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Judge: State must return or destroy blood samples taken without parents’ permission

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
A judge has found key parts of Michigan’s newborn blood-testing program unconstitutional in a challenge by four parents who raised concerns about how leftover samples are used long after screening for rare diseases.

A federal judge has ordered the Michigan Department of Health and Human Services to return or destroy blood samples taken from some newborn infants unless it gets permission from their parents to keep them in a state database.

The state requires health providers to take small blood blots from the heels of newborns to screen for 58 potential health problems. The tests, which have been a routine part of post-partum care since the 1960s, are not at issue.

The families sued because the state also permanently stores the samples and related data, including demographic information.

In a scathing decision that included a reference to the dystopian novel “Brave New World,” U.S. District Court Judge Thomas Ludington agreed with four families who claimed the state was not diligent enough in getting their permission.

“The state’s interest in gathering health data does not outweigh constitutional privacy protections,” he wrote.

“While the importance of newborn screening is undeniable, there are less intrusive alternatives that could serve the same purpose without retaining Plaintiff-infants’ samples indefinitely. For example, the State could implement a robust and thorough consent process rather than obtaining it within hours of one of the most painful and exhausting labors the human body can endure.”

The decision gives the state one year to contact the families and get their consent or destroy the samples and data.

The Michigan Department of Health and Human Services issued this statement in response to the decision:

“The Michigan Department of Health and Human Services (MDHHS) continues to fulfill its commitment to protect the health and well-being of all of Michigan’s residents, including its youngest and most vulnerable, newborn babies. MDHHS is reviewing this decision and determining next steps.”

Rick Pluta is Senior Capitol Correspondent for the Michigan Public Radio Network. He has been covering Michigan’s Capitol, government, and politics since 1987. His journalism background includes stints with UPI, The Elizabeth (NJ) Daily Journal, The (Pontiac, MI) Oakland Press, and WJR. He is also a lifelong public radio listener.
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