Newborn screening is the most widely-performed genetic testing program in the United States.
Some states store the newborn screening dried blood spots (“Baby DNA”) for research; some even allow blood spots to be sold to researchers. In most cases, this is being done without parental consent.
CCHF’s efforts have included orchestrating the first parent lawsuit filed in the nation against state government storage, use, and dissemination of baby DNA without parental consent. In 2014, CCHF secured a temporary federal law requiring parental consent for use of baby DNA for federally-funded research.
The effort to secure a permanent federal law continues.
Protecting Baby DNA
CCHF continues to work at federal and state levels to secure parental consent requirements for retention and outside access and use of baby DNA. CCHF continues to work with members of Congress and policymakers in various states in opposition of this intrusive program.
Most parents are not even aware that their baby’s DNA is being warehoused, sold, and researched, which is why it is critical to stay informed. To learn more about this research program, visit itsmydna.com.