Civil rights group sues New Jersey to stop secret storage, use of baby blood spots

After Erica Jedynak gave birth to her only child in 2021, she tried to opt out of the “heel-prick” test hospitals routinely do on newborns to detect disease.

The nurse insisted it was mandatory, the test turned up nothing, and Jedynak mostly forgot about it in the chaos of new parenthood. But after the Boonton mother later learned New Jersey health officials keep baby “blood spots” for 23 years for uses they never reveal, Jedynak was aghast.

Now, she and her husband Jeremiah are two lead plaintiffs in a new federal class-action lawsuit against the state of New Jersey that accuses state health officials of violating millions of babies’ and parents’ constitutional rights by secretly storing the blood spots in “a creepy database” without their informed consent.

The couple wants a judge to forbid the state from retaining blood spots for any length of time after disease screening, unless officials tell parents specifically how they will be used and get their informed consent for those uses. The spots should be destroyed if parents don’t consent, they say in a complaint filed Thursday in U.S. District Court in Trenton.

“The whole thing is really horrifying and alarming to me. It’s my son’s blood. It’s his genetics. It is so unique to him. And so I feel like it’s my job to protect him,” Jedynak said. “I did not have a choice to be able to opt out of it. This should not be an issue that’s in labor and delivery. The state should not enter that room. It’s a sacred room.”

The Rev. Hannah Lovaglio is another plaintiff in the lawsuit. She remembers nurses taking blood for both of her sons — now 5 and 1 years old — within hours of their births and having no qualms because “I assumed that everything that was happening was happening in the best interest of me and my child.”

Later, when she learned their blood spots lurk in secret storage somewhere, she was baffled, irritated — and scared.

“I don’t know why they want to store it because they’ve never had to say why. They just took it upon themselves to do it,” Lovaglio said. “It bothers me that there is a piece of sensitive, intimate information concerning both of my children that I have no control over. It scares me that the uses are unknown. I would never know if it’s sold, if it’s used for research, or if it’s used for things I might be fine with if I was given the choice to decide.”

The complaint names as defendants Kaitlan Baston, acting commissioner of the state Department of Health, and Nancy Scotto-Rosato, assistant commissioner for the department’s family health services division, which oversees the newborn screening program.

Health department officials did not respond to a request for comment.

Secret storage

More than 100,000 babies are born each year in New Jersey, meaning the state has stockpiled millions of blood spots from its decades-old newborn screening program. Yet a handout given to new parents doesn’t divulge that the state stores the samples for 23 years, nor explains why.

That stealthy storage sparked an uproar last year after the state Office of the Public Defender discovered state police used a newborn blood spot to charge the child’s father in a 1996 crime. The state refused to reveal how it used blood spots after the office and the New Jersey Monitor filed records requests under the state’s Open Public Records Act.

The office and Monitor then successfully sued to learn which law enforcement agencies had retrieved blood spots to investigate crimes instead of getting warrants to get a suspect’s DNA directly, as law requires.

The case caught the attention of attorneys at the Institute for Justice, the public-interest, libertarian law firm that filed Thursday’s lawsuit. The Virginia-based nonprofit specializes in Fourth Amendment cases to protect people from government overreach.

Brian Morris, an institute attorney, told the New Jersey Monitor this week that he hopes their new lawsuit will force New Jersey to disclose all the ways it uses stored blood spots —and end its mysterious storage and subsequent usages of the spots, at least unless parents give their explicit, informed consent.

“When we learned about what was going on in New Jersey, it was one of the most shocking, egregious Fourth Amendment violations we have heard of — the secret retention of blood for unknown uses,” Morris said. “New Jersey is this blank void where there’s no statute telling the health department that they can keep it, and there’s no oversight or limits on what they can do with it. It’s limited only to the health department’s imagination on how they want to use this blood.”

Attorney CJ Griffin, who represented the public defender’s office and New Jersey Monitor in the first lawsuit, has joined the latest lawsuit as local counsel.

“The goal of the OPRA lawsuit was just to learn more about how often the state was allowing prosecutors to access blood spots behind parents’ backs,” Griffin said. “In addition to learning it’s happened several times in the past few years alone, we also know the state has allowed other third parties to access the blood spots, without parents ever consenting or even being noticed. We’re asking the court to declare these practices unconstitutional and to stop the government in its tracks, requiring state officials to cease these practices unless they obtain informed consent.”

Notifying parents is especially critical given the breakneck pace of technological advancements and all the unanticipated ways baby blood spots could be used in the future, Morris said.

“We just don’t know what the government’s capabilities will be in 23 years,” he said. “If there’s not constitutional limits on what states can do with it, they can do whatever they want with it. They could sell it to third parties who could use it to predict how expensive covering your health care will be and sell that information to employers.”

The lawsuit argues that New Jersey’s secret storage and use of baby blood spots violates the Fourth Amendment’s right to be free of unreasonable searches and seizures.

“Let’s assume that them taking the blood and testing for diseases is a legitimate reason to take your blood, and they don’t need a warrant or a court order,” Morris said. “But the continuing seizure doctrine of the Fourth Amendment says as soon as that justification for the government taking your property is over, they either have to come up with a new justification that is lawful or they have to return it. From our perspective, New Jersey doesn’t have a lawful reason to keep blood spots once the testing is over.”

The lawsuit also claims blood spot storage without informed consent violates the Fourteenth Amendment’s due-process clause, which restricts the government from depriving citizens of their basic rights to life, liberty, and property.

In the context of newborn screening, parents have the right to the care, custody, and control of their children, including making medical decisions for them, Morris said.

A national issue

New Jersey isn’t alone in its clandestine cache of baby blood spots.

Such practices triggered similar lawsuits after parents learned Texas shared blood spots with the federal government to build a secret DNA database for crime investigation, Minnesota allowed medical researchers to use blood spots in various studies, and Michigan has sold them to for-profit companies for research and uses them in crime victim identification.

The lawsuits in Texas and Minnesota ended in settlements that impacted the programs only in those states. The Michigan lawsuit is ongoing and could impact newborn screening programs in the federal jurisdiction where that case is filed — the Sixth Circuit, which covers Michigan, Ohio, Kentucky, and Tennessee.

Morris hopes the Institute for Justice’s lawsuit will become precedential nationally.

“If they win that, then that’s a great protection for Michigan, Ohio, Kentucky, and Tennessee that then we can build off of, and then build off of this case, to then work our way until it’s a national rule,” he said.