1. United States
2. Mass.
3. Letter

I am writing to express deep concern over the announced collaboration between the National Institutes of Health, the Centers for Medicare & Medicaid Services, and the Medicare/Medicaid systems to create a “real-world data platform” aimed at studying the causes of autism—using insurance claims, electronic health records, and even data from health-tracking devices like smartwatches. This is being championed by Robert F. Kennedy Jr., a known promoter of harmful misinformation about vaccines and autism. Now, under the banner of “research,” we are watching a mass data collection effort that autistic people themselves have not consented to. And let’s be clear: this isn’t just data. It’s private health information. It’s the story of people’s lives, bodies, and identities. Have we forgotten that medical privacy is a right? That consent matters? That autistic people are not problems to be solved or tracked like anomalies in a lab? Collecting data without permission, compiling it into a centralized database, and using it to “uncover the cause” of autism feels eerily reminiscent of the earliest days of systemic dehumanization. It’s impossible to ignore the echoes of history—how minority groups were studied, catalogued, and surveilled in ways that ultimately laid the groundwork for atrocity. We don’t need databases. We need support, accommodation, and respect. I urge you to look into this project and publicly demand oversight, accountability, and informed consent. If this kind of data mining can happen under the guise of public health, then no one’s privacy is safe. This is not just a research initiative. This is a line being crossed.