Privacy concerns prompt states to reexamine storing newborns' heel blood tests

Close to 4 million babies are born in the United States every year, and within their first 48 hours nearly all are pricked in the heel so their blood can be tested for dozens of life-threatening genetic and metabolic problems. The heel-stick test is considered such a crucial public health measure that states typically require it and parents aren't asked for their permission before it's done.

But the lab tests for newborn screenings generally don't use all of the half-dozen or so drops of blood collected on filter paper cards. So states hold on to the leftover "dried blood spots," as they're called, often without parents' knowledge or consent. In recent years, privacy-related concerns have grown about the sometimes decades-long storage and use of the material.

Some states allow the blood spots to be used in research studies, sometimes by third parties for a fee, or provided to law enforcement personnel investigating a crime. Permitting these or other uses without parents' informed consent that they understand and agree to the use has prompted lawsuits from parents who want to make those decisions themselves and who seek to protect their children's medical and genetic information.