An ethical assessment model for digital disease detection technologies.

Digital epidemiology, also referred to as digital disease detection (DDD), successfully
provided methods and strategies for using information technology to support
infectious disease monitoring and surveillance or understand attitudes and concerns
about infectious diseases. However, Internet-based research and social media usage in
epidemiology and healthcare pose new technical, functional and formal challenges.
The focus of this paper is on the ethical issues to be considered when integrating
digital epidemiology with existing practices. Taking existing ethical guidelines and the
results from the EU project M-Eco and SORMAS as starting point, we develop an ethical
assessment model aiming at providing support in identifying relevant ethical concerns
in future DDD projects. The assessment model has four dimensions: user, application
area, data source and methodology. The model supports in becoming aware,
identifying and describing the ethical dimensions of DDD technology or use case and
in identifying the ethical issues on the technology use from different perspectives. It
can be applied in an interdisciplinary meeting to collect different viewpoints on a DDD
system even before the implementation starts and aims at triggering discussions and
finding solutions for risks that might not be acceptable even in the development
phase. From the answers, ethical issues concerning confidence, privacy, data and
patient security or justice may be judged and weighted.