After enduring 26 hours of labor and an emergency cesarean section, northern New Jersey resident Erica Jedynak was finally alone with her newborn baby when a nurse walked into the recovery room.

The nurse said she was going to prick the infant's heel and take a few drops of blood "for testing." Jedynak said, "Oh no, thank you," but after the nurse told her the test was "mandatory," she agreed.

What had seemed like a routine hospital procedure in December 2021 took on a very different meaning a few months later, when Jedynak discovered that police in her state were using DNA extracted from newborns' blood — collected under the mandatory disease-screening program — to search for criminal suspects.

In all 50 states and the District of Columbia, health departments draw small blood samples from newborns' heels and test them for metabolic and genetic disorders. Some jurisdictions retain the samples only briefly; others keep them indefinitely.

Jedynak discovered that New Jersey stores babies' blood for more than 23 years, and that in some states, infants' DNA has been sold to pharmaceutical companies for research without parents' knowledge or consent. The more she learned about these programs nationwide, the more alarmed she grew.

"I had not heard about this, ever, and it was really concerning," she told Law360.

In 2023, Jedynak, the chief operating officer of a nonprofit that seeks to make the public education system more tailored to the interests and needs of students and their families, decided to act. She became a plaintiff alongside her husband, Jeremiah Jedynak, and fellow New Jersey mother Hannah Lovaglio in a lawsuit filed by the public interest law firm Institute for Justice challenging New Jersey's newborn blood storage practices.

The U.S. District Court for the District of New Jersey dismissed an earlier version of the suit in August, but is now taking a second look after the plaintiffs filed an amended complaint this month.

"Our point is: It was the kids' blood when it was taken out of their bodies. It's still the kids' blood, and the government needs to justify why it gets to hold on to it," said Robert Frommer, a senior attorney with the Institute for Justice. "The court didn't really seem to understand that."

The lawsuit in New Jersey is only one of the most recent flash points in broader litigation challenging various aspects of the newborn screening program that have gone up and down through courts across the nation for years.

In July 2023, a few months before Jedynak filed her complaint, a federal judge in Michigan sided with a group of parents challenging the state's retention of their children's blood spots, ordering the state's health department to either return the samples, destroy them or obtain consent to keep them in storage. In June, however, a Sixth Circuit panel reversed the ruling in the case, Kanuszewski v. Michigan Department of Health and Human Services , saying the state program did not violate the parents' rights.

A 2009 lawsuit filed against the Texas Department of State Health Services alleged that the state sold, traded and distributed newborn blood samples to third parties, including commercial pharmaceutical companies and the Armed Forces DNA Identification Laboratory, the U.S. Department of Defense's only laboratory for DNA testing of human remains, without parental consent.

The case, Beleno v. Texas Department of State Health Services, resulted in a settlement in which the state was required to destroy over 5 million residual blood spots.

And in 2011, in Bearder v. Minnesota Department of Health , the Minnesota Supreme Court held that newborn blood samples qualify as "genetic information" under the state's Genetic Privacy Act and that the state needed to obtain parental consent to use the genetic material for anything beyond the routine newborn screening. The decision paved the way for a 2014 settlement that led the state's Health Department to destroy 1.1 million blood spots.

Although still pending in the courts, the suit Lovaglio and the Jedynaks filed has already had an impact on the state's retention policies.

After the original complaint was lodged, the New Jersey Department of Health voluntarily shortened the blood retention period from 23 years to either two years — if the sample tests negative for all disorders — or 10 years if there is a positive. The litigation, however, continues on the issue of consent.

"The one thing they need to do is ask parents for consent," Frommer said. "And that's the one thing even their reforms just steadfastly refuse to do."

Extracting and Storing Baby Blood

In every state, after a baby is born, a nurse punctures the newborn's heel and retrieves several drops of blood, collecting them on a card.

In New Jersey, the card is sent to a screening laboratory run by the state's Department of Health, which then tests the blood for 62 genetic and metabolic disorders, including spinal muscular atrophy, sickle cell disease, severe immunodeficiencies and congenital heart defects. Results are usually produced within two weeks and sent to the hospital where the baby was born.

In July 2022, a lawsuit filed by the New Jersey Office of the Public Defender revealed that the state's Health Department had provided infant blood samples to law enforcement officers on at least five occasions.

In one instance, state police used genetic sequencing derived from an infant's blood sample and family research to identify a man suspected of raping a 10-year-old girl in Egg Harbor City, New Jersey, in 1996. The same man was later charged in a separate 2003 child rape case. The case stood out as one of the few known instances of newborn screening data being used beyond its intended public health purpose to pursue a criminal case.

The disclosure underscored a larger issue — not the testing itself, but what happens to the blood samples afterward.

The decades-old practice of collecting and screening newborns' blood itself isn't controversial, and Frommer emphasized that Jedynak's complaint doesn't challenge that process — only the state's retention of the blood samples without parental consent. State law neither requires the Health Department to destroy the blood spots, nor authorizes it to store them.

In response to the original complaint, the Health Department said that it would still provide blood spots to state and local law enforcement agencies, but that it would comply with the directives of the New Jersey Attorney General's Office.

The department did not respond to a request for comment.

Following the backlash ignited by the public defender suit, New Jersey Attorney General Matthew Platkin said that police will still be able to access the DNA collected through the newborn screening program "in genuinely exceptional circumstances" that he called "rare."

Over 100,000 babies are born each year in New Jersey. In total, the state has stored millions of blood spots from the newborn screening program, according to the amended complaint filed Oct. 6.

In the complaint, the plaintiffs bolstered their argument that collecting newborns' blood for genetic testing constitutes a medical procedure that parents have the right to control.

Calling the state's stance "perplexing," the plaintiffs argued that officials are dragging their feet in changing the policy to give parents consent to retain the blood spots, perhaps out of worry that many parents will end up not giving it.

"Defendants cannot sidestep the Constitution just because they think some parents will make, as defendants see it, the 'wrong' choice," the amended complaint said. "Parents, on behalf of their children — not New Jersey — control whether and how the state may intrude into their children's bodies for medical testing, including how the state may retain and use the blood and data obtained from that intrusion."
Legislative Efforts Seek Change

Legal challenges to the practice of sampling and retaining infant blood samples didn't only produce court rulings. It has also spurred legislative reforms in several states. These laws and policies often center on how long states may hold residual blood samples, for what purposes, and whether parental consent or opt-in mechanisms should be required.

A breakthrough came in March in Utah, where legislators passed a law — the first of its kind in the nation — requiring the state's health department to obtain written parental consent before the state may retain any blood drawn from newborns after the initial screening. Parents can choose to have their child's blood spot stored for seven years or only for the 90 days needed to complete the newborn screening process. Without consent, the sample must be destroyed after completion of testing.

"Many parents choose to store their child's blood for the full seven years because treatment and interventions can vary depending on if a child develops a condition that may not appear until later in life," Luisa Hansen, a spokesperson for the Utah Department of Health and Human Services, said in an email. "We are working to educate healthcare providers and families on the benefits of newborn screening and why, in limited cases, you may potentially want to use your child's blood spot samples."

Twila Brase, the co-founder and president of the Citizens' Council for Health Freedom, a nonprofit advocating for medical privacy that has been vocal on the issue of newborn screening for over two decades, told Law360 that Utah's law "puts the consent back and the control back into the hands of the parents, and takes it out of the state."

"They can't claim ownership to the child's DNA," she said.

Asked whether there is a balance between the right to privacy and the interest of law enforcement in using genetic material from newborns to pursue criminal investigations — as evidenced by the New Jersey cold case — Brase said that public safety alone doesn't justify intrusive surveillance.

"I don't think there's a balance," she said. "The fact of the matter is that we have certain rights, and crimes happen all the time, but we could have all of our rights taken away in order to protect us from criminals. We could have cameras in different places. We could have all sorts of mechanisms that take away our constitutional rights, our privacy rights, our patient rights."

In 2013, in a 5-4 ruling in Maryland v. King , the U.S. Supreme Court held that police may, without a warrant, collect and analyze a DNA sample from a person arrested for a serious offense as part of routine booking procedures.

In their amended complaint, Jedynak and Lovaglio told the court that in the 12 years since that decision, advances in DNA analysis and the rise of artificial intelligence have created an even higher risk of government intrusion into individuals' privacy, including in the context of their blood and the information it contains.

Jedynak and Frommer see the stakes rising, as well as a more urgent need for clear legal boundaries now.

When she learned about New Jersey health authorities' plans to incorporate genomic mapping, a technology able to sequence a person's complete genetic code, into the state's newborn blood testing program, Jedynak said she got worried.

"Particularly with AI," she said, "we will be in such a different landscape in the next six months, 12 months, and it makes it that much more important for genetic privacy."

--Editing by Orlando Lorenzo.

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