Committee hears sponsor’s plan to repeal Delaware autism registry and expunge historic records

Senator Sturgeon introduced HB424, explaining the bill would repeal Delaware’s autism surveillance and registration program established in 2004. Under current law providers must report autism diagnoses to the state; the repeal would remove that reporting requirement and require the Department of Health and Social Services to expunge any protected health information collected through the registry.

Senator Sturgeon told the committee that DHSS told sponsors the registry is not currently used for analysis, research or policy development, and that modern data sources and heightened privacy expectations make the old approach obsolete. Stakeholders including Autism Delaware, the Delaware Health Care Association and the State Council for Persons with Disabilities registered support for repeal.

Committee members asked whether families whose data are in the registry would be notified before records are removed. Senator Sturgeon asked James Berryhill to address the process; Berryhill said the committee did not have a confirmed process for removing records from public archives and that he would check with the Division of Public Health about notifying parents. Alexis Galletti, policy advisor for DHSS who participated online, said she believed families would not be notified but that DPH could be asked to confirm.

Sponsor and committee members agreed it would be worthwhile to consider notifying families as expungement proceeds. The bill remains in committee pending final implementation details about record removal and notification.