Table 1.

Ethical framework for the regulation of participatory disease surveillance systems.

Principle	Ethical component	Considerations
Autonomy of participants	Electronic consent	Standard, reader-friendly, and multilingual informed consent form with succinctly summarized information (eg, as a single PDF file) delivered at the time of registration and each time new information is added to the digital platforms
		Informed nature of consent can be fostered through the provision of a few quiz questions to reduce the risk of participants simply “clicking through” the consent process
		Require digital signature of the consent form to incentivize participants to read the information form and as evidence of their identity
		Making participants aware of the fact that despite best effort to protect their privacy, the residual risk of a privacy leak cannot be ruled out
Nonmaleficence	Protection of participants’ privacy	Anonymization of participants’ data should be combined with other data security measures such as a highly protected centralized database for storage of participants’ data
		Location data of participants should never be mapped to the individual level but rather to the postal code level to reduce the risk of reidentification in case of rare value entries
		Sensor data from mobile phones should only be transmitted in anonymized and highly aggregated form
		Ensure ethical and accountable sharing of anonymized datasets between research institutions to reduce reidentification risks for participants through database triangulation
Justice	Access to information on disease activity and prevention strategies	Free, open, and nondiscriminative participation should be offered to members of the general public
		Disease prevention strategies and results obtained through the participatory surveillance platforms should be disseminated on a regular basis to members of the public through various means
Beneficence and nonmaleficence	Research ethics committees (RECs)	Interdisciplinary capacity building of RECs is required to keep up with technological advances, thereby ensuring an adequate protection of data subjects
		RECs should play a proactive role in the design and implementation of public health research involving digital communities of volunteer citizens
		RECs should act as safety nets to prevent barriers to public health surveillance by identifying ethico-legal grey zones and anticipate potential conflicting situations resulting from the evolving legal landscape