A new bill in California is trying to tighten the reins on how the state collects newborn blood. Privacy advocates worry about government control of millions of citizens’ DNA, but scientists say the bill will put babies in danger.
J. Scott Applewhite / AP / Via apimages.com
On the day they're born, nearly all American babies have their heels pricked with a needle. A few spots of blood drip onto a card with the infant's name, and that card is rushed off to a lab to test for about 40 genetic diseases.
Amidst the chaos and elation of the birth, the baby's mother receives dozens of pamphlets, including one about this testing, and possibly a form to sign. At that point, in many states, the baby's blood becomes government property. States put it in long-term storage and, often, provide anonymized samples to medical researchers for their studies.
The new parents, meanwhile, usually have no idea that any of this is happening. But that's about to change.
This week, a federal act goes into effect requiring that all federally funded researchers using newborn blood spots first get parental consent. Meanwhile, today California lawmakers opened debate on a bill that would extend this to any research — whether federally or privately funded — using the samples, and could change how parents are informed about the program in the first place.
"I talked to like 50 parents," Mike Gatto, the California assemblyman introducing the Newborn Blood Sample Privacy bill, told BuzzFeed News. None of them, he said, knew that California had banked their baby's DNA and handed it over to scientific research. "I don't mean to sound alarmist," he added, "but this really does become a situation with a state-created DNA bank, with profound room for abuse."
On the other side of this debate are scientists who argue that such legislation stirs up unfounded fears around newborn screening, which could ultimately put tens of thousands of infants at risk.
"Along with immunizations, it's one of the most successful public health programs in our country's history," Erin Rothwell, associate professor of medical ethics at the University of Utah, told BuzzFeed News.
Screening programs for rare but treatable genetic diseases in infants began in the 1960s, and the program now identifies nearly 3,400 infants with these diseases every year. For example, the first genetic condition to be screened in newborns, phenylketonuria or PKU, can cause mental retardation if left untreated. But when diagnosed early, there's a relatively simple fix: the child can be put on a special diet that promotes healthy brain development.
The controversy lies not in this initial testing, but what comes after. In many states, parents are not explicitly told what happens to the blood samples. Consent forms are often long and difficult to understand, and that's if they get read at all. "People don't understand what they're signing, they won't take the time to read it. You have other pressing needs," Rothwell said.
Approximately 20 states store and distribute the samples, operating under a messy hodgepodge of rules and regulations. The laws give parents varying levels of control over how the blood spots are used and whether they will be told about it.
In 2009, five families led a lawsuit against the state of Texas for storing the blood spots and using the samples for research without parental consent. An investigation by the Texas Tribune revealed that the state health department had shipped 800 blood spot cards to the U.S. military to help build out a vast DNA database for use in criminal investigations. After losing the suit, Texas was forced to set fire to nearly 5.3 million blood spot cards.
In 2012, after a similar lawsuit, the state of Minnesota destroyed all of its samples as well.
J. Scott Applewhite / AP / Via apimages.com
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