With changes at the federal level happening at breakneck speed, we’re here to help make sense of these changes—whether it’s concrete examples of what’s changing at the federal level and for states, responses and ideas from the field, or things our organization and others are exploring. To accomplish this, we’re periodically bringing you our thoughts on the most salient conversations happening as people work to navigate the current education and workforce field of play.
We’re writing this column together to combine our perspectives: Jenn’s expertise comes from decades of education leadership experience at all levels, from the classroom to the district and federal levels, while Paige brings almost two decades working on state and federal education data policy and issues.
Continuing the conversation from our last edition of the “So What,” we’re back with more to say about privacy. But this week, we’re taking a step outside of education and workforce to discuss an issue with clear ramifications for Americans’ ability to feel secure that their government will use their data appropriately—and that matters greatly to those in and out of education.
Recent announcements from Secretary of Health and Human Services Robert F. Kennedy Jr. have rightfully alarmed disability, data, and privacy advocates—including us. Billed as efforts to “study autism,” Kennedy has announced a “disease registry” (his term) that would be comprised of private information. This information, shared from sources like pharmacy chains, private insurers, and fitness trackers, would be available for selected researchers to access and study.
Now, let’s be clear: DQC has long advocated for data systems that bring together individual data across agencies and over time so that state and federal leaders can better understand and support individuals receiving or impacted by state and federal services like K–12 education, financial aid, Medicaid, and Supplemental Nutrition Assistance Program (SNAP) benefits. This is administrative data collected by and available to government agencies because they are providing a benefit or service and used for the purpose of furthering that benefit or service for people.
But what’s being suggested here is the opposite. Statewide longitudinal data systems are not registries. A registry of this nature is not voluntary or the result of receiving benefits and could be used to potentially harm the people whose data has been contributed.
Unequivocally, this is not something the administration should be pursuing. And it’s not just about this registry, specifically. Taken together with other actions and announcements from this administration, data and privacy experts have seen enough to know that they should be concerned.
This registry isn’t about education or workforce, but it’s yet another signal that norms and laws around government data systems are being marginalized for perceived political agendas. Schools are also where many students are first screened for autism and often have IEPs or the like. We can’t help but wonder about the connection between school data and this registry or how this might impact services students are receiving and their experience in schools. That’s why we’ll be watching closely as this develops and would love to hear what you think. What questions do you have?
