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

NEWBORN SCREENING REFUSAL/OPT OUT FORMS
You may or may not have the option to opt-out of Newborn Genetic Screening, or the state may not make a form publicly available. Contact your department of health for more information.
Note: Some states that allow an Opt-Out may not have specific Opt-Out forms. If you have questions about the form or the Newborn Screening (NBS) Opt-Out/Refusal process, please contact your state’s Department of Health.  

Click on the highlighted state below to view Opt-Out forms as PDFs to save and download.

Quick Links

Additional Information on certain states that allow refusal or opt-out, but may not have forms:
Alaska
Colorado
Connecticut
Hawaii

NEWBORN SCREENING BLOODSPOT DESTRUCTION FORMS
Newborn dried blood spots are valuable because they contain the child’s DNA. Some states make the bloodspots available for research without patient consent. You may or may not have the option to request destruction of the blood spot(s), or the state may not make a form publicly available. Contact your department of health to ask about the blood spot retention practices and how you can ensure your baby’s DNA sample is destroyed. If you have questions about the form or the Newborn Screening (NBS) blood spot retention practices, please contact your state’s Department of Health.
California
Indiana
Iowa
Maine
Michigan
Minnesota
Mississippi
Missouri
New York
North Dakota
Oregon
Pennsylvania
South Carolina
Texas (Destruction Form After 6/1/2012)
Texas (Destruction Form Before 6/1/2012)
Utah
Washington

Return of Blood Spot to Parent Form:
Iowa

Research Opt-Out:
Michigan (Directive to Retain But Not Use for DBS Research)
South Carolina
Note: The state cannot perform research on NBS bloodspots if you order them to be destroyed with one of the forms above. The forms in this section may be completed to allow storage of NBS blood spots with the state, but prohibit research from being performed on them.

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