Participatory Disease Surveillance Systems: Ethical Framework.

Advances in information technology are changing public health at an unprecedented rate. Participatory surveillance systems are contributing to public health by actively engaging digital (eg, Web-based) communities of volunteer citizens to report symptoms and other pertinent information on public health threats and also by empowering individuals to promptly respond to them. However, this digital model raises ethical issues on top of those inherent in traditional forms of public health surveillance. Research ethics are undergoing significant changes in the digital era where not only participants' physical and psychological well-being but also the protection of their sensitive data have to be considered. In this paper, the digital platform of Influenzanet is used as a case study to illustrate those ethical challenges posed to participatory surveillance systems using digital platforms and mobile apps. These ethical challenges include the implementation of electronic consent, the protection of participants' privacy, the promotion of justice, and the need for interdisciplinary capacity building of research ethics committees. On the basis of our analysis, we propose a framework to regulate and strengthen ethical approaches in the field of digital public health surveillance.

Research Ethics in the European Influenzanet Consortium: Scoping Review.

BACKGROUND: Influenzanet was launched in several European countries to monitor influenza-like illness during flu seasons with the help of volunteering participants and Web-based technologies. As in the case of developing fields, ethical approaches are not well developed in the collection, processing, and analysis of participants' information. Existing controversies and varying national ethical regulations can, thus, hamper efficient cross-border research collaboration to the detriment of quality disease surveillance. OBJECTIVE: This scoping review characterizes current practices on how ethical, legal, and social issues (ELSIs) pertinent to research ethics are handled by different Influenzanet country groups to analyze similarities and identify the need for further harmonization of ethical approaches. METHODS: A literature search was carried out on PubMed, Web of Science, Global Digital Library on Ethics, and Bioethics Literature Database to identify ELSIs for Influenzanet country platforms. Only English-language papers were included with publication dates from 2003 to 2017. Publications were screened for the application of bioethics principles in the implementation of country platforms. Additional publications gathered from the Influenzanet Consortium website, reference screening, and conference proceeding were screened for ELSIs. RESULTS: We gathered 96 papers from our search methodology. In total, 28 papers that mentioned ELSIs were identified and included in this study. The Research Ethics Committee (REC) approvals were sought for recruiting participants and collecting their data in 8 of 11 country platforms and informed e-consent was sought from participants in 9 of 11 country platforms. Furthermore, personal data protection was ensured throughout the Consortium using data anonymization before processing and analysis and using aggregated data. CONCLUSIONS: Epidemics forecasting activities, such as Influenzanet, are beneficial; however, its benefits could be further increased through the harmonization of data gathering and ethical requirements. This objective is achievable by the Consortium. More transparency should be promoted concerning REC-approved research for Influenzanet-like systems. The validity of informed e-consent could also be increased through the provision of a user friendly and standard information sheet across the Consortium where participants agree to its terms, conditions, and privacy policies before being able to fill in the questionnaire. This will help to build trust in the general public while preventing any decline in participation.

Temporal dynamics of online petitions.

Online petitions are an important avenue for direct political action, yet the dynamics that determine when a petition will be successful are not well understood. Here we analyze the temporal characteristics of online-petition signing behavior in order to identify systematic differences between popular petitions, which receive a high volume of signatures, and unpopular ones. We find that, in line with other temporal characterizations of human activity, the signing process is typically non-Poissonian and non-homogeneous in time. However, this process exhibits anomalously high memory for human activity, possibly indicating that synchronized external influence or contagion play and important role. More interestingly, we find clear differences in the characteristics of the inter-event time distributions depending on the total number of signatures that petitions receive, independently of the total duration of the petitions. Specifically, popular petitions that attract a large volume of signatures exhibit more variance in the distribution of inter-event times than unpopular petitions with only a few signatures, which could be considered an indication that the former are more bursty. However, petitions with large signature volume are less bursty according to measures that consider the time ordering of inter-event times. Our results, therefore, emphasize the importance of accounting for time ordering to characterize human activity.

Saving Human Lives: What Complexity Science and Information Systems can Contribute.

We discuss models and data of crowd disasters, crime, terrorism, war and disease spreading to show that conventional recipes, such as deterrence strategies, are often not effective and sufficient to contain them. Many common approaches do not provide a good picture of the actual system behavior, because they neglect feedback loops, instabilities and cascade effects. The complex and often counter-intuitive behavior of social systems and their macro-level collective dynamics can be better understood by means of complexity science. We highlight that a suitable system design and management can help to stop undesirable cascade effects and to enable favorable kinds of self-organization in the system. In such a way, complexity science can help to save human lives.

Eyjafjallajökull and 9/11: the impact of large-scale disasters on worldwide mobility.

Large-scale disasters that interfere with globalized socio-technical infrastructure, such as mobility and transportation networks, trigger high socio-economic costs. Although the origin of such events is often geographically confined, their impact reverberates through entire networks in ways that are poorly understood, difficult to assess, and even more difficult to predict. We investigate how the eruption of volcano Eyjafjallajökull, the September 11th terrorist attacks, and geographical disruptions in general interfere with worldwide mobility. To do this we track changes in effective distance in the worldwide air transportation network from the perspective of individual airports. We find that universal features exist across these events: airport susceptibilities to regional disruptions follow similar, strongly heterogeneous distributions that lack a scale. On the other hand, airports are more uniformly susceptible to attacks that target the most important hubs in the network, exhibiting a well-defined scale. The statistical behavior of susceptibility can be characterized by a single scaling exponent. Using scaling arguments that capture the interplay between individual airport characteristics and the structural properties of routes we can recover the exponent for all types of disruption. We find that the same mechanisms responsible for efficient passenger flow may also keep the system in a vulnerable state. Our approach can be applied to understand the impact of large, correlated disruptions in financial systems, ecosystems and other systems with a complex interaction structure between heterogeneous components.