States must craft policies to rein in unbridled police access to newborn blood samples.
Nearly every baby born in the U.S. has blood drawn in the immediate hours after their birth, allowing the baby to be tested for a panel of potentially life-threatening inherited disorders. This is a vital public health program, enabling early treatment of newborns with genetic disorders; for them, it can be the difference between a healthy life and an early death. But recent news suggests that police are seeking access to these newborn blood samples in criminal investigations. Such use of this trove of genetic material — to hunt for evidence that could implicate a child’s relative in a crime — endangers public trust in this vital health program and threatens all Americans’ right to genetic privacy.
A public records lawsuit filed in New Jersey this month details how police subpoenaed a newborn blood sample to investigate a 1996 cold case. While law enforcement’s desire to use these blood samples in criminal investigations was always a possibility — and one the ACLU has opposed — the increasing use of Investigative Genetic Genealogy (IGG) has only increased the government’s interest in easy access to people’s DNA. While few have heard of IGG, many have heard of its application to cold cases: One high-profile example is the 2018 identification of the Golden State Killer as former police officer Joseph James DeAngelo Jr. In IGG, DNA is isolated from a sample left at a crime scene and a rich genetic profile is created and uploaded to a genealogy website in order to map out family trees. In just four years since IGG first became public, its documented use by police has rapidly grown to nearly 200 investigations.
The government has already gone to shocking lengths to obtain DNA samples without a warrant, including lying to a suspect’s family members to obtain their DNA — but the New Jersey investigation represents the first public instance of them turning to newborn blood samples. This threatens both privacy and public health. A failure to act now could mean widespread loss of genetic privacy at the hands of police.
DNA holds our sensitive personal information. Indeed, that’s why the newborn screening program exists: to detect inherited medical conditions from our blood sample that could lead to things like permanent intellectual disability and major health problems if not detected early enough. Allowing the government to access samples with such sensitive information for reasons other than public health would seriously threaten our privacy — particularly given that our DNA reveals such information not only about us, but also our family members.
This newborn screening system relies on public trust. It exists because public health officials agree that the good outweighs the bad — the temporary pain to the newborn and the cost to the parents are well worth the prevention of life-threatening medical conditions among the almost 1 in 300 newborns found to have a genetic disorder. But that delicate balance is thrown off when the government turns to that same data for other purposes, including criminal investigations.
There is no uniform national policy for how newborn screening is conducted. Each state sets its own policies governing which diseases it tests for and the length of time the sample is kept. Parent groups and other privacy advocates have long voiced concerns about these state screening systems. As a result of litigation that argued that keeping blood samples leftover from the screening tests violates privacy rights, some states destroyed samples en masse and have limited how long future ones are stored. Still, the range of storage for states varies from a few months to indefinitely.
Read More: Police Are Using Newborn Genetic Screening to Search for Suspects