News 4 Investigates: Why the state may keep your baby’s blood

ST. LOUIS, Mo. (KMOV) - Babies are born every day, and every single day, they get life-saving tests before they ever leave the hospital. But what happens with the blood samples afterward has been raising some big questions.

“It’s very important we do that screen because it checks for rare but serious conditions that can be missed otherwise,” said Dr. Shakila Matthew, a Pediatric hospitalist with Washington University Physicians.

Starting first in the 1960′s, now every state performs the newborn screening, although a national investigation by KMOV and Gray TV, found what’s tested for varies by state. Illinois screens for 57 conditions, for example. Missouri tests for 77 different conditions and Georgia, just 35.

Dr. Matthew explained the screens can save lives by detecting very serious conditions like cystic fibrosis or sickle cell anemia.

“Prevention is very important in pediatrics,” she said.

But an attorney is currently suing over Michigan’s newborn screening storage policies, calling them unconstitutional.

“What the state needs to realize is that moms and dad get to make the choice, not a government bureaucrat,” said Philip Ellison, who has both a federal and state lawsuit in Michigan on the issue.

In New Jersey, there has also been a recent uproar from attorneys after learning some newborn baby blood was used by law enforcement, in one case reportedly connecting the baby’s father to a crime.

“The problem is always the unforeseen consequences,” said data expert and Webster University professor Scott Granneman.

He told News 4 what happens with the blood tests could pose real problems.

“DNA is increasingly everywhere and it’s going to be used in ways we didn’t intend and in ways we don’t know,” said Granneman.

So News 4 Investigates wanted to know: What do our states do with babies’ blood?

Both Missouri and Illinois prohibit law enforcement access. While Illinois’ law doesn’t allow for third-party research, Missouri’s does. They store all the samples for up to five years, in unassuming-looking freezers.

If you don’t want your baby’s leftover samples to be sold for study by a third party, you must opt out by writing a letter to the state.

According to a public records request, of the 440,000 babies born in Missouri since 2018, the state has only received about 200 such letters in the same time period.

News 4 Investigates wanted to talk to the state health department, but they declined an interview. In a statement, a spokesperson highlighted: “no such official research request has been received or approved,” in the last five years.

That doesn’t mean they won’t have in the future and if you haven’t opted out, your baby’s blood could be sold, without your further consent.

Back at Barnes Jewish Hospital, Dr. Matthew said most parents have few questions about the blood samples.

“Usually there are parents that could decline it, but mostly parents know it’s for the benefit of the baby,” she said.

The State of Missouri said there are many reasons why screening samples are kept, such as for a baby’s healthcare team or to help identify a missing or deceased child.

They also state that if the samples are used for research, all identifying information is removed from the samples and the researcher does not know who the baby is.

Still, those raising concerns about storage of the sample, stress that parents should know all about what might happen with the samples.

You can find more information at the links below:

CDC Newborn Screening Portal

Newborn Screening Tests For Your Baby

Newborn Screening 101

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