Michigan wins appeal in legal challenge to how it handles extra blood samples from newborns
This July 2022 photo shows a lab in Lansing, Mich., where the state health department tests blood from newborns for more than 50 rare diseases. (Joey Cappelletti/Report for America via AP, File)
DETROIT (AP) — A yearslong effort to challenge Michigan’s practice of storing millions of dried blood samples from newborn babies has been turned upside down by a federal appeals court, which threw out key decisions in favor of parents who said the policy violated their rights.
In a 3-0 opinion, the court found nothing unconstitutional about how the state Department of Health and Human Services handles leftover samples, which are called blood spots.
The 2018 lawsuit by a small group of parents was not aimed at stopping the routine procedure of pricking the heels of newborns to draw blood and screen for diseases, a longstanding practice in hospitals across the United States.
Rather, the case centered on what happens to leftover spots and the health data extracted from them — and whether parents feel truly informed when they’re presented with a consent form about the process at the tumultuous time of birth.
Attorneys argued that parents might not know that health researchers pay the state to use spots stored in the Michigan Neonatal Biobank in Detroit. In very rare circumstances, police also can get access.
“Although plaintiff-parents strongly oppose defendants’ storage and research of their children’s blood spots and data, we cannot elevate every concern to a ‘fundamental right,’ ” wrote Judge Richard Griffin of the 6th U.S. Circuit Court of Appeals.
The court noted that blood spots stored at the Biobank are labeled with a code and not someone’s name, which may ease privacy concerns for some.
The parents failed to prove their property interest in blood spots and related data, the court said Wednesday, setting aside the findings of U.S. District Judge Thomas Ludington.
“I’m extremely disappointed, but the battle isn’t over yet,” attorney Philip Ellison said. “We’re going to the U.S. Supreme Court. We think the 6th Circuit completely messed up the decision in this case.”
He said leftover blood spots from the children of parents he represents had been destroyed earlier in the litigation, though the appeals court decision means the state can keep related health data.
“With AI and the data the state has, we don’t know what the future holds,” he said, referring to artificial intelligence.
In a statement, Attorney General Dana Nessel said the latest decision means the state can continue “advancing medical research through privacy-protected” data.
The Health Department has defended the program. It notes that no blood spots are kept for research unless parents give permission, though the dried blood samples still will be stored for up to a hundred years even without permission.
Spots also can be destroyed upon request, but the number of people who have taken that step is small.
In 2022, at a separate stage of the case, the state agreed to destroy more than 3 million blood spots kept in Lansing, but millions more remain under its control.
Research using blood spots occurs in other states, including California, New York and Minnesota, where samples can be kept for decades.
In 2009, Texas agreed to destroy millions of blood spots that were stored without consent. Spots obtained since 2012 now are destroyed after two years unless Texas parents agree to have them maintained longer for research.