Lawsuit forces NJ to change secret use of newborn babies’ blood

👶 Newborn blood samples are required by law

⏳ NJ has kept them for 23 years, without parent consent

🔬 After lawsuit, state announces new policy

New Jersey’s longtime policy of storing newborn blood samples for decades is changing after the state was sued in federal court for allegedly violating families’ constitutional rights.

The lead attorney representing the class action suit said the new changes still fall short of informed consent.

Every year, about 100,000 babies are born in New Jersey. Each newborn has blood drawn to screen for more than 60 diseases.

Those blood samples have been stored by the state for 23 years without parental consent.

In November, several parents with legal support from the Institute for Justice launched the federal lawsuit.

The New Jersey Attorney General’s Office spoke with the litigants he Institute recently requested that the suit be resumed after talks stalled.

RELATED: NJ parents still sue over 'secret' storage of baby blood samples

On Thursday, Attorney General Matthew Platkin announced stringent new procedures in which law enforcement can request access to these blood samples.

The state Department of Health simultaneously announced that newborn blood samples would now be kept for two years while also giving parents an option to request in writing that they be destroyed sooner.

These modified policies were announced without any “heads up” to those leading the NJ class action suit.

“Informed consent under the Fourth Amendment means asking for permission beforehand. This flips the Fourth Amendment on its head: The state gets to keep the blood (still for however long it decides) unless parents figure out how to stop it,” Institute for Justice attorney Brian Morris said in an email response to New Jersey 101.5.

When will filed blood samples be destroyed?

State health officials said under the new policy, destruction of existing samples would not begin until Nov. 1 and would take some time.

For samples taken after this new policy is fully in place, parents and legal guardians can at any time after the initial screening direct the state to destroy the blood spot by submitting a Destruction Form, available here online.

During the two-year storage, what will happen to the samples?

Blood spots will still be used for their primary purpose of disease screening.
After that, the state said it would de-identify samples — removing information about the specific child —before then storing for routine laboratory quality assurance and quality control.

It would also be used toward the development of new tests for disorders until the two-year window is up.

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Why two years?

The new length of time for blood sample storage is in line with at least Texas, which dealt with a similar lawsuit over a decade ago.

Can parents allow for samples to be kept longer?

Yes, parents and legal guardians who want the state to store newborn blood samples for more than two years may request that they be kept for up to ten years, by submitting an Extended Retention Form, available here.

Also, any blood sample that tested positive for any of the 61 conditions in the newborn screening will be kept for up to ten years — after the child’s identifying information has been removed.

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What are the new chances that these blood samples can be accessed by police?

Going forward, any documentary records or physical blood samples can be obtained from the Newborn Screening Program only through a court-issued Dyal subpoena for medical records, Platkin announced on Thursday.

This directive was effective immediately.

A grand jury subpoena, search warrant based on probable cause or an administrative subpoena (or appropriate court process) issued in a missing-persons or unidentified-body case would not be enough to request such access, the Attorney General said.

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