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.

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.