The DNA of virtually every newborn in the United States is collected and tested soon after birth. There are some good reasons for this testing, but it also raises serious privacy concerns that parents should know about.

States require hospitals to screen newborns for certain genetic and other disorders. Many states view the testing as so important they do not require medical personnel to get parents’ express permission before carrying it out. To collect the DNA sample, medical personnel prick the newborn’s heel and place a few drops of blood on a card. There is one question that new parents rarely ask: What happens to the blood spots after the testing is done? This is where newborn screening becomes problematic.

It used to be that after the screening was completed the blood spots were destroyed. Not anymore. Today it is increasingly common for states to hold onto these samples for years, even permanently. Some states also use the samples for unrelated purposes, such as in scientific research, and give access to the samples to others.

The ACLU believes that parents have the right to know before the state stores their child’s blood and allows it to be used by researchers and others. The ACLU also believes that parents have the right to decide whether to allow their child’s blood to be used in this way. We are working to make sure that every parent is given the opportunity to make these important decisions for their child, and is given enough information to make an educated decision.

>> Read our comments on this issue to the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children.