The Rise of Data-Driven Decision Making in Education
As a technology director and advocate for data-informed practices in education, I’ve seen firsthand how powerful data can be. But the proposed national autism registry raises urgent concerns about data privacy that every educator and policymaker should understand.
When used ethically, it helps improve instruction, identify support needs, and close equity gaps. But with great data comes great responsibility—and increasingly, the speed of data collection is outpacing the development of strong protections.
National Autism Registry: What Educators Need to Know About Data Privacy
The U.S. Department of Health and Human Services, under the leadership of Secretary Robert F. Kennedy Jr., has proposed a national autism registry that would collect extensive personal health data—including medical records, genomic profiles, and behavioral tracking—without requiring informed consent.
Advocates and experts across the spectrum have raised significant concerns. According to The Guardian, the proposal has alarmed disability rights groups, especially due to its language describing autism as “preventable” and implying that those with autism are less capable of leading meaningful lives.
The proposed registry not only lacks transparency but also threatens to undermine decades of advocacy for neurodiverse inclusion and privacy protections.
Privacy Risks Educators Can’t Afford to Ignore
As educators and technology leaders, we are stewards of some of the most sensitive data collected in society—information about student needs, supports, and identities. The proposed national autism registry may be framed as a public health initiative, but it intersects with educational systems in ways that can’t be ignored.
Data from evaluations, IEPs, and behavioral supports often inform autism diagnoses. Centralizing this type of information—without clear consent, oversight, or transparency—they expose students and families to serious privacy risks.
This isn’t just about compliance—it’s about trust. Families expect schools to protect their children’s information, and we have an ethical obligation to uphold that trust across every data touchpoint.
We need privacy laws that reflect the way data flows across sectors—not just within them. And we need to lead with transparency, consent, and protection, not afterthoughts or assumptions.
Harmful Narratives and Ethical Oversights
Beyond the data collection itself, there’s deep concern about the language and assumptions surrounding this registry. Referring to autism as a “preventable disease” and suggesting that autistic individuals cannot live meaningful lives is not only inaccurate—it’s stigmatizing and harmful.
As both an educator and a parent, I find these narratives deeply troubling. They underscore why ethical oversight must be embedded into any data initiative from the start.
The Case for Stronger State Legislation
Massachusetts leads in education—but lags behind in student data privacy. We’re still one of only a few states without a comprehensive student privacy law
H.633, sponsored by Rep. Kate Lipper-Garabedian and co-sponsored by Rep. Jeffrey Roy, is a critical step forward. The Future of Privacy Forum praised the bill, noting it “a solid privacy framework,” and it’s time for Massachusetts to catch up and lead again.
FERPA passed in 1974—long before today’s digital tools and platforms. but it doesn’t address modern realities like cross-agency data sharing or AI-driven analytics. Recent federal investigations in California and Maine serve as a reminder that student privacy is not just policy—it’s enforceable law.
H.633 would modernize protections, clarify responsibilities, and set ethical expectations for data use—strengthening the trust families place in our schools.
What You Can Do Next
Data privacy is not optional. It’s foundational to trust, inclusion, and ethical leadership.
As we navigate this moment of rapid innovation and shifting policy, it’s up to those of us closest to the work—educators, technologists, parents—to raise the bar for how data is collected, protected, and used. We don’t need to choose between innovation and privacy—we need to insist on both.
📣 Contact your legislators. Ask them to oppose the national autism registry and encourage support for responsible privacy legislation like H.633 for those in Massachusetts.
🧠 Join the conversation. Talk with your school leaders, IT staff, and policy teams about your district’s approach to data protection.
🔁 Share this post. Use your network to amplify the message and promote awareness.
Jenn Judkins is a Director of Technology in a Massachusetts public school district and Executive Director of The PD Collab. She serves on the board of METAA and co-chairs its Data Security Committee. The views shared here are her own.
