NJ Has Been Secretly Keeping the Blood of Every Baby Since 1970s
Every year, about 100,000 babies are born in New Jersey.
Each newborn undergoes a blood test to screen for more than 60 diseases, under state law. Those blood samples are then stored by the state for 23 years each — without first getting parental consent.
It’s the lack of consent and unlimited opportunity to use the samples that are the root of a federal, class action lawsuit filed by several NJ parents.
With legal support from the Institute for Justice, they are seeking to have the state's actions declared as unconstitutional.
The lawsuit also requests that New Jersey first seek informed consent from legal guardians to store such newborn blood samples for “specific, identified purposes.”
When asked for comment, a spokesperson for the state Health Department said they do “not comment on pending litigation.”
Baby blood samples spark concern in NJ, other states
Under state law, babies born in New Jersey are required to have blood drawn and tested for at least 61 diseases — including cystic fibrosis, hormonal deficiencies and other immunity issues.
The NJDOH Newborn Screening Laboratory tests “more than 110,000 dried blood spot samples each year from newborns in New Jersey,” according to its website.
All states perform similar tests and the lawsuit does not take issue with the initial genetic analysis and health screening, according to Institute for Justice attorney Brian Morris.
Instead, it is the blood spot card being filed away that has raised a giant red flag for civil liberty organizations.
“The state of New Jersey keeps record of bloodspot screening results for 23 years,” according to the NJDOH website, in response to a question about families moving out of state who might need to access a child’s screening results.
The state does not ask parents for consent and does not inform them ahead of the sample being taken that the residual blood will be stored for this lengthy period of time.
New Jersey’s program “likewise violates the constitutional rights of every parent and of every child born in New Jersey since the newborn screening program began in the 1970s,” according to the lawsuit filed in Trenton federal court.
“Parents have a fundamental due process right to raise their children without undue state interference,” the suit continues, which also said that the claim on behalf of children themselves is a violation of their fourth Amendment rights.
Morris said the Institute does not believe there is a constitutionally justifiable reason for keeping the blood samples past the disease testing, without parental consent for specific uses.
In NJ, the plaintiffs are two Boonton parents of one child and a Cranbury mother of two.
Previously, the only way parents could find out about such samples being stored and used by third parties was by looking it up, using information on the bottom of a small card they’re given after the blood draw at the hospital — along with a full packet of new parent resources including “safe sleep” and baby feeding practices.
“It’s incredibly misleading for the state to tell parents they are simply drawing blood from their babies to test for diseases when it could be sold to third parties or used by other government agencies to build invasive databases or registries,” Morris said in a written announcement.
“As Texas and other states have shown, these concerns aren’t hypothetical.”
NJ police departments have used newborn blood samples in casework
The Institute for Justice referenced a lawsuit filed last year, involving the use of NJ blood samples by police departments investigating at least five criminal cases.
Last winter, New Jersey Monitor reported that at least four police departments in NJ have used the newborn blood sample database to investigate criminal cases.
“Our suit was to determine whether any other police agencies had used infant blood in criminal investigations before. They had. We were not provided with the names of the specific departments,” Jennifer Sellitti of the New Jersey Office of the Public Defender said in a response to New Jersey 101.5.
In January, a judge ordered that the names of the four police departments be revealed within two weeks’ time.
“They refused to provide them,” Sellitti continued, adding the department never sought specific names, just “sanitized records.”
Other states have dealt with similar consent lawsuits
New Jersey is not the only state facing legal issues stemming from this murky practice.
Texas, Minnesota, and Michigan have all faced lawsuits over the storage of newborn blood samples without informed consent from parents.
In Texas, newborn blood samples being stored were also shared with the Pentagon to create a national registry, according to Morris.
A 2009 lawsuit in Texas led to the state destroying 5.3 million blood samples. All blood samples taken after 2012 must be destroyed after two years in Texas.
In Minnesota, a 2014 settlement ordered that 1.1 million blood samples be destroyed.
Last year, the state of Michigan agreed to destroy 3 million blood spots; that lawsuit is still active.
While all 50 states and Washington D.C. require blood screening for babies, w"hether a state will destroy leftover newborn blood, return it, or keep it with a form of parental consent varies on a state-by-state basis," according to the Institute for Justice.
"Parents have a right to know how their children's blood is being used," Sellitti previously said to Law360.
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