A new federal initiative to build a national autism data platform is rapidly moving forward—and Utah is right at the center of the storm. Spearheaded by Health and Human Services Secretary Robert F. Kennedy Jr., the platform is being framed as a “real-world data” system rather than a “registry,” but the difference is mostly semantic. The scope of information proposed—ranging from insurance records and pharmacy data to behavioral notes and even smartwatch readings—is vast, sensitive, and, if mishandled, potentially harmful.
Utah already has a state-run autism registry, which means we have both the infrastructure and the most to lose if our state-level data is swept into a federal system without full consent or due process. This raises critical legal and ethical questions about autonomy, transparency, and how health data—especially that of children and individuals with disabilities—should be governed.
Why Utah Must Push Back Now
The U.S. Constitution offers protections that are directly relevant here: the Fourth Amendment guards against unreasonable search and seizure, and the Fourteenth guarantees due process. But even with these constitutional safeguards, centralized health platforms pose unprecedented risks—especially when data thought to be “de-identified” can, in many cases, be re-identified once cross-referenced with other datasets.
The time to act is now. Once a federal platform like this is built, undoing it—or reclaiming the data it collects—becomes far more complex. Utah’s elected leaders have a responsibility not only to our state’s residents but also to set a national precedent that health privacy must be protected at every level of government.
Autism Services Require Trust—And That Starts With Privacy
At Acclimate ABA, we understand that access to high-quality ABA therapy services in Utah depends on more than clinical support—it requires trust. Families deserve to know that the information they share about their children’s care is secure, private, and used only with clear consent.
That’s why we advocate for transparency and data protection in every aspect of care. As providers of ABA therapy services in Utah, we’re committed to not only helping children thrive through evidence-based programs, but also ensuring that families feel safe and respected at every step of the process.
Contact us today to learn more about how we support families through personalized, ethical care. We’ll guide you through your options, explain our process, and make sure you have the tools to make informed decisions. Your child’s progress is our top priority—and so is your peace of mind.
