RFK Jr’s autism study collecting Americans’ private medical records

The National Institutes of Health (NIH) is collecting the private medical records of many Americans from several different federal and commercial databases to give to researchers for US health secretary Robert F Kennedy Jr’s new autism study.

With this information being included in the database, the NIH is also reportedly crafting a new registry to track those with autism, per CBS News.

The health agency claims it was doing so to fulfill a controversial promise the secretary of health made to root out the cause of autism by September, despite some experts saying that Kennedy’s goal is not even feasible.

“If you just ask me, as a scientist, is it possible to get the answer that quickly? I don’t see any possible way,” Dr Peter Marks said on CBS’s Face the Nation earlier this month.

On the collection of data, the director of NIH, Jay Bhattacharya, told advisers during a presentation on Monday that the aim was to help researchers study autism by giving them access to “comprehensive” patient data and health records.

He added that these records would cover a “broad range” of people across the US.

“The idea of the platform is that the existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource,” he said in the presentation. “Even data resources that are within the federal government are difficult to obtain.”

Bhattacharya added that the NIH was also discussing a potential expansion of the agency’s access to data from the Centers for Medicare and Medicaid Services.

The study also plans to link medication records from pharmacies, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers.

Between 10 and 20 outside research teams will be selected and given grants to study the data, according to CBS News.

Bhattacharya said that compiling this data could also potentially give health agencies a window into “real-time health monitoring” on Americans for studying other health problems beyond autism.

“What we’re proposing is a transformative real-world data initiative, which aims to provide a robust and secure computational data platform for chronic disease and autism research,” he said.

Bhattacharya echoed Kennedy’s words that some answers as to the cause of autism would be discovered by September, but he added that the study would be “an evolving process”.

The news followed Kennedy’s first press conference in which he claimed that a significant and recent rise in autism diagnoses was evidence of an “epidemic” caused by an “environmental toxin” despite the evidence collected by health researchers.

The Guardian has contacted the NIH for comment.