Abstract
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.
Highlights
Digital epidemiology, 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
Taking existing ethical guidelines and the results from the EU project M-Eco (Denecke et al 2013) and the binational project SORMAS (Adeoye et al 2017) as starting point, we develop an ethical assessment model aiming at providing support in identifying relevant ethical concerns in DDD projects
The model supports in becoming aware, identifying and describing the ethical dimensions of a 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
Summary
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. Beauchamp and Childress (2001) introduced three main principles for medical ethics that are autonomy, wellfare, and justice When applying these principles in the context of digital disease detection, we need to consider that each person should have the right to decide about the usage of data and information concerning their private life – it is their right of informational self-determination. We have to distinguish primary and secondary usage of the results This impacts the ethical issues concerning confidence, privacy, data and patient security or justice: While a research applications such as doing an epidemiological study on the spread of diseases using data collected from Internet sources can exploit anonymised data, other applications store personal data or require data that allows to contact individuals (e.g. SORMAS).
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