SALT LAKE CITY — Some in Utah are concerned about privacy after Jay Bhattacharya, the Director of the National Institutes of Health, proposed the creation of an electronic database to research chronic diseases, starting with autism.
The database would gather data from both public and private sources. While Bhattacharya claims the database would protect patient confidentiality, others are not so sure.
“We have had autistic people come to us expressing fear,” said Larkin Taylor Parker with the Autistic Self-Advocacy Network.
Fear of the unknown is what many are now experiencing in Utah.
“They want to weaken our community, and this will weaken us to the core," Beth Blankenship said, "because these people that have autism and other disabilities already struggle in their life on a norm.”
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The proposed National Institutes of Health database would obtain medication records from pharmacy chains, lab testing, and data from smartwatches. However, Parker says that how the NIH will actually get the data remains unknown.
“[Bhattacharya] has declined to fill in what this will look like, how he will secure access to this data. All we know right now is that he wants our personal data without his consent,” said Parker.
Bhattacharya claims the data collection will not violate privacy laws.
“There are state-of-the-art protections to make sure that although linkages across the data sets will be permitted inside the platform, that these linkages do not in any way threaten or the confidentiality of patients," he said.
Many disagree.
Blankenship's family friend, whom she has known his whole life, has autism, and she worries over privacy concerns for him and his family.
“That's why we have all these papers we sign when we go into the doctor's office that says, 'No, you can't go through our information,” Blankenship said.
Parker echoed Blankenship, adding that the biggest concern is whether families will even know if their information is being obtained.
“The concern is that people may not be approved for their data, but the data may be collected from public and private insurance systems from healthcare providers,” she explained.
Blankenship believes everyone needs to care about the issue.
“This is a fight," she said. "This is like, I almost feel like we all have to stand up for this. You know, society has come together … we have to become one, because this, it seems like a fight for our privacies.”
