LANSING, Mich. — A federal appeals court has ruled that Michigan’s practice of storing and using newborn blood samples for research without parental consent does not violate the U.S. Constitution. The decision reverses a lower court ruling that had previously sided with parents who said their rights were being ignored.
In Michigan, hospitals take a few drops of blood from nearly every newborn’s heel shortly after birth to test for dozens of rare but serious medical conditions. It’s a routine part of the state’s newborn screening program. After testing, the state keeps one blood spot in case a family wants it later and sends four or five anonymized spots to a nonprofit biobank for storage and possible research use. Parents are not asked for permission for this long-term storage or research.
Four families sued the state, arguing that their Fourteenth Amendment rights to direct the care of their children and their Fourth Amendment rights against unlawful search and seizure were violated.
A lower court agreed and ordered the Michigan Department of Health and Human Services to notify parents, obtain consent for further storage and research, and return or destroy previously collected samples and data. But the Sixth Circuit Court of Appeals overturned that decision.
In a 29-page opinion, the court found that once the samples are anonymized and disconnected from identifying information, their storage and use in research do not trigger constitutional protections.
On the Fourteenth Amendment claim, the court said the plaintiffs failed to show that the state’s handling of the blood spots interfered with medical decisions or violated parental autonomy.
“This is not a case about medical care,” the court wrote. “It is about the storage and research use of anonymized biological material.”
On the Fourth Amendment claim, the court said that because the samples were de-identified and stored without any link to the children, there was no search. As for seizure, the judges found that the families could not prove they had a legal right to control the samples under Michigan law.
The court also rejected concerns about future use of the samples in criminal investigations, calling those claims speculative and not ready for review.
As of now, Michigan’s program stores blood spots at the Michigan Neonatal Biobank for up to 100 years. The samples can be used by researchers and government agencies, but only after approval by a state-appointed board. Since 2010, the state has asked for consent before using samples in research, but it does not ask for consent to store the samples or use them to improve screening technology.
The ruling allows the state to continue its current practices, but the decision may not sit well with some parents.
Although the court relied heavily on legal definitions of privacy, property, and consent, the facts of the case raise uncomfortable questions: Should the state store genetic material from babies without permission? Should parents have more say in what happens to their child’s blood after it leaves the hospital?
For now, those questions remain unanswered. What is clear is that, under federal law, Michigan can keep doing what it’s been doing for decades—whether parents know about it or not.
