Intractable? Identifying Consensus Policy Opportunities to Address Legal and Ethical Challenges in National Public Health Surveillance from State and Local Epidemiologist Leaders.

Abstract

Background. Nearly all US jurisdictions that conduct syndromic surveillance to monitor public health threats send their data to the National Syndromic Surveillance Program (NSSP), operated by the Centers for Disease Control and Prevention (CDC). However, current data sharing agreements (DUAs) limit federal access to only multi-state regional aggregations. This limitation was a significant challenge for the national response to COVID-19 because federal agencies could not access available data to see how the pandemic was developing across state lines. Methods. NSSP DUAs (2018, 2021) between state/local governments and CDC NSSP were analyzed to: 1) determine whether DUA provisions are consistent with 2017 World Health Organization’s (WHO) ethical guidance; and 2) to determine the extent that legal provisions address (fully, partially, or omitted) policy opportunities identified by state and local epidemiologist leaders in a 2021 study. Results. The NSSP DUAs are in apparent conflict with the WHO ethical recommendations for sharing public health surveillance data between public health agencies. However, NSSP DUAs at least partially address all but three of the policy opportunities identified by state and local epidemiologist leaders (i.e., audit process, access restriction standards, breach responsibility). Conclusions. Imminent public health data modernization efforts require careful examination of existing legal and ethical challenges in public health surveillance. Critically, these findings suggest that these challenges are not intractable. In fact, federal, state, and local partners may be closer to agreement than they might realize. Moreover, several consensus policy opportunities (i.e., data analysis collaborations and developing communication protocols) provide a promising path forward.