IT'S MY DNA!
Storing and Using Newborn DNA—Without Parent Consent
"[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 Florida 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
Public Documents
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April 18, 2013
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.
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
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.
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.
Issues
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February 03, 2012
Bearder v. State of Minnesota was brought by nine families who wanted the state to obrtain written informed consent to collect, store or use infants' blood samples. The lawsuit was spearheaded by the Citizens’ Council for Health Freedom in St Paul.
Press Releases
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January 31, 2012
St. Paul/Minneapolis—Today, the Minnesota Department of Health issued a press release on their plan to begin destroying baby DNA as required by the Minnesota Supreme Court. Twila Brase, president of Citizens' Council for Health Freedom, provides the following comments:
"As opposed to Commissioner Ehlinger's quote, the newborn residual bloodspots are not a 'valuable public health resource,' they are the DNA of every newborn citizen, which the Department has been claiming as theirs. They've been storing, using, and sharing them for research without the consent of parents. It would be illegal for the State to collect and store the DNA of adults, but they have been doing it to up-and-coming adults, in other words, newborns, without authority and in violation of state law for years..."
Press Releases
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November 16, 2011
The Minnesota Supreme Court has ruled that the Minnesota Department of Health is violating the Minnesota Genetic Privacy Law with its storage, use and dissemination of newborn screening test results and newborn DNA.
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