The Knowledge Powerhouse for Citizen Science on Law and Ethics
ABOUT THIS POWERHOUSE
In this way, we can summarise, compact and expand the existing knowledge base intended for diverse audiences.
WHAT YOU CAN FIND
ETHICS
Blog posts and other commentaries
Guidelines
Principles and Codes
Tools
LAW
Guidelines
EU case law
ADDITIONAL RESOURCES
EU projects and documents
ETHICS
Academic resources, blog posts and commentaries, principles and codes of ethics, tools and use of innovative technologies
Academic resources
General
Ficorilli, A., Maccani, G., Balestrini, M., Biggeri, A., De Marchi, B., Froeling, F., Gignac, F., Grazuleviciene, R., Hoek, G., Kanduč, T., Kocman, D., Righi, V., & Basagana, X. (2021). Investigating the process of ethical approval in citizen science research: The case of Public Health. Journal of Science Communication, 20, A04. https://doi.org/10.22323/2.20060204
Goodwin, J., & Roberts, L. (2019). Citizen Science Ethics: It’s a Community Thing. Narrative Inquiry in Bioethics, 9(1), 35–40. Retrieved from https://www.researchgate.net/publication/332725062_Citizen_Science_Ethics_It%27s_a_Community_Thing
Groot, B., & Abma, T. (2022). Ethics framework for citizen science and public and patient participation in research. BMC Medical Ethics, 23(1), 23. https://doi.org/10.1186/s12910-022-00761-4
Ficorilli, A. (2020, September 14). Ethical Aspects of Citizen Science Projects at ECSA 2020 Conference. Cities Health. Retrieved from https://citieshealth.eu/2020/09/14/ethical-aspects-of-citizen-science-projects-at-ecsa-2020-conference/
Kasperowski, D., Hagen, N., & Rohden, F. (2022). Ethical boundary work in citizen science: Themes of insufficiency. Nordic Journal of Science and Technology Studies. https://doi.org/10.5324/njsts.v10i1.4318
Oberle, K. M., Page, S. A., Stanley, F. K., & Goodarzi, A. A. (2019). A reflection on research ethics and citizen science. Research Ethics, 15(3–4), 1–10. https://doi.org/10.1177/1747016119868900
Patrick-Lake, B., & Goldsack, J. C. (2019). Mind the Gap: The Ethics Void Created by the Rise of Citizen Science in Health and Biomedical Research. The American Journal of Bioethics, 19(8), 1–2. https://doi.org/10.1080/15265161.2019.1639389
Rasmussen, L. M. (2019). Confronting Research Misconduct in Citizen Science. Citizen Science: Theory and Practice, 4(1), 10. https://doi.org/10.5334/cstp.207
Rasmussen, L. M., & Cooper, C. (2019). Citizen Science Ethics. Citizen Science: Theory and Practice, 4(1), 5. https://doi.org/10.5334/cstp.235
Reiheld, A., & Gay, P. L. (2019). Coercion, Consent, and Participation in Citizen Science (arXiv:1907.13061). arXiv. https://doi.org/10.48550/arXiv.1907.13061
Resnik, D. B. (2019). Citizen Scientists as Human Subjects: Ethical Issues. Citizen Science: Theory and Practice, 4(1), 11. https://doi.org/10.5334/cstp.150
Resnik, D. B., Elliott, K. C., & Miller, A. K. (2015). A framework for addressing ethical issues in citizen science. Environmental Science & Policy, 54, 475–481. Retrieved from https://www.researchgate.net/publication/277960199_A_framework_for_addressing_ethical_issues_in_citizen_science
Riesch, H., & Potter, C. (2014). Citizen science as seen by scientists: Methodological, epistemological and ethical dimensions. Retrieved from https://bura.brunel.ac.uk/handle/2438/10337
Tauginienė, L., Hummer, P., Albert, A., Cigarini, A., & Vohland, K. (2021). Ethical Challenges and Dynamic Informed Consent. In K. Vohland, A. Land-Zandstra, L. Ceccaroni, R. Lemmens, J. Perelló, M. Retrieved from https://link.springer.com/chapter/10.1007/978-3-030-58278-4_20
Additional resources
Banks, S., & Brydon-Miller, M. (2018). Ethics in participatory research. In S. Banks & M. Brydon-Miller (Eds.), Banks, S. & Brydon-Miller, M. (Eds.). (2018). Ethics in participatory research for health and social well-being: Cases and commentaries. Abingdon, Oxon: Routledge, pp. 1-30 (pp. 1–30). Routledge. https://dro.dur.ac.uk/26374/
Bietz, M., Patrick, K., & Bloss, C. (2019). Data Donation as a Model for Citizen Science Health Research. Citizen Science: Theory and Practice, 4(1), 6. https://doi.org/10.5334/cstp.178
Bowser, A., Shilton, K., Preece, J., & Warrick, E. (2017). Accounting for Privacy in Citizen Science: Ethical Research in a Context of Openness. Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing, 2124–2136. https://doi.org/10.1145/2998181.2998305
Brown, P., Morello-Frosch, R., Brody, J. G., Altman, R. G., Rudel, R. A., Senier, L., Pérez, C., & Simpson, R. (2010). Institutional review board challenges related to community-based participatory research on human exposure to environmental toxins: A case study. Environmental Health, 9(1), 39. https://doi.org/10.1186/1476-069X-9-39
Eleta, I., Clavell, G. G., Righi, V., & Balestrini, M. (2019). The Promise of Participation and Decision-Making Power in Citizen Science. Citizen Science: Theory and Practice, 4(1), 8. https://doi.org/10.5334/cstp.171
Flicker, S., Travers, R., Guta, A., McDonald, S., & Meagher, A. (2007). Ethical Dilemmas in Community-Based Participatory Research: Recommendations for Institutional Review Boards. Journal of Urban Health, 84(4), 478–493. https://doi.org/10.1007/s11524-007-9165-7
Guerrini, C. J., Crossnohere, N. L., Rasmussen, L., & Bridges, J. F. P. (2021). A best–worst scaling experiment to prioritize concern about ethical issues in citizen science reveals heterogeneity on people-level v. Data-level issues. Scientific Reports, 11(1), 19119. https://doi.org/10.1038/s41598-021-96743-4
Hansen, J. S., Gadegaard, S., Hansen, K. K., Larsen, A. V., Møller, S., Thomsen, G. S., & Holmstrand, K. F. (2021). Research Data Management Challenges in Citizen Science Projects and Recommendations for Library Support Services. A Scoping Review and Case Study. Data Science Journal, 20(1), 25. https://doi.org/10.5334/dsj-2021-025
Lynn, S. J., Kaplan, N., Newman, S., Scarpino, R., & Newman, G. (2019). Designing a Platform for Ethical Citizen Science: A Case Study of CitSci.org. Citizen Science: Theory and Practice, 4(1), 14. https://doi.org/10.5334/cstp.227
Majumder, M. A., & McGuire, A. L. (2020). Data Sharing in the Context of Health-Related Citizen Science. Journal of Law, Medicine & Ethics, 48(S1), 167–177. Retrieved from https://journals.sagepub.com/doi/10.1177/1073110520917044
Roy, S., & Edwards, M. (2019). Citizen Science During the Flint, Michigan Federal Water Emergency: Ethical Dilemmas and Lessons Learned. Citizen Science: Theory and Practice, 4(1), 12. https://doi.org/10.5334/cstp.154
Scheibner, J., Jobin, A., & Vayena, E. (2021). Ethical Issues with Using Internet of Things Devices in Citizen Science Research: A Scoping Review. Frontiers in Environmental Science, 9, 629649. https://doi.org/10.3389/fenvs.2021.629649
Sorensen, A. E., Jordan, R. C., LaDeau, S. L., Biehler, D., Wilson, S., Pitas, J.-H., & Leisnham, P. T. (2019). Reflecting on Efforts to Design an Inclusive Citizen Science Project in West Baltimore. Citizen Science: Theory and Practice, 4(1), 13. https://doi.org/10.5334/cstp.170
Blog posts and other commentaries
Biggeri, A. (n.d.). Un’etica per ogni pratica scientifica, anche per quella dei cittadini. [An ethics for every scientific practice, even for that of citizens] www.epiprev.it. Retrieved, from https://epiprev.it/4451
Citizen Science Projects Surging, But Often Lack IRB Ethical Oversight (n.d.). Relias Media. Retrieved from https://www.reliasmedia.com/articles/149105-citizen-science-projects-surging-but-often-lack-irb-ethical-oversight
Didio, A. (n.d.). Assent from & Informative material for minors. Arise Initiative Retrieved from https://www.ariseinitiative.org/wp-content/uploads/2020/07/Didio_Assent-form-Informative-material-for-minors.pdf
CSA WEBINAR Citizen Science Ethics 101 (2018, September, 18). Citizen Science Association. Retrieved from https://www.youtube.com/watch?v=Kj3udfvtFdY
CSA WEBINAR Situation Assessment and Stakeholder Analysis for Citizen Science (2018, November 30). Citizen Science Association. Retrieved from https://www.youtube.com/watch?v=1w2f70N4sao&t=11s
Ficorilli, A. (n.d.). Quale etica per la citizen science? [What ethics for citizen science?] www.epiprev.it. Retrieved from https://epiprev.it/4452
Gilbert, S. (2019, October 21). Citizen Science: Potential Benefits and Ethical Challenges. The Hastings Center. https://www.thehastingscenter.org/citizen-science-potential-benefits-and-ethical-challenges/
Herman, J. (2020, November 2). An Ethical Code for Citizen Science? Retrieved from http://justice-everywhere.org/democracy/tbd/
Rasmussen, L. (n.d.). Filling the ‘Ethics Gap’ in Citizen Science Research: A Workshop Report. 12. https://www.niehs.nih.gov/research/supported/translational/peph/webinars/ethics/rasmussen_508.pdf
Stone, J. (n.d.). Of Citizen Science, Ethics, and IRBs the view from Science Online. Scientific American Blog Network. Retrieved from https://blogs.scientificamerican.com/molecules-to-medicine/of-citizen-science-ethics-and-irbs-the-view-from-science-online/
Tribur, M. (2019, October 3). What Makes for Ethical Citizen Science Research? Eos. http://eos.org/articles/what-makes-for-ethical-citizen-science-research
Ficorilli, A. (2020, May 29). What ethics for citizen science? Cities Health. Retrieved from https://citieshealth.eu/2020/05/29/what-ethics-for-citizen-science/
Network of the National Library of Medicine [NNLM] (Director). (2021, May 14). Ethical Considerations In Citizen Science with Dr. Rasmussen. https://www.youtube.com/watch?v=7ZKBtrGUaEU
Guidelines
General
International Compilation of Human Research Standards
Ethics and privacy guidelines by SCIVIL (Knowledge center for citizen science in Flanders)
Citizen science at universities: Trends, guidelines and recommendations
EU
European Union Agency for Cybersecurity. (2021). Data pseudonymisation: Advanced techniques and use cases : technical analysis of cybersecurity measures in data protection and privacy. Publications Office. https://data.europa.eu/doi/10.2824/860099
European Union Agency for Cybersecurity. (2022a). Data protection engineering: From theory to practice. Publications Office. https://data.europa.eu/doi/10.2824/09079
European Union Agency for Cybersecurity. (2022b). Deploying pseudonymisation techniques: The case of health sector. Publications Office. https://data.europa.eu/doi/10.2824/092874
Schade, S., & Tsinaraki, C. (2016, May 18). Survey report: Data management in Citizen Science projects. JRC Publications Repository. https://doi.org/10.2788/539115
European Network and Information Security Agency. (2019). Pseudonymisation techniques and best practices: Recommendations on shaping technology according to data protection and privacy provisions. Publications Office. https://data.europa.eu/doi/10.2824/247711
Principles and codes of ethics
Tools
EU-Citizen.Science (2022, March 21). Basic regulations and ethics for citizen science. Retrieved from https://eu-citizen.science/resource/321
Research ethics (ACTION Project)
PANELFIT. (n.d.) Main Tools and Actions. https://guidelines.panelfit.eu/the-gdpr/main-tools-and-actions/
Use of innovative technologies
Artificial Intelligence
European Commission (2019, April 8). Ethics guidelines for trustworthy AI. Retrieved from https://digital-strategy.ec.europa.eu/en/library/ethics-guidelines-trustworthy-ai
Ceccaroni, L., Bibby, J., Roger, E., Flemons, P., Michael, K., Fagan, L., & Oliver, J. L. (2019). Opportunities and Risks for Citizen Science in the Age of Artificial Intelligence. Citizen Science: Theory and Practice, 4(1), 29. https://doi.org/10.5334/cstp.241
Drones
EASA (2022, September 28). Easy Access Rules for Unmanned Aircraft Systems (Regulation (EU) 2019/947 and Regulation (EU) 2019/945)—Revision from September 2021—Available in online format. Retrieved from https://www.easa.europa.eu/en/document-library/easy-access-rules/easy-access-rules-unmanned-aircraft-systems-regulation-eu
EASA (2020, April 6). EASA publishes first rules for safe drone operations in Europe’s cities. Retrieved from https://www.easa.europa.eu/en/newsroom-and-events/press-releases/easa-publishes-first-rules-safe-drone-operations-europes-cities
EASA (2021, March 3). Drones Information Notices—Classes 0-6. Retrieved from https://www.easa.europa.eu/en/document-library/general-publications/drones-information-notices
Drones (UAS). (n.d.). EASA. Retrieved from https://www.easa.europa.eu/en/the-agency/faqs/drones-uas
Wearables
European Commission (2018, February 26). Feedback from stakeholders on the Smart Wearables reflection and orientation paper. Retrieved from https://digital-strategy.ec.europa.eu/en/news/feedback-stakeholders-smart-wearables-reflection-and-orientation-paper
ENISA (2019, November 19). Good Practices for Security of IoT - Secure Software Development Lifecycle. [Report/Study]. Retrieved from https://www.enisa.europa.eu/publications/good-practices-for-security-of-iot-1
ENISA (2020, November 9). Guidelines for Securing the Internet of Things. [Report/Study]. Retrieved from https://www.enisa.europa.eu/publications/guidelines-for-securing-the-internet-of-things
LAW
General legal information, case studies, case law, citizen science and data practices
Academic resources
General
Champion, S. (n.d.). Internet of Things Devices, Citizen Science Research and the Right to Science: Ethical and Legal Issues. HIIG. Retrieved from https://www.hiig.de/publication/internet-of-things-devices-citizen-science-research-and-the-right-to-science/
Citizen Science Association (n.d.). Research Articles & Case Studies. Google Docs. Retrieved from https://docs.google.com/document/d/1v6sJkRfrzEoeqyRfcRmSW9McZUi7-fGdQtTvBOzSwDA/edit?usp=embed_facebook
Misonne, D. (2021). The emergence of a right to clean air: Transforming European Union law through litigation and citizen science. Review of European, Comparative & International Environmental Law, 30(1), 34–45. Retrieved from https://researchnow.flinders.edu.au/en/publications/internet-of-things-devices-citizen-science-research-and-the-right
Pierce, R., & Evram, M. (2022). Getting it right: Implementing data protection in citizen science research. Insights, 35(0), 2. https://doi.org/10.1629/uksg.538
Quinn, P. (2018). Is the GDPR and Its Right to Data Portability a Major Enabler of Citizen Science? Global Jurist, 18(2). Retrieved from https://www.researchgate.net/publication/325635784_Is_the_GDPR_and_Its_Right_to_Data_Portability_a_Major_Enabler_of_Citizen_Science
Scassa, T., & Chung H. (2015). Managing Intellectual Property Rights in Citizen Science: A Guide for Researchers and Citizen Scientists. Washington, DC: Woodrow Wilson International Center for Scholars. Retrieved from https://www.wilsoncenter.org/publication/managing-intellectual-property-rights-citizen-science-guide-for-researchers-and-citizen
Additional resources
Dove, E. S., & Chen, J. (2020). To What Extent Does the EU General Data Protection Regulation (GDPR) Apply to Citizen Scientist-Led Health Research with Mobile Devices? The Journal of Law, Medicine & Ethics, 48(1_suppl), 187–195. Retrieved from https://journals.sagepub.com/doi/10.1177/1073110520917046
Quinn, P. (2021). Research under the GDPR – a level playing field for public and private sector research? Life Sciences, Society and Policy, 17(1), 4. https://doi.org/10.1186/s40504-021-00111-z
Guidelines
EU
- Clarifications on the consistent application of the GDPR, focusing on health research (European Data Protection Board)
- EU-Citizen.Science. (n.d.). Training Resources: Law. Retrieved from https://eu-citizen.science/training_resources?keywords=Law
- IPR and the Use of Open Data and Data Sharing Initiatives by Public and Private Actors
Other
- Drones and Data Protection (Spanish Data Protection Agency)
- Article 29 Data Protection Working Party (2017, October 4). Guidelines on Data Protection Impact Assessment (DPIA) and determining whether processing is “likely to result in a high risk” for the purposes of Regulation 2016/679. Retrieved from https://ec.europa.eu/newsroom/article29/items/611236/en
EU case law
- Opinion of Advocate General in Case C-61/21, European Union: Court of Justice of the European Union, 5 May 2022. Retrieved at vailable at: https://curia.europa.eu/jcms/upload/docs/application/pdf/2022-05/cp220078en.pdf
- ClientEarth (2021, June). Individual right to clean and healthy air in the EU. Retrieved from https://www.clientearth.org/media/adtcznde/individual-right-to-clean-and-healthy-air-in-the-eu-pdf.pdf
ADDITIONAL RESOURCES
information about artificial intelligence, drones, wearables...
Academic resources, blog posts and other commentaries
Drones & Science Apps in citizen science
de Sherbinin, A., Bowser, A., Chuang, T.-R., Cooper, C., Danielsen, F., Edmunds, R., Elias, P., Faustman, E., Hultquist, C., Mondardini, R., Popescu, I., Shonowo, A., & Sivakumar, K. (2021). The Critical Importance of Citizen Science Data. Frontiers in Climate, 3, 650760. https://doi.org/10.3389/fclim.2021.650760
Eitzel, M. V., Cappadonna, J. L., Santos-Lang, C., Duerr, R. E., Virapongse, A., West, S. E., Kyba, C. C. M., Bowser, A., Cooper, C. B., Sforzi, A., Metcalfe, A. N., Harris, E. S., Thiel, M., Haklay, M., Ponciano, L., Roche, J., Ceccaroni, L., Shilling, F. M., Dörler, D., … Jiang, Q. (2017). Citizen Science Terminology Matters: Exploring Key Terms. Citizen Science: Theory and Practice, 2(1), 1. https://doi.org/10.5334/cstp.96
EU-Citizen.Science: Resources. (n.d.). Retrieved from https://eu-citizen.science/resources
García, F. S., Pelacho, M., Woods, T., Fraisl, D., See, L., Haklay, M. (Muki), & Arias, R. (2021). Finding What You Need: A Guide to Citizen Science Guidelines. The Science of Citizen Science, 419–437. https://doi.org/10.1007/978-3-030-58278-4_21
Hecker, S., Haklay, M., Bowser, A., Makuch, Z., Vogel, J., & Bonn, A. (Eds.). (2018). Citizen Science: Innovation in Open Science, Society and Policy. UCL Press. Retrieved from https://library.oapen.org/handle/20.500.12657/28178
Vohland, K., Land-Zandstra, A., Ceccaroni, L., Lemmens, R., Perelló, J., Ponti, M., Samson, R., & Wagenknecht, K. (Eds.). (2021). The Science of Citizen Science. Springer International Publishing. https://doi.org/10.1007/978-3-030-58278-4
Working groups – European Citizen Science Association (ECSA). (n.d.). Retrieved from https://ecsa.citizen-science.net/working-groups/
EU projects and documents
Cattaneo, B. (2019, April 30). Examining the use and practices of Citizen Science for EU policies [Text]. JRC Science Hub Communities - European Commission. https://ec.europa.eu/jrc/communities/en/community/citizensdata
An inventory of citizen science activities for environmental policies. (European Commission)
European Commission. Joint Research Centre. (2016). Survey report: Data management in Citizen Science projects. Publications Office. https://data.europa.eu/doi/10.2788/539115
EU-Citizen.Science. (n.d.). Retrieved from https://eu-citizen.science/
European Environment Agency (2020, March 12). Assessing air quality through citizen science. [Publication]. Retrieved from https://www.eea.europa.eu/publications/assessing-air-quality-through-citizen-science
Fullerton, K. (2020, November 23). Best Practices in Citizen Science for Environmental Monitoring [Text]. JRC Science Hub Communities - European Commission. https://ec.europa.eu/jrc/communities/en/community/examining-use-and-practices-citizen-science-eu-policies/page/best-practices-citizen
PANELFIT GUIDELINES. (n.d.). Guidelines Panelfit. Retrieved from https://guidelines.panelfit.eu/
Klimczuk, A., et al. (2021). ICTs, data and vulnerable people: A guide for citizens (SSRN Scholarly Paper No. 3939143). https://papers.ssrn.com/abstract=3939143
Schade, S. (2019, December 3). Policy Perspectives on Citizen Science and Crowdsourcing: A special issue of CS:TP [Text]. JRC Science Hub Communities - European Commission. https://ec.europa.eu/jrc/communities/en/community/citizensdata/discussion/policy-perspectives-citizen-science-and-crowdsourcing-special
Sofsky, F., & Ciucci, M. (2022, February 22). Recent Studies on Artificial Intelligence. Retrieved from https://www.europarl.europa.eu/RegData/etudes/ATAG/2022/703351/IPOL_ATA(2022)703351_EN.pdf
Veeckman, C., Keersmaekers, F., Verbrugge, K., & Livémont, E. (2022). D3.3 Citizen Science Starters Kit (Online Citizen Science Training Materials). https://doi.org/10.5281/zenodo.7014861
DISCLAIMER
Although this repository focuses primarily on law and ethics within citizen science, it may also cover adjacent topics that may be useful within this framework. On top of this, there is a brief focus on certain innovative technologies such as drones, wearables and artificial intelligence as these are used within the SOCIO-BEE project.
The information in the Knowledge Powerhouse is non-exhaustive and we will continue to add resources that are relevant throughout the project. We are open to new items and suggestions on how to enrich the platform (see contact form below).
It is always possible that in the meantime, some sources may change domain or be taken offline. This will be checked every so often and in the run-up to the second release in month 33 of the project (July 2024).
The KPH is an initiative of the SOCIO-BEE consortium. It was developed and sustained by Luka van der Veer, researcher at the Health and Ageing Law Lab (HALL) and the Law, Science, Technology and Society research group (LSTS) of the Vrije Universiteit Brussel (VUB), in cooperation with the SOCIO-BEE website operators. The KPH is the outcome of work and research conducted for Work Package 6.
The views expressed in the third-party publications featured on the KPH are the sole responsibility of their authors.
