The director of NIH, Jay Bhattacharya (right), accompanied by the secretary of the HHS, Robert F. Kennedy Jr. (on the left), the FDA commissioner, Marty Makary (Center), speaks during a press conference Tuesday in the Department of Health and Social Services in Washington, DC
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The National Institutes of Health will begin to collect the private health files of the Americans as part of the controversial plan of the Secretary of Health and Social Services Robert F. Kennedy Jr. to discover a cause and a remedy for autism. The director of NIH, Jay Bhattacharya, informed this week a panel of experts in terms of.
The NIH plans to collect information from a wide range of private sources, including pharmacy chains, hospitals and portable devices with health sensors, such as smart watches.
“The idea of the platform is that existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay several times for the same data resource,” said Bhattacharya The guardian. “Even the data resources in the federal government are difficult to obtain.”
The NIH did not return a comment request.
Kennedy has done research on autism a central pillar of his role as an official health defender of America. He has made a number of conspiratorial and anti-science complaints, in particular that infantile vaccinations could cause autism, despite overwhelming evidence.
Earlier this month, he described the autism as “epidemic” and promised to find an “environmental toxin” responsible for the disorder by September.
“Global autism increases in the prevalence at an alarming rate,” Kennedy told journalists at the time. “We will come back to it with an answer to the American people very, very quickly.”
He also described autism as “a avoidable disease”.
Although the Centers for Disease Control and Prevention reported that the prevalence of autism in the United States has gone from 1 in 36 children five years ago, to 1 out of 31 children in 2022, experts say that this is largely due to more complete screening in a wider population.
As for the identification of a deep cause of the disorder, some experts have also warned that there is probably no single factor to determine a diagnosis of autism.
“We can have hundreds, even thousands of different neurogenetic factors which, in combination with complex environmental interactions, influence the presentations of autism,” said Zachary Warren, a pediatric psychiatrist and autistic researcher at the University of Vanderbilt, at NPR at the time of Kennedy’s remarks.
Bhattacharya, the director of the NIH, also has controversial training in the medical community, very early questioning the lethality of COVID-19 and being a vocal opponent of locking mandates.
This week, he would have fallen from the deadline of September, telling journalists that a year is more likely.
“I would like to have a calendar within a year, where they are starting to extinguish the preliminary results or the results. We will see. It is difficult to predict how long the scientists – you know, nature has its say on the duration of the results,” said Bhattacharya, according to CBS.
The NIH plan attracts confidentiality problems
Already, the news of the study of autism has sparked an upheaval of defenders of disability and privacy.
The deputy for New York State Angelo Santabarbara, a democrat, wrote in a statement published in X that this decision was disrespectful to those who autistic.
“This idea is dangerous, contrary to ethics and a serious threat to privacy. Autistic people deserve dignity and respect-not surveillance of their own government,” he wrote. “I am with defenders across the country to strongly oppose this proposal.”
Sara Geoghegan, the main lawyer of the Electronic Privacy Information Center, said that the decision to collect private medical data in this way was a shocking difference in the standard and wondered how the NIH planned to protect the information it won.
“I’m almost breathtaking here,” said Geoghegan.
“I think that there can be authorized uses of data for medical research when they are properly worn and when they have solid and robust guarantees in place to protect personal confidentiality and personal information. I am very concerned about this type of database which collects information from commercial sources,” she said.
“The collection and processing of personal information, in particular health -related information that can reveal health conditions in this way, is out of context and inappropriate,” added Geoghegan.
Andrew Crawford, principal lawyer for the Center for Democracy and Technology’s Confidential and Data Project, expressed similar concerns.
“It seems just like another example of how the administration really violates longtime confidentiality standards,” said Crawford.
“We have seen, for example with DOGE, this seems to be another example and another case where elements of the federal government will access and link some of the personal information most sensitive to government purposes which are not very clearly defined or somehow unknown,” he continued, referring to the effectiveness of the Ministry of Elon Musk of Elon Musk.
There, staff members have obtained unprecedented access to sensitive personal data from Americans, including social security databases.
