DETROIT (CN) — The parents of nine Michigan children prevailed in their bid to prevent the state from keeping blood samples taken at birth for medical testing.
While the state argued it extracted and kept the samples purely for medical testing purposes as part of its Newborn Screening Program, a federal judge ruled Friday the Fourth Amendment applied to "the indefinite retention of samples that contain highly personal genetic information."
The practice of pricking a newborn's heel to collect a blood sample and test for various diseases is widespread across the country, and Michigan has required informed consent to send samples for outside testing since 2010.
Four parents, Adam and Ashley Kanuszewski, Shannon LaPorte, and Lynette Wiegand sued Michigan in 2018 claiming the state failed to obtain their consent before they took blood samples from their nine children or when the samples were stored indefinitely after testing.
The Sixth Circuit ruled in 2019 the state's conduct must be examined via strict scrutiny, and following several more years of litigation, a bench trial was held this past February. In the interim, Michigan agreed to destroy over 3 million samples stored in Lansing.
U.S. District Judge Thomas Ludington, a George W. Bush appointee, ruled late Friday and rejected Michigan's claim the Fourth Amendment does not apply because parents have always been free to request the destruction of the samples, or "blood spots," after testing.
"The Fourth Amendment right at issue here belongs to the infants," he said, "who are all still minors, which merits closer scrutiny."
The use of the samples for medical testing does not grant blanket Fourth Amendment immunity either, according to Ludington.
"The unique and sensitive nature of genetic information — which now includes personal and private details about a person's health, ancestry, vaccinations, and potential future health risks — has increased the potential implications of genetic information, making it even more vital to protect this information from unwarranted government intrusion," he said.
"Even within the confines of medical and law-enforcement purposes," Ludington continued, "the retention and usage of blood samples bear implications that tread on personal privacy rights. The lack of informed consent, and an overreliance on the notion of public education as a coverall, obfuscates the serious nature of the situation — taking and keeping blood from infants who are unequipped to consent, and whose parents are often inadequately informed or incapable of being informed."
Michigan argued the invasion of privacy was minimal, or "de minimis," and required application of an exception to the Fourth Amendment, which Ludington said would "require an unreasonable leap in logic."
While he lauded the state's efforts to identify and treat rare illnesses in newborns as quickly and accurately as possible, Ludington emphasized there is no need to store and maintain blood spots indefinitely.
"In ascribing broad, benevolent purposes to the retention of plaintiffs' residual dried blood spots and data, defendants impermissibly appeal to our communal instinct," he said. "The Fourth Amendment is not meant to be pruned back by such 'utilitarian calculations,' however laudable the outcome may seem."
As for the relief to which the parents are entitled, Ludington acknowledged his decision required "a delicate balance," and chose not to grant a declaratory judgment.
Instead, he issued a permanent injunction that requires the state to mail each plaintiff a consent form with three, separate options.
First, the parents can choose to have their children's blood samples returned to them; second, the parents may request the blood samples be destroyed; third, the parents can provided informed consent to allow retention of the samples by the state, as well as the possibility they may be sold to or tested by third parties.
Michigan will be required to destroy any remaining copies of the nine children's blood samples within one year if it has not received informed consent from the parents.
The parents' attorney, Philip Ellison, of Outside Legal Counsel PLC in Hemlock, Michigan, was thrilled with the court's decision.
"The outcome correctly restores the rights of moms and dads to make the key decisions about the health and privacy of their children instead of some government bureaucrat," he told Courthouse News.
As the suit was not a class action, no broad relief was granted by Ludington, who pointed out his ruling applied only to the children of the plaintiffs.
The Michigan Department of Health and Human Services did not immediately respond to a request for comment.
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