Parents Contest New Jersey's Infant Blood Spot Storage

Published Date : 10/22/2025 

A group of parents in New Jersey is filing a constitutional challenge against the state's practice of retaining newborn blood samples, citing concerns over property and privacy rights in the age of advanced AI and genetic analysis. 

In Trenton, New Jersey, a group of parents has reignited a legal battle against the state’s long-standing practice of retaining blood taken from newborns. They argue that this practice violates property and privacy rights, especially in light of the rapid advancements in AI and genetic analysis. The amended complaint, filed on October 6 in the U.S. District Court for the District of New Jersey, follows U.S. District Judge Georgette Castner’s August ruling dismissing the earlier lawsuit. The judge ruled that the plaintiffs failed to show a possessory interest in their children’s residual “blood spot” samples.

The parents contend that the state’s mandatory newborn-screening program unlawfully keeps residual blood samples for years without informed parental consent. “People’s property and privacy interests in their blood and genetic material do not dissipate when that blood is taken physically from inside their bodies by state action,” the parents’ attorneys wrote. “The children never voluntarily gave their blood to the state, and New Jersey never sought or received consent.”

Under New Jersey law, hospitals must draw several drops of blood from each newborn’s heel within 24 to 48 hours of birth and send the sample to the New Jersey Department of Health’s Newborn Screening Laboratory. This is to test for 61 rare but serious metabolic and genetic disorders, including spinal muscular atrophy and sickle-cell disease. More than 110,000 babies are tested annually in the state. The controversy centers on what happens after the screening. Until recently, the state stored identified blood spot samples for up to 23 years.

In June 2024, the Department of Health announced that blood samples from healthy newborns will be destroyed after two years, while samples from babies who test positive for any screened disorder may be kept for up to ten years before being de-identified. Destruction of long-retained identified samples began in November 2024, and by mid-2025, state officials reported that more than 60 percent of those samples had already been destroyed.

The controversy erupted after a 2022 investigation by the Office of the Public Defender and the New Jersey Monitor revealed that state police used a newborn’s stored blood sample to help identify the child’s father in a criminal case without the family’s knowledge or a traditional warrant. Subsequent reporting showed that multiple law enforcement agencies had issued several grand jury subpoenas over the years to access specimens from the newborn-screening program. Court filings later revealed that at least four law enforcement agencies had issued five grand jury subpoenas over roughly five years to access samples from the program.

One of the parents said she originally agreed to the “mandatory” heel stick test in 2021 without realizing the sample might be retained for decades. “It makes me uncomfortable knowing this information could be used by private third parties, law enforcement, or any other government agency,” she said. New Jersey’s case is one of several in the U.S. challenging the retention and secondary use of infant blood spot samples. In Texas, parents sued the state’s health department in 2009 after discovering millions of samples were shared with commercial labs and the Department of Defense’s DNA Identification Laboratory without consent. Texas ultimately settled and destroyed more than five million samples.

In Minnesota, a 2011 state-supreme-court decision found that newborn samples qualified as “genetic information” under its Genetic Privacy Act and required consent for any use beyond screening, leading to the destruction of 1.1 million stored samples. In Michigan, a federal judge in 2023 ordered parents be allowed to reclaim or destroy their children’s samples, but in 2025, the Sixth Circuit reversed that ruling, upholding the state’s retention policy.

Together, these cases reflect growing tension between the recognized benefits of newborn screening, which can save lives by detecting treatable disorders early, and concerns about how much control families retain over the biological material taken from their children and how government and private actors might use it. The plaintiffs argue that advances in genetic technology magnify the risks of storing such material. They warn that emerging AI-driven genomic tools could make it easier to infer sensitive information, from ancestry to medical predispositions, heightening the need for strict limits on how the state retains and analyzes newborn blood.

Recent advances in AI-driven genomics allow researchers—and potentially governments—to infer ancestry, medical predispositions, or even facial features from DNA samples. One parent said she became especially alarmed after hearing state health officials discuss integrating genomic sequencing into future newborn-screening programs. New Jersey health officials argue that the newborn screening program serves an essential public health function. Residual blood spot samples, they say, are used for quality control, test validation, and research into new disorders.

Under the June 2024 policy, the Department of Health must destroy identified newborn blood samples after two years unless a parent or guardian specifically requests extended retention. Any research conducted with the samples must use de-identified material, unless parents have given written consent for identifiable use. New Jersey Attorney General Matt Platkin issued a parallel directive to further tighten law enforcement access. It allows police to seek newborn samples only in “genuinely exceptional circumstances,” subject to review by the Division of Criminal Justice and generally requires a court-issued warrant or subpoena rather than routine grand jury subpoenas.

Health officials maintain that no identified specimen can be shared with outside entities without parental approval. The plaintiffs, however, argue that these protections exist only in agency policy, not in statute, and therefore fail to prevent or account for past unauthorized access. The lawsuit, brought with the assistance of the Virginia-based Institute for Justice, claims that long-term retention and potential uses of the blood spots violate the Fourth Amendment’s protection against unreasonable searches and seizures and the Fourteenth Amendment’s guarantee of parental autonomy.

“It was the kids’ blood when it was taken out of their bodies,” said senior attorney Robert Frommer. “It’s still the kids’ blood, and the government needs to justify why it gets to hold on to it.” Judge Castner’s August decision dismissed the case, ruling that once the blood is separated from the body, it no longer constitutes property in a constitutional sense, and so the plaintiffs lacked a possessory interest. The new filing asks the court to overturn that logic, arguing the uniquely genetic nature of the material keeps it linked to identity even after removal.

If certified as a class action, the case could affect more than 100,000 families each year in New Jersey. Bioethicists say the legal fight underscores a broader reckoning over how governments treat genetic material collected for public health purposes. Dried blood spot repositories nationwide now hold samples from hundreds of millions of Americans. Some states share de-identified specimens with research institutions or commercial partners under confidentiality agreements not always disclosed to parents.

Critics say when those capabilities are paired with residential or law-enforcement uses, even an opt-in model can turn into warrantless surveillance by another name, with consent overshadowed by social or institutional pressure. The New Jersey Department of Health has moved to dismiss the amended complaint, maintaining that the policy changes already address parents’ concerns and that residual specimens are critical to public health. The plaintiffs insist that only explicit opt-in consent will satisfy constitutional protections. The court’s decision in the coming months may ripple nationally as states reconsider how to update decades-old screening laws to reflect modern genetic and AI capabilities. 

Frequently Asked Questions (FAQS): 

Q: What is the main concern of the parents in New Jersey?

A: The main concern of the parents is that the state retains newborn blood samples for years without informed parental consent, potentially violating property and privacy rights.

Q: What changes has the New Jersey Department of Health made regarding the storage of blood samples?

A: The department announced in June 2024 that blood samples from healthy newborns will be destroyed after two years, and samples from babies who test positive for disorders will be kept for up to ten years before being de-identified.

Q: Why is the retention of infant blood spots controversial?

A: The controversy stems from concerns about how the retained samples might be used by law enforcement or third parties, and the lack of informed consent from parents.

Q: What are the potential risks of storing infant blood spots for long periods?

A: The risks include the potential for unauthorized access by law enforcement, commercial use, and the ability to infer sensitive information using advanced AI and genetic analysis.

Q: What is the legal basis of the parents' lawsuit?

A: The lawsuit claims that long-term retention and potential uses of the blood spots violate the Fourth Amendment’s protection against unreasonable searches and seizures and the Fourteenth Amendment’s guarantee of parental autonomy. 

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