PROVIDENCE, R.I. – 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. While 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 DNA to his state education record, Robbins said. But in return for federal funds, a number of states plan to link children’s health data with their student records, she noted.
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 their grant application, the Rhode Island Department of Education said it would link the state’s newborn DNA database, KIDSNET, to the state’s K-12 database.
“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.”
Despite its contract with the federal government, RDOE says it will not use newborn screening data.
“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.”
Robbins said promises would be more assuring if they were backed up with state privacy laws positively forbidding such data collection.
“There is no reason for them to have [DNA] information, certainly when parents are not required to consent,” she said.
Authored by Vivian Hughbanks