Parents fight back after learning state keeps their babies’ blood for 23 years without telling them

Drops of blood from a baby’s heel are dropped onto paper for genetic disease screening (isayildiz via iStock)
Drops of blood from a baby’s heel are dropped onto paper for genetic disease screening (isayildiz via iStock)

Three New Jersey parents who sued the state government for keeping their babies' blood in storage for decades without their permission will now have their day in court after lawyers failed to reach a compromise.

In a class action complaint filed last November, Hannah Lovaglio, Erica Jedynak, and Jeremiah Jedynak accused the New Jersey Department of Health of violating their constitutional rights by stockpiling samples for use in "a creepy database".

Like every other US state, New Jersey requires all hospitals to take a pinprick of blood from every newborn baby to screen for genetic diseases, unless the baby's parents object on religious grounds.

Yet in the Garden State, the leftover blood is stored in a temperature-controlled room for 23 years – despite recent lawsuits that forced Texas, Minnesota, and Michigan to abandon such practices.

Though officials have not explained why the blood is kept, the lawsuit alleges that it is probably being shared with – and perhaps sold to – third parties such as researchers, medical companies, law enforcement agencies, or even the Pentagon.

"We proposed a straightforward solution that would ask parents for consent for the retention of any blood after the initial testing was completed," said Brian Morris of the Institute of Justice (IoJ), a libertarian non-profit that is funding the lawsuit.

"But the state ignored our written proposal and wanted to still retain blood after the testing was completed without first obtaining parental consent.

"If the state won’t agree to implement a constitutionally sound retention program, we’re happy to have a court make them."

The New Jersey Department of Health has not responded to the lawsuit in court and did not immediately respond to a request for comment from The Independent.

New Jersey's blood retention policy came to wider public attention in 2022 when it was revealed that state health officials had handed over samples to law enforcement officers seeking DNA evidence without any warrant.

In 2009, the state government of Texas agreed to destroy roughly 5.3m baby blood samples as part of a settlement following a similar lawsuit over its newborn screening program.

At the time, some scientists argued that the decision would harm future medical research into unusual birth defects and other rare diseases.

But in 2010, The Texas Tribune revealed that state officials had secretly shared blood samples not only with medical researchers but also with the US Department of Defence, which wanted to build a national DNA database to help find missing persons and crack cold cases.

"On information and belief, [the plaintiffs] expect that New Jersey is likewise turning over their children’s blood from its newborn blood stockpile to third parties including the Pentagon," the IoJ's lawsuit said.