Data Collection and Privacy Concerns
The , under Director Dr. Jay Bhattacharya, announced plans to collect a wide range of private health data for an autism study, including records from pharmacies, insurers, and wearable devices, aiming to integrate this into a new data platform for research.
Privacy advocates and autism researchers expressed significant concerns over the potential misuse of personal health information and the adequacy of protections against privacy breaches, leading to a backlash and requests for data scrubbing by some healthcare providers.
Revisions and Clarifications
Following public outcry, the HHS retracted initial plans for an autism registry, clarifying that the effort focuses on linking existing datasets to enhance autism research without creating a new registry.
NIH Director Dr. Jay Bhattacharya previously hinted at developing national disease registries, including one for autism, but this was later contradicted by the HHS, which emphasized the project's focus on real-world data platforms and collaboration with federal agencies.