press Releases
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October 01, 2012
ST. PAUL, Minn. – In yet another federal over-reach that breaches parental rights, the Newborn Screening Translational Research Network (NBSTRN) announced last week that it had developed a centralized, virtual, web-based repository of newborns’ DNA, obtained through dried blood spots. DNA samples are collected from infants at birth and often saved, stored, and used for research without the knowledge or consent of an infant’s parents.
Transcripts
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May 29, 2012
Sen. Hann’s Floor Statements on Newborn Screening & Baby DNA Parent Consent Amendments to HF 2967
Transcripts
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May 25, 2012
Rep. Mary Liz Holberg’s Newborn Screening and Baby DNA Parent Consent
Dear Senator Hann:
...This research and devlopment effort can only take place if the newborn's blood spots are available after their testing is completed.
