New Jersey Wants Your Baby’s Genes

Mandatory genomic sequencing of all newbornsit 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,” theNational Cancer Institute websiteexplains. 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 NSARCsubcommitteehas 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, theNew Jersey Monitorreported.

Such schemes have attracted criticism from civil liberties groups such as the American Civil Liberties Union (ACLU) and the Institute for Justice (I.J.). “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,” Dillon Reisman, an attorney with the ACLU of New Jersey,toldtheMonitor.

Perhaps this wouldn’t be as worrying if New Jersey had strong safeguards on what could be done with the genetic material it already collects. But the state’s practices, as is, raise ample cause for concernand legal action. I.J. is currently representing a group of New Jersey parents ina class-action lawsuitconcerning the state’s newborn testing practices.

Like every other state, New Jersey requires hospitals to collect blood from newborn babies and turn it over to state health authorities, who use it to screen for various diseases. And like many states, New Jersey is less than transparent about this process. Parents are simply told that the testing is mandatory. They are not told that they can object on religious grounds. They are not told what the state does with newborn blood samples after health screenings are completed.

In fact, the state holds on to these blood samples for 23 years, putting no legal restrictions on how they can be used.

In at least one instance, a newborn blood sample was used to tie the baby’s father to a crime, according to the New Jersey Office of the Public Defender. Some states were foundto be selling the blood samples to researchers, orturning blood over to the Pentagon’s DNA registry.

Now, New Jersey parents are seeking a court order requiring the state to return or destroy the blood samples taken from newborns, or to get informed consent from parents to hold on to it. “The government cannot take your newborn’s blood to test for diseases, and then secretly keep it for 23 years and use it for other purposes, without your consent,” declared I.J., summing up its case,Lovaglio and Jedynak v. Baston and Scotto-Rosato, in anInstagram post.

The I.J. lawsuit serves as an important reminder that even absent a genomic sequencing mandate for newborns, states still collect sensitive bioinformation on residents starting at birth, and there are often few limits on how they can use it and no real safeguards on privacy. Taking advantage of the fact that new parents are too preoccupied to pay close attention to exactly what tests are being conducted and where the results will go, authorities are able to obtain and hold on to genetic material that parents might otherwise object to them having. Even when ?parents have the right to opt out, or to have the blood samples destroyed after testing, many aren’t aware they have those options.

As genomic sequencing becomes cheaper and more common, it’s all but a given that more states will begin adding the process to newborn testing regimes. It’s imperative that we work out safeguardsbeforethese programs are implemented.