DNA of every baby born in California is stored. Who has access to it?
Key Excerpts from Article on Website of CBS News
Posted: June 25th, 2018
The Newborn Genetic Screening test is required in all 50 states. Nearly every baby born in the United States gets a heel prick shortly after birth. Their newborn blood fills six spots on a special filter paper card. It is used to test baby for dozens of congenital disorders. Some states destroy the blood spots after a year, 12 states store them for at least 21 years. California, however, is one of a handful of states that stores the remaining blood spots for research indefinitely in a state-run biobank. The child's leftover blood spots become property of the state and may be sold to outside researchers without the parent's knowledge or consent. "I just didn't realize there was a repository of every baby born in the state. It's like fingerprints," new mom Soniya Sapre responded. In California ... you do have the right to ask the biobank to destroy the leftovers after the fact, though the agency's website states it "may not be able to comply with your request." You also have the right to find out if your child's blood spots have been used for research, but you would have to know they were being used in the first place and we've discovered that most parents don't. But researchers with the California Genetic Disease Screening Program aren't the only ones with access to samples stored in the biobank. Blood spots are given to outside researchers for $20 to $40 per spot. According to biobank records, the program sold about 16,000 blood spots over the past five years, totaling a little more than $700,000.