Personal Freedoms

published : 2023-11-08

Moms sue state over 'creepy' baby blood database, privacy concerns

New Jersey sued for secretly storing newborn blood samples for up to 23 years

Hannah Lovaglio holding her newborn baby, taken with a Nikon D850

Parents were horrified to learn their babies' mandatory newborn blood samples may have ended up in a vast database that has, in some cases, been shared with police. Now they're suing New Jersey health officials.

Hannah Lovaglio's first son entered the world a month early. Nurses bustled in and out of the hospital room during his first days of life and frequently pricked his heel to check his blood, Lovaglio recalled.

"I just trusted and assumed that everyone had my best interest in mind and my child's best interest in mind," she said. "So I didn't question much."

Unbeknownst to the new mother, New Jersey secretly stores newborn "bloodspots" for up to 23 years and has in some cases turned samples over to police, open records inquiries found.

More than 100,000 babies are born each year in New Jersey. State health officials say mandatory blood screenings identify about 150 newborns with rare and serious illnesses.

Now, Lovaglio and fellow mom Erica Jedynak have joined a federal class-action lawsuit that accuses New Jersey health officials of violating millions of babies' and parents' constitutional right to be free from unreasonable search and seizure.

Every state requires hospital staff to collect a baby's blood shortly after birth. The blood is then tested for a variety of health disorders like cystic fibrosis, hormonal deficiencies or other immunodeficiencies and congenital disorders.

In New Jersey, the screening identifies about 150 babies per year with serious illnesses, according to a handout hospitals give parents. Parents are not told that the state stores those samples for more than two decades, nor why.

A close-up shot of a nurse pricking a newborn's heel for blood test, taken with a Canon EOS R

Jedynak tried to opt out, but a nurse told her the screening was mandatory. After 26 hours in the hospital and an emergency cesarean section, Jedynak didn't have the strength to argue.

"It's a very creepy practice," Jedynak told Fox News. "My son's blood has his genetic information. It is unique to him and I actually consider that bodily property."

The baby blood database came to light last year when public defenders discovered police had used a newborn's sample to charge the child's father in a 1996 cold case. State officials later admitted the newborn blood laboratory had received five subpoenas from police agencies over about five years, the New Jersey Monitor reported.

"New Jersey has kind of, on their own, decided 'we're going to keep this [blood] and we can do whatever we want with it and we're not going to tell anybody,'" said Brian Morris, an attorney with the civil rights law firm Institute for Justice, which filed the class-action suit last week.

Keeping the blood samples without a warrant or informed consent violates children's Fourth Amendment right against unreasonable searches and seizures, the lawsuit argues.

The suit names the acting commissioner of the state Department of Health and the assistant commissioner of the department's family health services division as defendants. Department of Health officials declined to comment on the lawsuit and did not respond to questions about what happens to newborn blood spots after screening is complete.

Morris said IJ hopes to force New Jersey officials to reveal all the ways it has used the stored blood spots and either obtain informed consent from parents or destroy the samples.

But he pointed out that other states have retained newborn blood spots on the down low as well.

Erica Jedynak expressing concern as she holds her baby, taken with a Sony A7 III

In 2010, Texas was caught turning baby blood spots over to the Pentagon to help build a DNA database that could be used to identify missing persons and crack criminal cases. Both Minnesota and Michigan let researchers use the samples.

Hannah Lovaglio said she's grateful for many of the liberties afforded to her in New Jersey and hopes the state will destroy the stored samples and "make a plan for transparency and consent moving forward."

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"New Jersey, while it's one of the worst of the worst states, is not the only state that's doing this," Morris said. "We're hoping that this federal lawsuit can establish precedent that then we can use elsewhere."

To hear more from Lovaglio and Jedynak, click here.

Ramiro Vargas contributed to the accompanying video.

Hannah Ray Lambert is an associate producer/writer with Fox News Digital Originals.