Michigan to Destroy Some Blood Spots in Fight Over Consent
The state of Michigan has agreed to destroy more than 3 million dried blood spots taken from babies and kept in storage in a partial settlement in an ongoing lawsuit over consent and privacy in the digital age.
At the state's direction, hospitals have routinely pricked the heels of newborns to draw blood to check for more than 50 rare diseases. That practice, which is widespread across the U.S., isn't being challenged. Rather, the dispute is over leftover samples.
A blood spot from each child is stored in Lansing while five more are sent to the Michigan Neonatal Biobank in Detroit for safekeeping under climate-controlled conditions.
Scientists can pay a fee to use the Detroit-stored samples for various research projects.
Since 2010, Michigan must have permission from parents to use spots for research. But attorney Philip Ellison argues that the program still violates constitutional protections against searches and seizures and might not be fully understood by parents who are presented with forms amid the fog of childbirth.
Ellison claims the consent form and a related brochure are vague, making no reference, for example, to the state collecting fees for blood spots used by scientists.
In May, after four years of litigation, the health department said it would destroy certain blood spots stored in Lansing over the next 18 months and stop adding to that inventory, according to an agreement filed in federal court in Bay City.
Those spots number 3.4 million, spokeswoman Lynn Sutfin said.
Sutfin declined to explain why the state agreed to get rid of them, citing the ongoing litigation. But in 2021, U.S. District Judge Thomas Ludington said the state had no specific permission from parents to keep a single leftover blood spot in Lansing.
The state has described them as spots that could be used by parents in case future health questions arise.
The agreement to destroy those spots doesn't end the case. Still in play: Millions that are under the state's control at Wayne State University in Detroit and available for research, including many that precede May 2010 when the health department began asking for parental consent.
The health department is defending how it runs the program. It emphasizes that no spots are stored for research unless parents or guardians give permission. Spots also can be destroyed upon request, though the number of people who take that step each year is very small.
A code — not someone's name — is attached to blood spots that are stored in Detroit, making privacy risk during research “very low,” the state said.