HHS Request for Public Comments on “Considerations and Recommendations for National Guidance Regarding the Retention and Use of Residual Dried Blood Spot Specimens after Newborn Screening,” – a Briefing Paper issued April 26, 2010 by HHS through the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children.
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
Texas began storing newborn DNA, collected for the newborn screening program, in 2002 without parent consent. A recent lawsuit against the State was settled, forcing Texas officials to destroy the 5.3 million infant blood spots in storage.
The Texas Department of Health should never have stored or analyzed the DNA and unique genetic codes of its newborn citizens. It is only right that they destroy the genetic information that they have stored and given to researchers without legal authority or the consent of parents.
The judge's arguments against the nine families are extremely weak. There is no law on the books in Minnesota to support the health department's current practice of indefinite storage, use and sharing of newborn DNA for research without parent consent. The law that is on the books, the Minnesota genetic privacy law, forbids it.
Plantiff's Memo of Law on MN Baby DNA Lawsuit - Submitted by Attorney Randy Knutson for 10/9/09 Hennepin County Court Hearing
Defendants violated the public’s trust and violated the public’s right to privacy and bodily integrity. Since 1965, Defendants collected newborn blood specimens from children born in Minnesota. Defendants screened the blood for genetic disorders. Instead of destroying newborn blood samples and screening results obtained for this newborn screening, Defendants began operating a newborn blood and DNA warehouse. As of December 31, 2008, the warehouse held over a 1.5 million screening records and over 800,000 newborn blood specimens. Unbeknownst to the public at large, Defendants began sharing blood samples and screening results with private institutions for research projects. At no time did Defendants obtain consent for these activities.
HHS Proposes to Set National Policy to Permit State Government Retention of Newborn DNA - WITHOUT Parent Consent Requirements.
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.