ArticleJournal of medical Internet research2019
Participatory Disease Surveillance Systems: Ethical Framework.
Article in Journal of medical Internet research, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Ethical issues raised by artificial intelligence and big data in population health: a scoping review.Frontiers in sociology · 2025Pooled it
- How to shore up trust during the "cold-period" between pandemics - closing the public trust gap in pandemic preparedness frameworks.Global health action · 2026Article
- Beyond fingerprint and voice print: cough sequence sound for identity verification.npj health systems · 2026Article
- Viral emergence and pandemic preparedness in a One Health framework.Nature reviews. Microbiology · 2026Review
- Cassava mosaic disease in Burkina Faso: epidemiological aspects and disease management perspectives.Discover agriculture · 2025Article
- Epidemic intelligence in Europe: a user needs perspective to foster innovation in digital health surveillance.BMC public health · 2024Article
- Unconventional data, unprecedented insights: leveraging non-traditional data during a pandemic.Frontiers in public health · 2024Article
- Investigating Employees' Concerns and Wishes Regarding Digital Stress Management Interventions With Value Sensitive Design: Mixed Methods Study.Journal of medical Internet research · 2023Article
- Smartphone apps in the COVID-19 pandemic.Nature biotechnology · 2022Review
- What ethical approaches are used by scientists when sharing health data? An interview study.BMC medical ethics · 2022Article
- Analytical mapping of information and communication technology in emerging infectious diseases using CiteSpace.Telematics and informatics · 2022Review
- Precision Public Health and Structural Racism in the United States: Promoting Health Equity in the COVID-19 Pandemic Response.JMIR public health and surveillance · 2022Article
- Data and Digital Solutions to Support Surveillance Strategies in the Context of the COVID-19 Pandemic.Frontiers in digital health · 2021Review
- COVID-19 surveillance systems in African countries.Health promotion perspectives · 2021Review
- Prioritizing COVID-19 tests based on participatory surveillance and spatial scanning.International journal of medical informatics · 2020Article
- Toward Detecting Infection Incidence in People With Type 1 Diabetes Using Self-Recorded Data (Part 1): A Novel Framework for a Personalized Digital Infectious Disease Detection System.Journal of medical Internet research · 2020Article
- Special Section on Ethics in Health Informatics.Yearbook of medical informatics · 2020Review
- A Case for Participatory Disease Surveillance of the COVID-19 Pandemic in India.JMIR public health and surveillance · 2020Article
- Social Media- and Internet-Based Disease Surveillance for Public Health.Annual review of public health · 2020Review
- Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland.Digital healthArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.