Right after birth, babies quickly have their heels pricked. A few drops of blood are collected on a card with your child’s name and taken to the lab to be tested for approximately 40 genetic diseases.
But what happens next?
That card typically goes into long-term storage, where it may later be retrieved and given to medical professionals — without baby’s name — for research purposes. But parents have no idea that this is happening.
That changes this week, when a federal act goes into effect, requiring federally-funded researchers using these blood samples to get parental consent beforehand. And California has proposed a bill taking it one step further, requiring parental permission whether research is federally or privately funded.
The concern is one of privacy. The first version of the bill allowed parents to opt out of the screening entirely. But the medical community fears this will create unnecessary alarm around a test that saves lives and identifies 3,400 infants with genetic diseases each year. The workaround? Create a consent form, outlining the potential research uses of blood spot cards, that includes a box to opt in and a box for more information.
Researchers fear privacy concerns are overblown and that this “opt out” option will impede California’s medical research.