One such case where government encroachment into civil liberties is currently being debated concerns newborn blood spot (NBS) samples. Hospitals have been pricking newborns’ heels and collecting blood samples to test for genetic, metabolic, and developmental disorders since the 1960’s. All states require screening tests, and with good reason. If not caught early, many of the disorders can lead to brain damage, mental retardation, and even death. 2 Consequently, few parents dispute the need for the tests themselves—or give a second thought to the fate of their newborn’s blood samples after they take their baby home.
For years, NBS samples were only kept for a limited time before they were disposed of. 3 Then technology and science exploded in the1990’s, and everything changed. Scientists realized that the NBS samples contained a wealth of genetic information on just about every baby born in the United States. States began storing the NBS samples for research and, in some cases, even sent samples to biobanks. In 2003 and 2007, the US military received 800 NBS samples from the Texas Department of State Health Services in order to “help develop a mitochondrial DNA database for use by law enforcement.” 4 In Michigan, millions of NBS samples in a state warehouse were used to create a “neonatal biobank” in Detroit in the hopes of making the city a center for biomedical research. 5 The Minnesota Department of Health (MDH) also collected newborn blood samples and kept them indefinitely, sharing them not only with hospitals, but private research institutions 6 --all without parental consent.