Following the threat of a potential court fight from a federal lawsuit, the state Attorney General announced Thursday the state will establish new limits on using newborn blood samples in criminal investigations.
The blood spots will also be retained for two years in a policy change, officials said. The spots were previously stored for 23 years.
“The Newborn Screening Program is an important public health program — and it is crucial for the success of the program that its information is kept private,” said Attorney General Matthew J. Platkin. “Today’s Directive adds new limits to ensure law enforcement agencies only seek such information in genuinely exceptional circumstances.”
Platkin issued the directive, which is effective immediately, this week after a group of parents in the state filed a federal lawsuit last fall over New Jersey’s little-known “baby blood stockpile.”
The parents and their attorneys were in talks with state officials to reach a settlement, but they stalled earlier this month. On June 4, both parties sent a status letter to the judge in the case, saying the lawsuit should once again move forward.
The state had until June 25 to respond to the initial complaint filed last year.
Despite the new state policies, the federal lawsuit will still continue, said Brian Morris, an attorney with the Institute of Justice, a nonprofit law firm that filed the lawsuit on behalf of the parents in November.
“These changes are a small step in the right direction, but the state is still refusing to do the one thing that will make its retention program constitutional: Ask parents for informed consent,” Morris told NJ Advance Media Thursday.
Since the 1970s, New Jersey has required every baby born in the state to be tested for different disorders. Newborns are pricked on the heel and their blood is collected on a paper card creating “blood spots,” within 48 hours of birth.
The blood sample is tested. Afterward, the unused blood left on the paper card, called a “residual dried blood spot,” is stored in a temperature-controlled room for 23 years, according to the lawsuit.
The state does not require parental consent of the newborn’s blood sample, the suit said. It also does not tell parents it will keep their baby’s blood following the testing.
No New Jersey law requires unused blood to be destroyed, nor does a law authorize the state to retain the sample, according to the lawsuit. The only way parents learn the sample has been retained is by looking it up on a third-party website listed on the bottom of the card they receive after the sample is taken, it said.
Under the new directive, agencies will have to submit written requests for approval from the director of the state Division of Criminal Justice explaining why an exceptional circumstance to use the blood samples in criminal investigations exists.
The requests will also need to be supported by specified forms of legal process, officials said.
Any documentary records or physical blood spots will only be obtained through a court-issued Dyal subpoena for medical records, instead of a grand jury subpoena, a search warrant based on probable cause or an administrative subpoena, officials said.
The state Department of Health also announced changes to its retention policy of newborn blood spots, officials said. Under the new policy, the state will retain the samples for two years, unless the parent or guardian opts for more or less retention.
It also outlines other limitations on the use and retention of the blood spots, including a restriction on law enforcement access consistent with the attorney general’s directive.
“Obviously two years is better than 23 years, but the length of the retention is irrelevant if the state refuses to get informed consent from parents,” said Morris, the Institute for Justice attorney.
The state attorney general “had the chance to make this program constitutional, but this certainly does not achieve that,” he added.
The lawsuit also alleged the state previously provided unused blood “from its baby blood stockpile to law enforcement officers on multiple occasions,” which was revealed following a lawsuit filed by public defenders in the state.
The officers were allegedly given the blood for investigations without obtaining a warrant.
The state also gives or sells the newborns’ blood to other third parties, the lawsuit alleged. “This could include, but is not limited to, researchers, companies, or other government agencies,” it said.
All 50 states and the District of Columbia require blood screening for newborns, but what happens to the remaining blood varies by state, the Institute of Justice previously said.
In Texas, baby blood was sold to the Pentagon and private companies without asking or telling the parents. Lawsuits in other states, including Texas, Minnesota and Michigan, have resulted in millions of newborn blood samples being destroyed.
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Brianna Kudisch may be reached at bkudisch@njadvancemedia.com.
