RFK Jr. autism data project stokes alarm over motives

Health Secretary Robert F. Kennedy Jr.'s push to collect troves of personal medical data to find the cause of autism has researchers and patient advocates questioning whether his plan to cast a wide net makes it easier to pick and choose information that supports certain theories — including the debunked idea that vaccines cause autism.The big picture: The National Institutes of Health has long pushed to include more data collected during health care delivery in its research. Kennedy would put a new twist on that, by combining federal health data, medical records, insurance claims and readouts from wearables into what Health and Human Services calls a "real-world data platform."The accelerated effort could cut red tape and lead to more effective treatments. Or it could turn scientific research into elaborate cherry-picking, akin to "Just give us everything, and we'll find what we need." Gathering huge amounts of data will make it easier to generate "phony evidence for RFK's predetermined conclusion" that vaccines cause autism, the Autism Self Advocacy Network said in a statement about the research initiative.Some health providers are reporting an uptick in requests to remove personal information from patient charts over concerns about privacy and the way the information could be used to support debunked claims. State of play: Kennedy has vowed to find the cause of autism by September, with the help of $50 million the NIH is investing to link datasets. NIH director Jay Bhattacharya last week said that will involve collecting medication records from pharmacy chains, claims from private insurers, lab tests from Veterans Affairs and Indian Health Services patients and smartwatch data.But after that triggered an outcry in the autism community, HHS on Friday took pains to discount suggestions it was creating a "registry" of people with autism, saying the result would be a data platform secured by the department and subject to security and patient privacy standards. Bhattacharya said during a public presentation to NIH advisers last week that the data collection initiative could be used to help develop national disease registries, including one for autism. It's not clear whether people will be able to opt out of having their records included. What they're saying: Kennedy's expedited timeline for the effort, and his resistance to the body of evidence disproving a link between vaccines and autism, suggest that he's looking to use the data to arrive at a specific conclusion, said Paul Offit, director of the Vaccine Education Center at the Children's Hospital of Philadelphia."I think RFK Jr. has what no scientist should ever have, which is a non-falsifiable hypothesis," Offit said. HHS did not respond to a request for comment on these concerns.There is already ample evidence that factors like genetics and older parental ages at time of conception increase the likelihood of developing autism. The other side: Data is necessary for health care research, and there's always more research that can be done.Kennedy and Bhattacharya have said they want to make replication of medical studies a centerpiece of what NIH does, pointing to fraud in the research community. The question is at what point could repeating accepted studies undermine science for political gain."I was really happy to see renewed focus on the power of data and what data can do to transform the health care space," said Mitesh Rao, CEO of health data sharing company OMNY.The autism data collection effort could yield valuable insights for the federal government if it's done right, he said. A public-private partnership could help ensure everything runs smoothly, with private companies' expertise in privacy law and platforms that aid collaboration at scale, he said. Yes, but: Many people with autism and other disabilities are rapidly losing trust in federal health officials, which could have a ripple effect through the autism research effort and beyond. Eli Brottman, policy director for a Chicago-based good government organization who has autism, told Axios he asked his therapist not to use diagnostic codes for autism in insurance claims after hearing about the NIH research initiative. "They've already reached all sorts of false conclusions," he said. "What makes me believe that the research is going to do anything other than attempt to support those conclusions?""The concern isn't necessarily that the government has access to a diagnosis," said AJ Link, an autistic person and director of policy for New Disabled South. "It's that the government may weaponize it."Go deeper: People with autism seek dignity where RFK seeks a cure

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