Robert F. Kennedy Jr. is facing criticism for his proposal to collect private health data and create a national registry to monitor Americans diagnosed with autism. The initiative, which aims to advance autism research, involves gathering confidential medical information from both federal and commercial sources, including pharmacy records, laboratory results, genomics data, insurance claims, and information from wearable devices.
Kennedy, who currently serves as Secretary of Health and Human Services, has described autism as a preventable condition and referred to the rise in diagnoses as an “epidemic.” At a recent White House Cabinet meeting, he announced a large-scale research project involving hundreds of scientists worldwide, expressing confidence that by September, the causes of the so-called autism epidemic would be identified and eliminated.
As part of this effort, the National Institutes of Health (NIH) will provide researchers with access to a comprehensive database that consolidates fragmented health records from across the country. The NIH Director, Dr. Jay Bhattacharya, explained that this unified platform is intended to overcome the current challenges of accessing scattered data, noting that even government agencies often struggle to share information efficiently. The NIH is also negotiating with the Centers for Medicare and Medicaid Services to expand access to their datasets.
Research teams, selected through standard NIH procedures, will be permitted to analyze the data but will not be allowed to download it, with officials promising stringent confidentiality protections. In addition to the data study, a new registry will be established to track individuals with autism nationwide.
The plan has sparked significant backlash from autism advocates and members of the public, many of whom are concerned about privacy and the potential misuse of sensitive health information. Critics argue that such a registry could violate confidentiality and stigmatize those with autism. Some have voiced their objections on social media, with parents and advocacy groups expressing fear and disapproval over the collection of private records and questioning the benefits of the research for those living with autism.
Organizations like the Autistic Self Advocacy Network have condemned Kennedy’s approach, arguing that it frames autistic people as a problem to be solved and ignores the reality that increased diagnoses are largely due to better awareness and broader diagnostic criteria, rather than an actual surge in case.
Overall, while the initiative is positioned as a major step toward understanding and potentially preventing autism, it has ignited a heated debate about privacy, consent, and the framing of autism in public discourse.