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Participatory Disease Surveillance Systems: Ethical Framework.

Lester Darryl Geneviève1, Andrea Martani1, Tenzin Wangmo1

  • 1Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.

Journal of Medical Internet Research
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Digital public health surveillance, using systems like Influenzanet, engages citizens but raises new ethical concerns. This study proposes a framework to address electronic consent, privacy, and justice in digital health research.

Keywords:
ethicsinfluenza, humanpublic health surveillanceresearchsmartphone

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Area of Science:

  • Public Health
  • Digital Health
  • Information Technology

Background:

  • Information technology is rapidly transforming public health surveillance.
  • Participatory surveillance systems leverage digital communities for real-time health threat reporting.
  • The digital shift introduces novel ethical considerations beyond traditional surveillance.

Purpose of the Study:

  • To identify and analyze ethical challenges in digital participatory surveillance systems.
  • To use the Influenzanet platform as a case study for examining these challenges.
  • To propose a framework for strengthening ethical approaches in digital public health surveillance.

Main Methods:

  • Case study analysis of the Influenzanet digital platform.
  • Examination of ethical issues including electronic consent and data privacy.
  • Review of principles such as justice and the need for interdisciplinary ethics review.

Main Results:

  • Digital participatory surveillance presents unique ethical challenges.
  • Key issues include electronic consent, participant privacy, and equitable participation.
  • Interdisciplinary capacity building for ethics committees is crucial.

Conclusions:

  • A structured framework is needed to guide ethical practices in digital public health surveillance.
  • Addressing electronic consent, privacy, and justice is paramount for responsible innovation.
  • Strengthening research ethics committees is essential for navigating the digital health landscape.