Within 48 hours after birth, doctors prick the heels of infants to test their blood for a range of metabolic and hormone disorders that aren’t immediately symptomatic but can be dangerous if left unrecognized and untreated. It’s so crucial that it’s often legally required and doesn’t require parental consent.
The issue isn’t with the test itself. The issue is what’s done with the excess blood samples afterward. Often, these samples are retained for decades afterward and are used — without parental consent — for any number of purposes, including criminal investigations. In fact, the story we linked to below describes a case in which an infant’s excess blood sample was used for a DNA analysis to gather evidence against the child’s father. According to a lawsuit over the issue, this allowed the police to obtain DNA evidence without showing probable cause first.
Data privacy professionals will probably recognize two key privacy concepts being violated here: retention and purpose limitation. These samples are being used for purposes beyond what they were originally intended for, and they’re being retained indefinitely without consideration for whether their original purpose has been satisfied.
It should be noted that the medical industry is regulated by more specific laws than omnibus data privacy laws like the CPRA and GDPR. Still, this story illustrates how privacy concerns can crop up in almost every aspect of life (like medical care for a newborn) and how essential the principles behind data privacy legislation really are.
Privacy concerns prompt states to reexamine storing newborns' heel blood tests
Within the first 48 hours after birth, doctors prick newborn infants’ heels to test their blood for serious genetic and metabolic issues. Because this test has such a large impact on public health, many states mandate it to be done and don’t require parental consent. However, the test also produces excess samples; these samples are sometimes stored for years and used for purposes ranging from third-party research to criminal investigations. The lack of disclosure and consent gathering around this practice has recently spurred multiple lawsuits.
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3-month countdown to 2023’s state privacy laws
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