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

 
 

10-PART OVERVIEW

 

'Biobank' bill threatens genetic privacy

'Biobank' bill threatens genetic privacy

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

Without Consent - "Genetic Grab" List from MDH

Without Consent - 'Genetic Grab' List from MDH

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

Minnesota DNA Biobank Poses Threat to Genetic Privacy Rights

Minnesota DNA Biobank Poses Threat to Genetic Privacy Rights

 “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.

New Virtual "Baby DNA" Repository Enables New Breaches in Privacy and Rights

New Virtual 'Baby DNA' Repository Enables New Breaches in Privacy and Rights

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.

May 7, 2012 Senate Floor Discussion - Amendments to HF2967

May 7, 2012 Senate Floor Discussion - Amendments to HF2967

Sen. Hann’s Floor Statements on Newborn Screening & Baby DNA Parent Consent Amendments to HF 2967

May 3, 2012 House Floor Discussion - Amendments to SF1212

May 3, 2012 House Floor Discussion - Amendments to SF1212

Rep. Mary Liz Holberg’s Newborn Screening and Baby DNA Parent Consent

Bill with Consent Protections for Baby DNA Heads to Minnesota Governor

Bill with Consent Protections for Baby DNA Heads to Minnesota Governor

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.

Mayo Clinic Letter to Senator Hann

Mayo Clinic Letter to Senator Hann
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.

NATURE Magazine Discusses CCHF's Baby DNA Efforts

NATURE Magazine Discusses CCHF's Baby DNA Efforts

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.

CCHF Responds to MDH Press Release on Baby DNA

CCHF Responds to MDH Press Release on Baby DNA

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..."