Target: Robert Kennedy, U.S. Secretary of Health and Human Services
Goal: Do not create autism registries or engage in any other information-sharing of confidential medical data.
Secretary of Health Robert Kennedy began Autism Awareness Month by announcing that within six months, his agency would have the answers on the causes of autism. He promoted studies that would “explore” what the science community has already researched (and answered) for years: a potential link between vaccines and autism. Secretary Kennedy continued raising awareness by insulting individuals on the autism spectrum and their families with the following remarks: “Autism destroys families….And these are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a toilet unassisted.” Autism Awareness Month will conclude with word that the National Institutes of Health (NIH) may be creating an autism registry compiled from individuals’ private medical information.
The notion of a tracking registry hits close to home for the neurodivergent community. Similar efforts were used in Nazi Germany during World War II to imprison and murder autistic people. And in the United States, such registries were routinely used during forced sterilization campaigns. The registry’s announcement has already stoked fear among parents, many of whom have contacted healthcare providers to have their children’s medical information scrubbed. Although the Department of Health and Human Services denied considering a registry after fierce backlash, just a few days prior the NIH head explicitly talked of “developing national disease registries, including a new one for autism.”
With word that the Department of Health – along with several other federal agencies – is compiling a “master database” of information on Americans for the Department of Government Efficiency (DOGE), concerns about privacy cannot be dismissed or ignored. Sign the petition below to demand America’s healthcare system leaders protect all patients’ information and privacy.
PETITION LETTER:
Dear Secretary Kennedy,
The Department of Health’s denial that it is developing an autism registry runs counter to public statements made by the National Institutes of Health. Registries for autism or any other medical condition are only possible through the compilation and sharing of private medical information: a bar too far for many Americans, including concerned families of children with autism. The lack of transparency about this concern is troubling at best, as are reports that this department will work hand-in-hand with DOGE to share patient data and to surveil Americans.
Disease registries have a dark history in America and across the world, which is why only a handful of states currently have such databases. Do not undermine Americans’ faith in their healthcare system by violating their privacy and betraying their trust.
Sincerely,
[Your Name Here]
Photo Credit: Tara Winstead
