Privacy experts are sounding the alarm after the federal government announced a plan earlier this week to create a health database of the U.S. population.
National Institutes of Health Director Jay Bhattacharya said the information will be used for autism research and a national disease registry.
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WATCH HEREThe announcement came after Health and Human Services Secretary Robert F. Kennedy Jr. promised to find the cause of autism by September.
In a presentation to the NIH’s Council of Councils — which advises the NIH director on matters related to the agency’s Division of Program Coordination, Planning, and Strategic Initiatives — Bhattacharya outlined the data platform’s main goal of covering most of the country’s population.
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SIGN UP The presentation slide outlined the government’s sources for obtaining the data including health organizations, pharmacy chains and wearable sensors like smartwatches.
“I think my first response was a resounding, 'why?'” Tory Ridgeway, a college student from Prince George’s County with autism, said. “Just why?”
Ridgeway said the practice sounds like an invasion of privacy, especially if people didn’t consent to the release of their private information.
Health
“I question why they would need to go behind my back to Walgreens to ask them what kind of meds I'm taking and in what dosages,” Ridgeway said.
Emerald Tse, an associate in the Center on Privacy & Technology at Georgetown Law, said people should have the right to know how their data will be used.
“We know that health information is incredibly sensitive,” Tse said. “When people go to their healthcare provider, they're giving up that information because they have to in order to receive a service.”
The presentation slide also outlined the opportunities that could come with the database including real-time health monitoring and national disease registries.
“I just find it to be very alarming that they're trying to do this, not only for me, but for people with other conditions or people who don't even have autism at all in the first place,” Ridgeway said. “Why do you need their information?”
The presentation said the NIH plans to “protect patient confidentiality,” but the agency did not return a comment to News4 on the specifics.
Privacy laws allow healthcare providers to disclose “limited datasets” for research and public health purposes, but they’re required to ensure patients’ confidentiality when transferring the information.
