The Knowledge Powerhouse for Citizen Science on Law and Ethics

The Knowledge Powerhouse for Citizen Science on Law and Ethics is part of a task dissemination from SOCIO-BEE and aims to communicate the project’s work as well as existing resources in relation to law and ethics and subsequent lessons learnt to the general public, encouraging the uptake of citizen science, by creating a publicly available knowledge hub hosted on the project’s website.

ABOUT THIS POWERHOUSE

The Knowledge Powerhouse is made up of a wide variety of resources, ranging from guidelines to blog posts, policy documents, academic works etc. They are arranged by different thematic categories.

In this way, we can summarise, compact and expand the existing knowledge base intended for diverse audiences.

WHAT YOU CAN FIND

ETHICS

Academic resources
Blog posts and other commentaries
Guidelines
Principles and Codes
Tools

LAW

Academic resources

Guidelines

EU case law

ADDITIONAL RESOURCES

Academic resources, blog posts and other commentaries

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

Berti Suman, A., & Schade, S. (2022, February, 23). Our visual consent forms now out as Creative Commons. Retrieved from https://sensingforjustice.webnode.it/l/our-visual-consent-forms-now-out-as-creative-commons/

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

Citizen’s Guide to Open Data

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

Tools

Basic Research Concepts (Office of Research Integrity, USA)

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/

Research Ethics Online Training (World Health Organisation)

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

Other

EU case law

ADDITIONAL RESOURCES

information about artificial intelligence, drones, wearables…

Academic resources, blog posts and other commentaries

Berti Suman, A. (2018, December 14). Civic resistance to environmental failures from the South (of the North…): The AnalyzeBasilicata initiative – DATACTIVE. Retrieved from https://data-activism.net/2018/12/civic-resistance-to-environmental-failures-from-the-south-of-the-north-the-analyzebasilicata-initiative/

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

European Commission (n.d.). Citizen science: Inspiring examples of societal engagement for Horizon Europe. Retrieved from https://cordis.europa.eu/article/id/435872-citizen-science-inspiring-examples-of-societal-engagement-for-horizon-europe

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

The repository is continuously updated throughout the project phase. It consists of a variety of sources arranged by thematic category to facilitate consultation. We are, however, aware of their commonalities and overlaps. There will be a greater focus on sources more relevant to the European context because of our work in different member states, but we will also cite sources beyond the EU where relevant.

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.

CONTACT

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