Parents score victory in federal civil rights battle over baby blood spots

By: - September 19, 2022 7:02 am

A federal judge in Michigan ruled that the state was wrong to store and subsequently use newborn blood samples without parents’ informed consent. The case could impact similar battles around the country, including in New Jersey. (Getty Images)

A federal judge in Michigan last week sided with parents who say the state unconstitutionally stored, sold, and tested blood it collected from newborns to screen for rare diseases — a ruling that could be precedential for such civil rights battles in other states, including New Jersey.

Michigan statutes require “written, informed consent” for test subjects, which the state failed to get when it kept and subsequently used newborn blood screening samples — called dried blood spots — to track public health trends, sell to for-profit researchers, and identify crime victims, U.S. District Judge Thomas L. Ludington wrote Tuesday in a 32-page opinion.

“Michigan undoubtedly has some level of interest in detecting rare blood diseases in its infant population,” Ludington wrote. “But … defendants’ post-testing conduct is not necessary to effectuate that interest because ‘the health of the child is no longer a stake.’”

Like Michigan, some other states store and use blood spots for reasons beyond ensuring babies are healthy.

In New Jersey, which retains blood spots for 23 years, the Office of the Public Defender earlier this year discovered that law enforcement officers have used them without parental permission in crime investigations, including to identify a suspect in a rape case. That office, along with the New Jersey Monitor, sued the state in July after officials declined to divulge how New Jersey uses blood spots.

Philip Ellison is the Michigan civil rights attorney who represents the nine children and their parents in the 2018 case that led to Tuesday’s opinion. He celebrated Ludington’s decision as a victory for parents who should be the sole decision-makers in whether and how their baby’s blood is used.

“This decision is the first in the country to find newborn screening programs, as they’ve been designed here, unconstitutional,” Ellison told the New Jersey Monitor. “And Michigan is one of the few states that actually tries to get consent. A lot of states don’t even try.”

In New Jersey, a handout given to new parents tells them the blood screening is required by law, with no information for opting out either from the blood testing itself or the spots’ storage afterward. The sheet also does not inform parents that New Jersey retains samples for 23 years, nor what they might be used for during that time.

In his ruling, Ludington specifically questioned the use of blood spots in crime investigations.

“Victims of crimes can be identified by dental records, fingerprints, palm prints, skin prints, anthropometry, facial recognition, iris and retina identification, X-rays, CT scans, photographs, documents, circumstantial means (e.g., wedding ring), scars, tattoos, amputations, head fractures, orthopedic hardware, prosthesis, and the identification of a friend, relative, or other person,” the judge wrote. “With this torrent of techniques available to identify the deceased, defendants cannot possibly demonstrate that any of its conduct is necessary to identify victims of crimes.”

Any use of the blood spots without parents’ informed consent violates their constitutional rights to privacy and bodily autonomy, Ellison said. And foisting such vague consent forms on parents at such a chaotic time is especially unfair, he added.

“Asking moms and dads to sign a piece of paper that doesn’t say a whole hell of a lot 12 hours after their child is born — to sign away their rights — is the equivalent of asking someone to sign right after they got in a car accident,” Ellison said.

It’s unclear what Ludington’s ruling means for the millions of blood spots Michigan has in storage. The decision doesn’t address that, and Ellison’s lawsuit is not a class-action case.

“I think they have to go back and either ask for those consents or they have to destroy the blood samples,” Ellison said.

The ruling doesn’t end the case. Ludington said some issues Ellison raised are ones that will be decided at trial, which Ellison expects to happen early next year.

The ruling also doesn’t lessen the mystery about how states use blood spots, said Ellison, who recently discovered Michigan also retains blood samples collected from people who have HIV. Health officials cited the newborn screening program as justification for storing samples from HIV patients, Ellison said.

That, then, raises questions about what else Michigan — and other states — may be collecting and keeping for purposes far beyond their initial scope, Ellison said.

“A lot of states have been running COVID testing systems. We know states have created a ‘bio-dragnet’ from baby blood. What about COVID samples? Are they keeping those? You just don’t know,” he said.

That’s why transparency is key, he said. Without it, people are right to be suspicious, he added.

“If these are legitimate, good-for-society programs, they shouldn’t be trying to be hiding them. It should be very easy to find out information about them,” Ellison said. “If states are not out in the open, I think it’s because they’re not being run legitimately— and consistent with constitutional obligations.”

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Dana DiFilippo
Dana DiFilippo

Dana DiFilippo comes to the New Jersey Monitor from WHYY, Philadelphia’s NPR station, and the Philadelphia Daily News, a paper known for exposing corruption and holding public officials accountable. Prior to that, she worked at newspapers in Cincinnati, Pittsburgh, and suburban Philadelphia and has freelanced for various local and national magazines, newspapers and websites. She lives in Central Jersey with her husband, a photojournalist, and their two children.