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



10 PART OVERVIEW - Newborn Genetic Screening, Baby DNA Warehousing Government Research & No Parent Consent


MN Supreme Court Says State of Minnesota in Violation of MN Genetic Privacy Law

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.

Minnesota Supreme Court Ruling Favors Genetic Privacy

Minnesota Supreme Court Ruling Favors Genetic Privacy
The Minnesota Supreme Court today issued a ruling in support of the 9-famiies who sued the Minnesota Department of Health for violation of the state genetic privacy law. 

Doctors' Townhall in Nashville

Doctors' Townhall in Nashville

Twila Brase, president of CCHF, discusses the privacy implications of newborn genetic testing and State warehousing of Baby DNA, including State ownership of the DNA of every newborn citizen.


Nine-Family Appelants Reply to the MN Supreme Court re: MN Department of Health Brief

Baby DNA Lawsuits

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.

Sample letter to send to your state Department of Health

MN Dept of Health Brief to the Minnesota Supreme Court

Nine-Family Supreme Court Appellant's Principal Brief

Baby DNA Appeal Decision 2010

Because 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.

Bearder vs. State of Minnesota/MDH - Appellants Brief Filed