1. United States
2. Mich.
3. Letter

I am writing to you in outrage and deep concern over recent revelations that Robert F. Kennedy Jr. is building a national registry of individuals with autism using private and highly sensitive medical records obtained from both government and private sources. According to NIH Director Dr. Jay Bhattacharya, this registry will pull data including pharmacy prescriptions, lab results, genetic information from the VA and Indian Health Service, insurance claims, and even fitness and smartwatch data. This constitutes a grotesque violation of medical privacy and bodily autonomy. Worse, it is being carried out under the guise of public health, but without consent, transparency, or accountability. This is a chilling overreach reminiscent of the darkest chapters in our nation’s and the world’s history. We have seen what happens when governments create medical databases targeting specific populations. From the eugenics movement of the early 20th century to forced sterilizations and racial health discrimination, the path from data collection to human rights abuses is horrifyingly short. We cannot and must not allow history to repeat itself. That this effort is moving forward under the watch of a Republican administration that has already demonstrated a troubling willingness to sidestep legal norms and constitutional protections makes this even more alarming. We are witnessing a normalization of authoritarian tactics under the banner of “health data,” and it is unacceptable. No American should have their private medical records harvested and stored without their knowledge or consent. No administration, Republican or otherwise, should be allowed to weaponize medical data under the guise of research or registry-building. I am demanding immediate action: 1. A full congressional investigation into this registry, its funders, and its intended uses. 2. Legislation that explicitly prohibits the creation of medical registries without informed consent from every individual whose data is included. 3. Oversight and public accountability for the Department of Health and Human Services, NIH, and any agency participating in this. We are standing on the edge of a slippery, dangerous slope. Congress must act swiftly to shut this down, protect Americans’ rights, and prevent any future abuse of medical data in this country.