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
As a starting point, let me reiterate that newborn screening is the “largest single application of genetic testing in medicine,” according to Dr. Jeffrey Botkin, MD, MPH, at the university of Utah’s Department of Pediatrics and Medical Ethics. Also, I’d like to draw to your attention the written testimony submitted by the Council for Responsible Genetics, and Minnesota ACLU which both oppose this bill. The Council notes that that language is in opposition to recommendations by national committees and research studies.
He who holds the data makes the rules. If you haven’t figured this out, it’s almost too late. Obama knows it. In 2009, his team mandated electronic medical records and $27 billion to make it happen as a “foundation” for health care reform.
ST. PAUL, Minn.—Twila Brase, patient advocate and co-founder of Citizens’ Council for Health Freedom, a Minnesota-based national organization with a goal to preserve patient-centered health care and protect patients’ rights, will testify before the Minnesota State House of Representatives Health and Human Services Committee tomorrow regarding parental consent and the storage and use of baby DNA.
ST. PAUL, Minn.—Over the past two decades, there has been a tireless force in the crusade to preserve patient-centered health care and protect patients’ rights. The organization is the Minnesota-based Citizens’ Council for Health Freedom, co-founded in 1994 by Twila Brase.
Government keeps the DNA of newborns -- without parent consent. All across the country, state health departments are taking newborn DNA within 48 hours of birth, and many are storing it for genetic and other research. Some indefinitely. Consent is usually not required. Hospitals prick the baby’s heel, drip the baby’s blood (DNA) onto a card with filter paper, and send it to the government.
ST. PAUL, Minn.—The start of 2014 marks a victory for the protection of private genetic data with the settlement of a lawsuit between 21 Minnesota families and the Minnesota Department of Health. The multi-year case argued the illegal and improper storage and use of newborn blood samples and genetic test results obtained under the Newborn Screening Program by the state health department. The ruling is in favor of the 21 plaintiffs, and now the blood samples and test results obtained without consent must be destroyed.