Health Secretary Robert F. Kennedy Jr.’s ambitious plan to collect vast amounts of personal medical data to study autism has raised concerns among researchers and patient advocates about the potential for cherry-picking information that supports his theory that vaccines cause autism.
The initiative, which aims to combine federal health data, medical records, insurance claims, and wearable device data into a “real-world data platform,” could help streamline research and lead to more effective treatments. However, critics argue that it may also create an environment where unsubstantiated claims can be supported by selectively chosen information.
Some healthcare providers are reporting an increase in requests to remove personal information from patient charts due to concerns about privacy and potential misuse of the data. The Autism Self Advocacy Network has warned that gathering large amounts of data could lead to “phony evidence” supporting Kennedy’s predetermined conclusions, which have been debunked by scientific research.
Kennedy’s push for a cure is at odds with the views of many people with autism who prefer to focus on acceptance and inclusivity rather than a medical fix. The initiative has also raised concerns about trust in federal health officials, particularly among those with disabilities, who fear that their data may be misused or weaponized.
As the NIH invests $50 million in the effort to link datasets, experts caution that replication of established studies is essential to ensure scientific integrity. While some see potential benefits from the initiative, others worry that it could undermine trust in science and perpetuate misinformation about vaccines and autism.
Source: https://www.axios.com/2025/04/28/rfk-autism-data-nih-alarm