Health Secretary Robert F. Kennedy Jr. is launching a disease registry to track Americans with autism.
Why it matters: Advocacy groups and experts have called Kennedy’s characterization of autism as a “preventable disease” unfounded and stigmatizing.
The other side: “A lot of autistic people find that the idea of a cure, of making them not autistic anymore, is the same thing as proposing to make them a different person,” Zoe Gross, director of advocacy at ASAN, told Axios’ April Rubin this month.
The big picture: The National Institutes of Health is collecting private medical records from both federal and commercial databases for the purpose of studying autism NIH Director Dr. Jay Bhattacharya said on Monday.
- “The idea of the platform is that the existing data resources are often fragmented and difficult to obtain,” Bhattacharya said in a presentation to the agency’s advisers, CBS News reported.
- “The NIH itself will often pay multiple times for the same data resource. Even data resources that are within the federal government are difficult to obtain.”
- The registry will be used as a part of the data.
What they’re saying: Advocates expressed privacy concerns about the plan.
- The nonprofit Autism Self Advocacy Network (ASAN) commented on the vagueness of the plan: namely, whether culled data will contain “personally identifying information” or whether people will have the opportunity to opt out from the collection of personal data.
- The Department of Health and Human Services did not immediately respond to Axios’ request for clarification on the use of personal data and the possibility of opting out of collection.
Bob Merold, managing partner at health care strategic planning firm Execullence, told Axios that the data collection was likely redundant and a potential waste of funding dollars.
- “Similar and often better information assets already exist in the private sector from multiple vendors,” he explained. “The data [NIH] are creating won’t get at many of the most critical subjects that should be addressed — most important the genetic components.”
- “In an administration focused on cutting waste it seems unwise to rebuild the wheel,” he adds.
Bhattacharya said the research will produce “the highest quality proposals” that include “basic science to epidemiological approaches, to other more applied approaches” to treat 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.
Context: One in 31 U.S. children age 8 or younger are now diagnosed with autism, according to a Centers for Disease Control and Prevention study released Tuesday, an increase attributed to improved screening and earlier detection.
Zoom in: Kennedy, however, has rejected research finding no link between autism and vaccines, and has pledged a “massive testing and research effort” to find autism’s cause by September.
