The word is out. Robert Kennedy, Jr. and the NIH are going to create a database of the health records of autistic individuals in order to work to uncover the causes of autism. Where is this health information coming from? Medicare and Medicaid records as well as private insurers, the VA, and the Indian Health Service. This is obviously a huge privacy concern, and one that I take seriously.
The creation of this autism registry goes against every ethical principal I have, and flies in the face of good scientific practice. Medical information pooled this way, even if deidentified, is not okay. We will not find the cause of autism by September, and certainly not a cure. The claims are outlandish and speculating on the quackery that will come after this in the form of treatment or prevention leaves my mind spinning. This is the wrong direction to take autism research in.
It is ironic to me that certain politicians felt vaccine mandates were a violation of HIPAA, but don’t sneeze at the idea of accessing people’s private health information in this way.
Why is the NIH backing this? Data. Collecting medical information about people is a real challenge and the NIH I’m sure is foaming at the mouth for usable data. This is a fight worth fighting, not just because it targets autistic people. This is a slippery slope that potentially puts all private healthcare information into the hands of the government. What’s next?
How can you protect yourself right now?
- Do not use your health insurance for anything autism-related.
- Do not give your healthcare provider information about your diagnosis or assessment at this time.
- Take off your Apple watch.
I do not allow access to anyone’s records without their written consent. Period.
Contact your representative and let them know how you feel about the registry: