AN ACT TO AMEND TITLE 16 RELATING TO AUTISM SURVEILLANCE AND REGISTRATION.
HB424 repeals Delaware’s existing Autism Surveillance and Registration Program in Title 16. The bill removes the statutory framework that had required certain health care practitioners, hospitals, and clinical laboratories to report autism diagnoses and related information to the Department of Health and Social Services for inclusion in a state registry and surveillance system. It also eliminates the associated definitions, reporting procedures, confidentiality provisions, and civil penalty for noncompliance that were part of the prior program.
In addition to repealing the program, the bill directs DHSS to expunge all protected health information collected at the individual level under the repealed subchapter within six months of enactment, while allowing the department to retain aggregate data. The synopsis explains that the repeal responds to provider concerns about privacy, ethics, and the lack of parental consent, and notes that the state’s current autism strategy is focused on awareness and screening rather than registry-based data collection.
The bill would remove an entire subchapter of Title 16 governing autism surveillance and registration, ending mandatory reporting obligations for specified health care providers and institutions and eliminating the state autism registry as a legal program. It would also require DHSS to destroy individual-level protected health information previously collected under that program, subject to existing confidentiality rules, while preserving aggregate data for possible continued public health use. This changes the legal duties of providers, hospitals, and laboratories and narrows DHSS’s authority in this area.
The overall sentiment reflected in the bill materials is supportive of repeal, with the synopsis emphasizing privacy, ethics, and parental consent concerns as the reasons for ending the program. The bill appears framed as a corrective measure to a passive registry system that was not being used for analysis or review, and to align state practice with a public health approach centered on awareness and screening. No opposing vote or committee testimony is provided in the record supplied.
The main points of contention are the collection and retention of personally identifiable autism-related health information, the absence of parental consent, and whether mandatory reporting and registry-based surveillance are appropriate public health tools. Providers reportedly raised concerns about privacy and ethics, while the prior law had imposed reporting duties and penalties on clinicians and institutions. The bill resolves those disputes by repealing the reporting regime and requiring expungement of individual-level records, but allowing aggregate data retention.