In new complaint, parents renew calls for New Jersey to stop storing baby blood

The Institute for Justice filed an amended complaint on Aug. 2, 2024, against the state of New Jersey for its practice of retaining, for years, blood samples hospitals take from newborns for disease screening. (Getty Images)

Parents who sued the state of New Jersey last year over its practice of retaining the blood hospitals draw from newborns for disease screening renewed their complaints Friday in an amended lawsuit , saying new restrictions meant to allay their concerns are “half-step reforms” that still violate babies’ and parents’ constitutional rights.

In response to the federal , class-action lawsuit, the state announced in June it would shorten how long it stores blood samples from 23 years to between two and 10 years and add restrictions on their use.

But attorney Brian Morris, who represents the plaintiff parents, said officials still fail to get informed consent to hold onto the samples, which are known as blood spots, beyond the initial disease screening.

“They chose to double down on keeping parents in the dark,” Morris said. “Today’s updated lawsuit makes clear that the state’s half-step reforms don’t do enough to respect the constitutional rights of New Jersey families.”

Hannah Lovaglio, a mother of two young sons from Cranbury, is one of the lawsuit’s plaintiffs.

“If the government wants to hold onto a child’s blood sample after the initial testing is done , they should have to get permission from the parents,” she said.

Spokespeople for Attorney General Matt Platkin did not respond to a request for comment.

The amended complaint comes after six months of settlement negotiations broke down between the state and the Institute for Justice , the Virginia-based public-interest law firm that represents the plaintiffs. That lawsuit came a year after the New Jersey Office of the Public Defender discovered that the state allows police to access blood spots to aid in criminal investigation and teamed up with the New Jersey Monitor to sue the state to learn more about how the spots get used for purposes parents didn’t authorize.

Under new rules state health officials announced in June, blood spots that test negative would be destroyed two years after testing is complete, while those that test positive will be deidentified and retained for 10 years. The rule changes are set to start in November, when officials said they would begin destroying stored blood spots of children older than two years , according to the complaint .

At the same time, Platkin issued a directive restricting use of blood spots to “rare” and “genuinely exceptional circumstances,” with law enforcement agencies required to first get approval from the director of Platkin’s criminal justice division.

But the amended lawsuit notes that such changes could be undone at any point and fall short of what officials should do — bar blood spots’ use for anything beyond disease screening and destroy them afterward, or secure parents’ informed consent if the spots are retained for any length of time.

“These changes are simple policy changes that could be changed in the next hour,” the complaint states. “These changes were not, for example, made in compliance with the Administrative Procedures Act, with a public comment period, etcetera. Rather, these policy changes could change again if Defendants simply issued a new press release.”

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