The Department of Health and Human Services (HHS) has proposed collecting data on people with autism who are enrolled in Medicare and Medicaid, in an effort to address disparities in diagnosis and access to care.

AS NBC reports, HHS will partner up to build the database, using insurance claims data, electronic medical records and wearable technology, like smartwatches.

In a news release, the agency said researchers would focus on autism diagnosis trends, outcomes from medical and behavior therapies, access to care and disparities by demographics and geography, and health care costs.

While addressing these disparities is a worthy goal, the collection and use of sensitive personal data — especially related to health and identity — must be done with transparency and respect for individual consent.

Autism advocates believe this would be a serious violation of privacy.

Autistic people, like all individuals, deserve control over their personal health information. Whether for research, policymaking, or public health programs, no federal agency should use someone’s personal data without their explicit permission.

We are calling on HHS and Secretary Robert F. Kennedy Jr. to require informed, opt-in consent from individuals with autism before using their personal data in any federal study.

Clearly communicate how data will be used, stored, and protected.
Ensure that participation in federal benefits programs is never tied to forced data sharing.

Privacy is not a barrier to progress — it’s a requirement for ethical, inclusive health policy.