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


(click here)


Diana Waletzko on Protecting Baby DNA

Diana Waletzko at the Citizens' Council on Health Care Press
Conference on Protecting Baby DNA. Tuesday, August 4, 2009.

The Newborn Screening Card - card for collecting five bloodspots

2008-09 News Media Gallery

2008-09 News Media Gallery
Minnesota Department of Health - Violating State Genetic Privacy Law

CCHF Reports on Newborn Screening Nationwide

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.

Mayo Clinic Documents Opposing Consent Requirements


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.

Newborn Genetic Screening - The New Eugenics?

Increasingly, the specter of eugenics has emerged over State government newborn genetic screening programs. For example, The Changing Moral Focus of Newborn Screening, the December 2008 report issued by The President’s Council on Bioethics, states: “...At what point have we crossed the line from legitimate family planning to capricious and morally dubious eugenics?"

Packed press conference to protect medical record privacy & patient control!

House DFL Leadership railroads Baby DNA bill to passage


Last night, citizens won! The baby DNA bill was defeated in the Senate on March 16, 2009 - at least temporarily. Thanks to the nearly 50 concerned citizens that were a very visual (and auditory - think baby) presence in the room (see below). There were individuals, couples, pregnant women, children and babies. There were also other reasons for the defeat (see below).