A bill to reauthorize federal funding for newborn DNA collection passed the U.S. House of Representatives by voice vote—meaning without a vote record—on June 26.
Currently, the Newborn Screening Saves Lives Act of 2007 mandates collecting blood samples from every newborn by heel prick. Labs then screen the samples for diseases. Although many states allow for discarding the samples at that point, this bill would collect each newborn’s DNA in federal databases for subsequent medical research and, in one state, tracking its owners’ education progress.
Neither existing law nor the reauthorization bill, which extends the legislation until 2018, requires informed consent from parents. The Senate approved similar legislation in January.
“It’s not appropriate for the government to know that much about any human being, much less a young, innocent citizen whose parents don’t know it’s being collected,” said Jane Robbins, a senior fellow of the American Principles Project.
In most states, parents may request a screening exemption, but only for religious reasons. In Nebraska and West Virginia, parents may not refuse screening.
$50 Million From Feds
So far, Rhode Island appears to be the only state connecting a child’s newborn blood screening information to his state education record. But with federal support for this linkage, Robbins predicts more state participation.
In 2011, Rhode Island received a $50 million Race to the Top Early Learning grant from the U.S. departments of Education and Health and Human Services.
In its grant application, the Rhode Island Department of Education (RDOE) said it would link the state’s child health information database, KIDSNET, to the state’s K-12 database. Information included in KIDSNET includes laboratory reports from newborn bloodspots, which involves DNA testing.
“Another key asset is that Rhode Island provides universal newborn screening to all infants and enters the data into KIDSNET, a public health data system that is used by primary care providers to identify the need for follow-up on areas of concern,” the 2011 grant application reads. “This database will be linked to Rhode Island’s PK-20 database as we develop the Rhode Island Early Learning Data System using a unique child identifier so that there is the ability to track progress and child outcomes over time.”
Rhode Island DOE claims it will not use DNA information provided in newborn screening data, and it denies DNA data is even available to them.
“We will link our data with some screening data from the R.I. Department of Health; it is our understanding, however, that the Department of Health does not collect DNA samples,” said Elliott Krieger, a department spokesman, in an email. “In any event, no such data will be linked to data from this agency, nor would we use any such data.”
These claims would be more assuring if they were backed up with state privacy laws forbidding such data collection, Robbins said.
“There is no reason for them to have [DNA] information, certainly when parents are not required to consent,” she said.
Image by a4gpa. Editor’s note: Information has been added to this story to be more precise about what type of biometric information KIDSNET says it contains.