IT'S MY DNA!
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
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.
Testimony
•
March 19, 2014
The ACLU of Minnesota opposes HF 2526. This bill represents a dangerous effort to enable unlimited retention and minimize parental consent, allowing newborn blood samples to be used at the whim of the government and researchers, rather than through the consent of the newborn and their family.
Testimony
•
March 18, 2014
Newborn screening is the “largest single application of genetic testing in medicine,” as stated by 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, which opposes this bill saying it’s in opposition to recommendations by national committees and research studies.
Press Releases
•
March 10, 2014
ST. PAUL, Minn.—There’s something expectant parents should know about the impending birth of their little ones this year. Their baby’s most precious gift—their genetic blueprint—is at risk of being used and stored forever by the Minnesota Health Department—without consent.
eNews Commentary
•
March 06, 2014
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.
Press Releases
•
March 04, 2014
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.
Press Releases
•
February 25, 2014
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.
eNews Commentary
•
January 15, 2014
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.
Links and Quotes
•
January 13, 2014
Various lawsuit documents in which the Minnesota Department of Health (MDH) said they would destroy all or part of the Baby DNA bloodspot cards (specimens) and genetic test results. The MDH press release appears to say that they will destroy all data and DNA they collected before the Supreme Court decision.
Press Releases
•
January 13, 2014
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.
.jpg)
.png)
