The National Institutes of Health could soon be collecting the private health data of millions of Americans to create an autism registry. It is part of Health Secretary Robert F. Kennedy Jr.’s efforts to identify the cause or causes of autism.
According to CBS News, NIH Director Dr. Jay Bhattacharya told advisers on Monday, April 21, that the agency will compile data from multiple sources to get “comprehensive” and “broad” coverage of the U.S. population for the first time.
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What information will the NIH collect?
Bhattacharya told NIH advisers the agency will collect medication records from pharmacy chains, data from patients treated by the Department of Veterans Affairs and the Indian Health Service, claims from private insurance companies and data from smartwatches and fitness trackers, CBS reported.
CBS wrote Bhattacharya also said the NIH is in talks with the Centers for Medicare and Medicaid Services to broaden access to their data.
A new disease registry to track Americans with autism is set to be launched as well, Bhattacharya said. That will also be integrated into the data.
Will Americans’ data be safe?
The Department of Health and Human Services, which oversees the NIH, said between 10 and 20 outside groups of researchers will be given grant funding and access to the records to produce Kennedy’s autism studies.
Bhattacharya did not give details on how the researchers would be chosen, but said their selection would be “run through normal NIH processes.”
He added that while they will be able to access and study the private medical data, they will not be able to download it.
Bhattacharya reportedly promised advisers “state of the art protections” for people’s information. However, he did not say what those protections would entail.
When will we get the results?
Bhattacharya said the NIH is on a “rapid timeline” to launch the autism research using this data but did not give specifics on when the studies would start or how long they’ll take. He also did not specify exactly how the data will be used.
During a recent cabinet meeting, Kennedy told President Donald Trump his agency will know the root cause of autism by September. However, the NIH director walked that back while talking to reporters on Tuesday, April 22. It could take until next year to get preliminary results from the studies, Bhattacharya said.
