New bill in California could axe little-known rule that allows state to keep newborn blood indefinitely

A little-known California law that allows the state to store baby blood indefinitely and sell to third parties could come to an end.

A new bill, recently passed in the state Senate, would give parents the choice to opt out of the retention and confidential use of their newborn’s screening specimen, which is taken by a heel prick at birth to screen hereditary diseases.

The bill was moved to Suspense File on Monday, where it will be held for consideration until the budget is passed. A date has not been provided. 

The California Department of Public Health (CDPH) has been storing the samples in biobanks since the 1980s, accumulating more than 20 million blood cards, and is not required to inform parents about who is accessing their child's DNA. 

California ’s ‘controversial’ handling of newborn blood that lets the state store samples indefinitely and sell to third parties could soon come to an end

However, CDPH has pushed back on the new bill claiming it would cost up to $4 million to implement and another $1 million a year moving forward. 

The costs would be needed to rework the current process, which would include paperwork for parents to opt out and information brochures detailing how blood samples are stored and used. 

But CBS News reported that a similar bill passed in 2015 cost around $120,000 to implement - far less than what CDPH has claimed.

DailyMail.com has contacted CDPH for comment. 

The bill, passed by the Senate in January, could die in appropriations due to the costs cited by CDPH.

If it is passed, the bill will move to the Assembly that then needs to determine if it should or should not go to Governor Gavin Newson. 

Senator Janet Nguyen, who authored the bill, said: 'By giving parents the right to prohibit the use and retention of their baby’s blood sample for research purposes and indefinite storage by the state, we bolster the ability for parents to protect their child’s privacy.'

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.

The California Department of Public Health (CDPH) began storing samples indefinitely in state-run biobanks in 1983.

The state had only filled five spots on the card but increased to six in the 2010s, which reports have claimed are sold for $20 to $40 per spot.

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.

While the state automatically sends the blood to a facility, parents are given a pamphlet telling them where they can request the samples be destroyed.

A CBS News-Survey USA news poll found three-quarters of new parents had no idea California was storing their baby's leftover bloodspots indefinitely or that they had the right to have their child's sample destroyed.

Another issue with blood storage is that it holds the individual's sensitive information.

'Allowing the government to access samples with such sensitive information for reasons other than public health would seriously threaten our privacy — particularly given that our DNA reveals such information not only about us, but also our family members,' the American Civil Liberties Union shared in a statement. 

READ MORE: Baby blood used to convict pedophile of 1996 rape sparks ethical debate 

In 2021, Brian Avis, 61, was convicted of sexually molesting a 10-year-old girl in 1996 after New Jersey police analyzed the DNA of Avis' child, who was born in 2012. 

CDPH may be pushing back on the mandate, citing that it ‘would cost between $3.8 million to $4 million (including one-time costs) in the first year and $1.6 million in ongoing costs thereafter to administer the provisions of the bill (Genetic Disease Testing Fund).’

However, the appropriations analysis states that the costs would be covered by the Genetic Disease Testing Fund (GDTF), not the general fund.

The storage and use of newborn blood took center stage last year after parents in New Jersey sued the state after finding police collected a baby's DNA without a warrant to investigate the child's father.

Hannah Lovaglio, a resident of Cranbury and plaintiff, told DailyMail.com in November: '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. 

'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.'

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.

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.

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.