The state of New Jersey has been sued twice over its infant DNA program. Like the rest of the nation, New Jersey hospitals collect a blood sample from newborns to test them for 60 different health disorders. That part is normal.
But New Jersey is different. Rather than discard the samples after the testing is complete, it holds onto them. For twenty-three years. That’s unusual. And it’s a fair bet that almost 100% of New Jersey parents are unaware of this fact.
There’s a reason parents don’t know this and it has nothing to do with parents just not paying attention when this test is performed. According to the lawsuits, New Jersey healthcare professionals do what they can to portray the testing as mandatory, even though it isn’t. They also take care to keep parents uninformed, never once informing them that they are free to opt out of the testing for religious reasons.
The state, however, is fine with this. The biggest beneficiary of this program is state law enforcement, which can freely obtain these DNA samples without having to go through the trouble of obtaining a warrant. Warrants are needed to obtain DNA samples from criminal suspects, but there’s nothing stopping cops from searching the DNA database for younger relatives of the suspect whose DNA might still be in the possession of the state’s Health Department.
That’s why the state is facing multiple lawsuits, making it an anomaly in this group of 50 states we Americans call home. And that’s likely why the state’s health officials are trying to healthwash this by crafting a new narrative for this uniquely New Jersey handling of infant blood tests. Here’s Elizabeth Nolan Brown with a summary of the rebranding for Reason.
Mandatory genomic sequencing of all newborns—it sounds like something out of a dystopian sci-fi story. But it could become a reality in New Jersey, where health officials are considering adding this analysis to the state’s mandatory newborn testing regime.
Genomic sequencing can determine a person’s “entire genetic makeup,” the National Cancer Institute website explains. Using genomic sequencing, doctors can diagnose diseases and abnormalities, reveal sensitivities to environmental stimulants, and assess a person’s risk of developing conditions such as Alzheimer’s disease.
Ernest Post, chairman of the New Jersey Newborn Screening Advisory Review Committee (NSARC), discussed newborn genomic sequencing at an NSARC meeting in May. An NSARC subcommittee has been convened to explore the issue and is expected to issue recommendations later this year. It’s considering questions such as whether sequencing would be optional or mandatory, the New Jersey Monitor reported.
The state wants to take what’s already problematic and make it a privacy nightmare. But, you know, for the children. The framing encourages people to think this is about early detection and preemptive responses to expected long-term health problems.
And that’s not to stay it won’t have the stated effect. The problem is the state hasn’t been honest about its newborn DNA collection in the past and health care providers (whether ignorant of the facts or instructed to maximize consent) haven’t been exactly trustworthy either.
Now, the state wants to expand what it can do with these blood samples despite not having done anything to correct what’s wrong with the program as it exists already. This just opens up additional avenues of abuse for the government — something it shouldn’t even be considering while it’s still facing two lawsuits related to the existing DNA harvesting program.
The ACLU is obviously opposed to this expansion. The statement it gave to the New Jersey Monitor makes it clear what’s at stake, and what needs to happen before the state moves forward with gene sequencing of newborn blood samples.
If New Jersey adopts genomic sequencing, policymakers must create “a real privacy-protective infrastructure to make sure that genomic data isn’t abused,” said Dillon Reisman, an ACLU-NJ staff attorney.
“What we’re talking about is information from kids that could allow the state and other actors to use that data to monitor and surveil them and their families for the rest of their lives,” Reisman said. “If the goal is the health of children, it does not serve the health of children to have a wild west of genomic data just sitting out there for anyone to abuse.”
Maybe that will happen before this program goes into effect. But it seems unlikely. Given the history of the existing program, the most probable outcome is a handful of alterations as the result of court orders in the lawsuits that are sure to greet the rollout of this program. The state seems super-interested in getting out ahead of health problems. But it seemingly couldn’t care less about heading off the inherent privacy problems the new program would create.
