Baby DNA can be stored INDEFINITELY in government labs

Nearly every US-born baby has blood drawn to check their risk of about 60 rare diseases within hours of coming into the world.

What many parents may not know is that these DNA samples can be stored in a government lab indefinitely, allowing law enforcement access to blood for investigations into a child’s relative.

A 1996 cold case was solved last year after New Jersey police collected a baby’s DNA without a warrant to investigate the child’s father, grabbing the attention of some parents who are now suing state health officials over its storage practices.

Hannah Lovaglio, a resident of Cranbury and plaintiff, told DailyMail.com: ‘This is a true parent right’s issue. This is their body; this is their property taken from them from five years of being a minor, and the state is not required to give any justification.

New Jersey can store samples for up to 23 years, while others like California, Massachusetts and Maine are indefinite. 

‘It is deeply concerning [that they are] preying on the helplessness of a new parent,’ said Lovaglio.

‘In your most vulnerable moment, someone is taking something from your child, and you have no idea.’

Nancy Kearney, a spokesperson for the New Jersey Department of Health, which includes the Division of Family Health Services, told DailyMail.com: ‘The New Jersey Department of Health does not comment on pending litigation.’

Genetic newborn testing started in the 1960s with the hopes of detecting diseases and conditions that could kill a child or cause severe problems.

Nurses fill six spots on a special filter card when administering the screening that is then sent to a lab for testing, but leftover samples are stored for the specific allowed time.

According to the state of Minnesota’s website, samples are kept so that tests can be repeated, used to identify a missing or deceased child and for medical research. 

While data is sparse regarding how many samples have been stored, a report states that in 2009, 13.5 billion newborn blood spots were warehoused nationwide.

And reports show that most states have stored DNA since at least 2001. 

California began storing samples indefinitely in state-run biobank in 1983.

The state previously only filled five spots on the card but increased it in the 2010s. 

In December 2020, it was revealed that investigators in California had sought access to newborn screening samples for criminal investigative purposes and made at least one arrest using the genetic material.

The Centers for Disease Control and Prevention in Atlanta, Georgia proposed a  databank of the DNA-filled newborn blood spots in 2002 and using them—seemingly without parent consent—for additional purposes beyond the infant genetic screening program, according to the Citizens’ Council on Health Care.

Some states, such as South Carolina and South Dakota, destroy the blood spots after a year or as soon as testing has been completed.

Other states that store newborn DNA for years have regulations to limit what can be done with the samples, and some, like Alabama and Arizona, let parents refuse blood retention.

Approximately 29 US states provide parents with forms to refuse to screen, including Alabama, New York and Nevada.

Institute for Justice (IJ) attorney Brian Morris, representing Lovaglio and Erica and Jeremiah Jedynak, told DailyMail.com: ‘New Jersey is among the worst. The biggest problem is that it is a black hole with no regulations governing this retention.

‘Nothing is preventing the New Jersey Health Department from doing anything with the samples.

‘This is not just a parent issue, it is about digital privacy as well. The government can reach in and take whatever it wants, and we are trying to protect individuals from that.’

Texas, Minnesota, and Michigan have also faced lawsuits over their blood storage practices, primarily because parents did not provide consent. 

The 2009 lawsuit in Texas, which was holding DNA indefinitely, resulted in the state’s 5.3 million blood samples, and now, all blood samples obtained after 2012 must be destroyed after two years.

‘Texas was sending blood samples to the Pentagon to create national data that would become international, said Morris.’ 

A 2014 settlement in the Minnesota lawsuit resulted in 1.1 million blood samples being destroyed – the state began storing DNA in 2014.

In 2022, Michigan, which began retention in 2012, was also sued to destroy three million blood spots, but that lawsuit is ongoing. 

While a warrant is typically needed to obtain genetic material, the New Jersey Office of the Public Defender law enforcement did not have permission to collect the child’s blood from the database, Morris said.

Morris told DailyMail.com that the New Jersey police department had used the state’s newborn disease screening program five times previously. 

The samples were obtained from the card of a now 11-year-old child to arrest the father, Brian Avis, for the rape of a 10-year-old girl in 1996 and a five-year-old girl in 2003, according to Law360.

Avis was sentenced to an aggregate and is serving 17 years in New Jersey State Prison.

‘By serving a subpoena upon the Newborn Screening Laboratory, the State Police sidestepped its constitutional obligation to develop probable cause and obtain a warrant so that it could obtain a buccal swab from OPD’s client to perform an analysis of his DNA,’ a separate lawsuit from the Office of the Public Defender reads. 

‘I think of it this way: we might have just two claims, but to me, it is a simple lawsuit, Morris said.

‘There is the Fourth Amendment right that [protects people from unreasonable searches and seizures by the government] and that the Supreme Court recognizes that parents have a fundamental right to protect their children and make decisions.

‘We are saying the state is infringing on that.’ 

New Jersey has a laboratory in Trenton where samples are sent for disease testing, but the warehouse in which they are stored is unknown. 

The lawsuit claims the lab processes more than 100,000 newborn tests each year.

‘Other states have had to change their laws, and New Jersey needs to do the same thing,’ said Lovaglio.

‘Our hope with the lawsuit be destroyed, consent and more transparency.’