New Jersey Stores Newborn Blood Samples Without Parental Permission, Civil Rights Class Action Claims

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A proposed class action lawsuit alleges that New Jersey has unconstitutionally retained blood samples from every child born in the state without notice or informed consent.

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The 54-page amended complaint explains that when a baby is born in New Jersey, a pinprick of their blood is collected and sent to the New Jersey Department of Health’s (DOH) Newborn Screening Laboratory, where it is tested for conditions such as cystic fibrosis, hormonal deficiencies and other congenital disorders. The civil rights lawsuit alleges that rather than destroy any unused blood after testing, the state has a policy whereby it stores blood samples for years in a temperature-controlled room with “no oversight or limits” on how the blood can be used or with whom it can be shared.

The suit contends that by retaining newborns’ blood without parental consent, the defendants—the New Jersey DOH commissioner and the assistant commissioner for the Division of Family Health Services, which oversees the newborn testing program—have violated parents’ constitutional right to due process and unlawfully seized children’s genetic information.

“New Jersey’s stockpiling of blood from the newborn screening program absent voluntary, informed consent violates [the plaintiff parents’] fundamental right to make medical decisions for their children,” the filing charges.

While no New Jersey statute mandates that unused blood be destroyed, no state law authorizes the defendants to retain the samples either, the complaint shares.

Before this class action lawsuit was filed in early November 2023, parents were never informed that the state would store their baby’s blood after testing was completed, the case claims. In response to this suit, the defendants announced certain changes to the newborn screening program in June and July 2024, the filing says.

For one, the retention policy was shortened from 23 years to either two or 10 years, depending on whether a test is positive or negative, the complaint relays. Per the lawsuit, for negative results, the defendants promised to obtain parental consent to continue storing the blood samples after the two-year period and for up to 10 years, after which they would be destroyed.

In addition, the screening program handout provided to new parents at the hospital was revised to include a link to a “Newborn Screening Bloodspots Destruction Request Form,” which gives parents a chance to opt out of having their baby’s sample retained, the suit states. However, the case contests that “this ‘opt-out’ option is not the same as voluntary, informed consent” under the U.S. Constitution, which the state still fails to obtain.

“If the state obtains voluntary, informed consent from parents to retain their children’s blood, [the defendants] will comply with the Constitution,” the lawsuit asserts. “It really is that simple.”

What’s more, New Jersey has also given unused samples from its “baby blood stockpile” to third parties without parental permission, the suit alleges. For example, following a lawsuit filed by the New Jersey Office of the Public Defender, it was determined that the state has given unused blood samples to law enforcement agencies on at least five occasions, the case claims.

The New Jersey newborn blood testing lawsuit looks to represent anyone born in New Jersey since November 2, 2000, whose blood has been or will be retained by the state’s newborn screening program. The suit also seeks to cover any parents or legal guardians of minors born in New Jersey since November 3, 2005, whose blood has been or will be retained by the state program.

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