A new bill in California could eliminate a little-known rule that allows the state to store newborn blood indefinitely

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

A new bill recently passed in the Senate would give parents the choice to opt out of the retention and confidential use of their newborn’s screening specimen, which is collected with a heel piece. injection at birth to detect hereditary diseases.

The bill was moved to the Suspense File on Monday, where it will be held for consideration until the budget is passed. No date has been specified.

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

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

The costs would be needed to rework the current process, including paperwork allowing 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 about $120,000 to implement — far less than what CDPH claims.

DailyMail.com has contacted CDPH for comment.

The bill, which passed the Senate in January, could be lost in the appropriations bill because of costs cited by CDPH.

If the bill passes, it will go to the General Assembly, which will then have to determine whether or not it should go to Governor Gavin Newson.

Senator Janet Nguyen, author of 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 are strengthening parents’ ability to exercise privacy to protect their child. ‘

Genetic testing of newborns began in the 1960s in hopes of detecting diseases and conditions that could kill a child or cause serious problems.

Nurses fill six spots on a special filter card when performing the screening, which is then sent to a laboratory for testing, but the remaining samples are kept for the specific time allowed.

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

Although there is little data on the number of samples stored, one report states that there were 13.5 billion newborn blood spots stored nationwide in 2009.

And reports show that most states have been stockpiling DNA since 2001.

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

The state had only filled five spots on the map, but increased to six in the 2010s, which reports claim sell for $20 to $40 per spot.

In December 2020, it was revealed that researchers in California had accessed 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 poll A US poll found that three-quarters of new parents had no idea that California was storing their baby’s leftover bloodstains indefinitely or that they had the right to have their child’s blood sample destroyed.

Another problem with blood storage is that it contains sensitive information about the individual.

“Allowing the government to access samples containing such sensitive information for reasons other than public health would seriously threaten our privacy – especially considering that our DNA reveals such information not only about us, but also about our family members,” the American Civil Liberties said Union. a statement.

CDPH could push back on the mandate, arguing that it would cost “between $3.8 million and $4 million (including one-time costs) in the first year and $1.6 million in ongoing costs thereafter to implement the bill’s provisions (genetic disease testing). Fund).’

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

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

Hannah Lovaglio, a Cranbury resident and plaintiff, told DailyMail.com in November: “This is a real elder law issue. This is their body; This is their property that has been taken from them since five years of being minors, and the state does not have to provide any justification.

“It’s very concerning that they’re taking advantage of a new parent’s helplessness,” Lovaglio said.

“At your most vulnerable moment, someone takes something from your child, and you have no idea.”

The Centers for Disease Control and Prevention in Atlanta, Georgia, in 2002 proposed a database of newborns’ DNA-filled bloodstains and used them — apparently without parental consent — for additional purposes beyond the infant genetic screening program, according to the Citizens’ Council on Healthcare.

Some states, such as South Carolina and South Dakota, destroy the bloodstains after a year or once testing is completed.

Other states that store DNA from newborns for years have rules that limit what can be done with the samples, and some, such as Alabama and Arizona, let parents refuse to retain blood.

About 29 states provide parents with screening refusal forms, including Alabama, New York and Nevada.

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

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

A 2014 settlement in the Minnesota lawsuit resulted in the destruction of 1.1 million blood samples; the state began storing DNA in 2014.

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