Ethics Framework and Guidelines:


A guide for research funding organizations implementing participatory activities

Table of Contents

Ethics Framework and Guidelines »List of Abbreviations »Preamble »Introduction »
Part I: General Consideration »On ethics »General considerations on ethics »Ethical assessment procedures and the ethics review »On participation »General considerations on participatory practices »Experiences with the ethics framework »
Part II: Tools & Guidelines »A. How should participatory processes be structured? »B. Which type of activity is targeted by the participatory process? »C. Which types of participants are targeted? »D. What are ethical issues and risks? »E. How can equal and meaningful dialogue be fostered? »F. How should participatory processes be monitored & reflected upon? »
Glossary »EC Reference Documents »Endnotes »

Endnotes

  1. See for instance how participatory research practices are being actively supported by the European Commission (EC) through their inclusion in the various funding instruments of Horizon Europe, including the clusters and missions, to address “wicked problems”.


  2. The Horizon-funded PSF MLE on Citizen Science Initiatives – Policy and Practicepointed out the importance of dedicated funding as an instrument for enabling citizen science and engagement more broadly. See: European Commission, Directorate-General for Research and Innovation, 2023. Mutual learning exercise on citizen science initiatives: policy and practice. Fourth Thematic Report: Enabling environments and sustaining citizen science. Publications Office of the European Union. https://data.europa.eu/doi/10.2777/305248


  3. For an in-depth discussion on this issue, see Giannelos, K., Reber, B., Doorn, N., Hövel, P., Lanzerath, D., Tambornino, L., 2021. PRO-Ethics D1.2 Paper Manuscript on Participatory Practices and Ethics Issues in Innovation. Zenodo. https://doi.org/10.5281/zenodo.7980377


  4. Still, it must be noted that soft governance of algorithmic systems through ethics – even if formalized and ostensibly regulated – is often insufficient, and sometimes even employed strategically to distract both legislators and society from more fundamental issues when it comes to the intersection of societal, commercial, academic, and political interests. For data justice as a valuable tool for approaching data and AI governance, see: Solano, J.L., Martin, A., de Souza, S., Taylor, L., 2022. Governing data and artificial intelligence for all: Models for sustainable and just data governance. European Parliament. Directorate General for Parliamentary Research Services. Brussels. https://www.doi.org/10.2861/915401


  5. Van den Hoven, J., 2014. Responsible Innovation: A New Look at Technology and Ethics. In M. J. Van den Hoven, N. Doorn, T. Swierstra, B. Koops & H. Romijn (Eds.), Responsible Innovation 1: Innovative Solutions for Global Issues. Dordrecht: Springer, pp. 4-7.


  6. Reber, B., 2016. Precautionary Principle, Pluralism and Deliberation: Science and Ethics. London/New York: ISTE/John Wiley & Sons.7. From the UNESCO website: https://www.unesco.org/en/open-science/about (accessed 26.05.2023) Read the Recommendations here: UNESCO, 2021. UNESCO Recommendation on Open Science. United Nations Educational, Scientific and Cultural Organization. https://doi.org/10.5281/zenodo.5834767


  7. From the UNESCO website: https://www.unesco.org/en/open-science/about (accessed 26.05.2023) Read the Recommendations here: UNESCO, 2021. UNESCO Recommendation on Open Science. United Nations Educational, Scientific and Cultural Organization. https://doi.org/10.5281/zenodo.583476


  8. From the ECSA website: https://www.ecsa.ngo/ (accessed 26.05.2023) Read ECSA’s 10 Principles of Citizen Science here: ECSA (European Citizen Science Association), 2015. Ten Principles of Citizen Science. https://doi.org/10.17605/OSF.IO/XPR2N


  9. OECD, 2020. Addressing societal challenges using transdisciplinary research. OECD Science, Technology and Industry Policy Papers. No. 88, p. 9. OECD Publishing. Paris. https://doi.org/10.1787/0ca0ca45-en


  10. Von Schomberg, R., 2012. Prospects for Technology Assessment in a framework of responsible research and innovation. Technikfolgen abschätzen lehren: Bildungspotenziale transdisziplinärer Methode, pp. 39-61. Wiesbaden: Springer VS. For more information and practical support in the application of ethics in RRI, visit https://rri-tools.eu/ethics (accessed 26.05.2023).


  11. Stilgoe, J., Owen, R., Macnaghten, P., 2013. Developing a framework for responsible innovation. Res. Policy 42, pp.1568–1580. https://doi.org/10.1016/j.respol.2013.05.008


  12. Harremoës, P., Gee, D., MacGarvin, M., Stirling, A., Keys, J., Wynne, B., Guedes Vaz, S., 2001. Late lessons from early warnings: the precautionary principle 1896-2000, Environment issue report. Copenhagen, Denmark. https://doi.org/10.4324/9781315071985-14


  13. DGRI, 2020. Strategic Plan 2020-2024, p. 4. https://commission.europa.eu/system/files/2020-11/rtd_sp_2020_2024_en.pdf


  14. On the necessity and pitfalls of better aligning research policy and ethical and societal values, see: Novitzky, P., Bernstein, M.J., Blok, V., Braun, R., Chan, T.T., Lamers, W., Loeber, A., Meijer, I., Lindner, R., Griessler, E., 2020. Improve alignment of research policy and societal values. Science 369, pp. 39–41. https://doi.org/10.1126/science.abb3415


  15. Von Schomberg, R., 2013. A Vision of Responsible Research and Innovation, Responsible Innovation: Managing the Responsible Emergence of Science and Innovation in Society. https://doi.org/10.1002/9781118551424.ch3


  16. Grunwald, A., Achternbosch, M., 2013. Technology Assessment and Approaches to Early Engagement, in: Doorn, N., Schuurbiers, D., Van de Poel, I., Gorman, M.E. (Eds.), Early Engagement and New Technologies: Opening up the Laboratory. Springer, pp. 15–34.


  17. Wiarda, M., Sobota, V.C.M., Janssen, M.J., Kaa, G. Van De, Yaghmaei, E., Doorn, N., 2023. Public participation in mission-oriented innovation projects. Technol. Forecast. Soc. Chang. 191, 122538. https://doi.org/10.1016/j.techfore.2023.122538


  18. Arnstein, S.R., 1969. A Ladder Of Citizen Participation. J. Am. Inst. Plann. 35, pp. 216–224.


  19. Rowe, G., Frewer, L.J., 2000. Public participation methods: A framework for evaluation. Sci. Technol. Hum. Values 25, 3–29. https://doi.org/10.1177/016224390002500101


  20. Stirling, A., 2008. “Opening up” and “closing down”: Power, participation, and pluralism in the social appraisal of technology. Science, Technology and Human Values 33, pp. 262–294. https://doi.org/10.1177/0162243907311265


  21. Fung, A., 2008. Democratizing the Policy Process. In R. E. Goodin, et al. (Eds), The Oxford Handbook of Public Policy, Oxford: Oxford University Press, pp. 681-682.


  22. See e.g., Eitzel, M., Cappadonna, J., Santos-Lang, C., Duerr, R.E., Virapongse, A. West, S.E., ... Jiang, Q., 2017. Citizen Science Terminology Matters: Exploring Key Terms. Citizen Science: Theory and Practice. pp. 1-20. https://doi.org/10.5334/cstp.96

  1. In this document, we use “stakeholder” as an umbrella term covering everyone who might be affected by, or might affect an R&I process. Due to the focus of PRO-Ethics, our perspective is framed by the endeavor to ethically engage “non-traditional” stakeholders.


  2. For critical discussions of the term “vulnerability” in the context of (participatory) research, see: Brown, K., Ecclestone, K., Emmel, N., 2017. The many faces of vulnerability. Soc. Policy Soc. 16, 497–510. https://doi.org/10.1017/S1474746416000610 and Aldridge, J., 2015. Participatory research: Working with vulnerable groups in research and practice. Policy Press. https://doi.org/10.2307/j.ctt1t8933q


  3. There is a diversity of participatory methods that could be employed in any given process. These should be chosen carefully, considering the intended goals of the process, the available resources, and the specificities of the stakeholder groups to be involved.


  4. Working with non-scientific participants in a scientific context entails a meeting of different frames of reference. In turn, it is important to understand the roles of R&I actors (such as researchers) and participants, including the scopes and limits of their responsibilities. In particular, it is important to address questions of research integrity and safeguard the quality of the scientific process while taking care not to exploit any involved actors.


  5. Most prominently, this includes the ALLEA European Code of Conduct for Research Integrity. The most current version of this living document can be accessed via ALLEA’s website: https://allea.org/code-of-conduct/


  6. Van de Poel, I. (2016). An Ethical Framework for Evaluating Experimental Technology. Science and Engineering Ethics 22, 667–686. https://doi.org/10.1007/s11948-015-9724-3.


  7. See e.g. Eitzel, M., Cappadonna, J., Santos-Lang, C., Duerr, R.E., Virapongse, A. West, S.E., ... Jiang, Q., 2017. Citizen Science Terminology Matters: Exploring Key Terms. Citizen Science: Theory and Practice. pp. 1-20. https://doi.org/10.5334/cstp.96


  8. In this category, the main boundaries for the “citizens” category are anchored in the citizens/stakeholders distinction.


  9. Ruzycki, S.M., Ahmed, S.B., 2022. Equity, diversity and inclusion are foundational research skills. Nature Human Behaviour 6, 910–912. https://doi.org/10.1038/s41562-022-01406-7


  10. Swierstra, T., 2017. Introduction to the Ethics of New and Emerging Science and Technology. In: R. Nakatsu et al. (eds.), Handbook of Digital Games and Entertainment Technologies, Springer, Dordrecht. https://www.doi.org/10.1007/978-981-4560-50-4_33


  11. For a closer look at the complexities of evaluating participatory processes – specifically in the context of citizen science – see Schaefer T., Kieslinger B., Brandt M., van den Bogaert V., 2021. Evaluation in Citizen Science: The Art of Tracing a Moving Target. In: Vohland K. et al. (eds) The Science of Citizen Science. Springer, Cham. https://doi.org/10.1007/978-3-030-58278-4_25


  12. Xu, F., Uszkoreit, H., Du, Y., Fan, W., Zhao, D., Zhu, J. (2019). Explainable AI: A Brief Survey on History, Research Areas, Approaches and Challenges. In: Tang, J., Kan, MY., Zhao, D., Li, S., Zan, H. (eds) Natural Language Processing and Chinese Computing. NLPCC 2019. Lecture Notes in Computer Science, vol 11839. Springer, Cham. https://doi.org/10.1007/978-3-030-32236-6_51


  13. Reddy, S. (2022). Explainability and artificial intelligence in medicine. The Lancet 4:4, e214-e215.


  14. Santoni de Sio F. and van den Hoven J. (2018) Meaningful Human Control over Autonomous Systems: A Philosophical Account. Frontiers in Robotics and AI 5:15. https://doi.org/10.3389/frobt.2018.00015.


  15. Steen, M. (2021). ‘Human-Centred Design and its Inherent Ethical Qualities’. In: The Routledge Handbook of the Philosophy of Engineering. D.P. Michelfelder and N. Doorn (eds). New York/Oxon, Routledge, pp. 328-341.


  16. Ullah, A., Q. Zhang and A. Mansoora (2021). The influence of intellectual property rights protection on contribution efforts of participants in online crowdsourcing contests, Computers in Human Behavior, 123: 106869, https://doi.org/10.1016/j.chb.2021.106869.
    .


  17. Allen, L., O’Connell, A. and Kiermer, V. (2019), How can we ensure visibility and diversity in research contributions? How the Contributor Role Taxonomy (CRediT) is helping the shift from authorship to contributorship. Learned Publishing, 32: 71-74. https://doi.org/10.1002/leap.1210.


  18. Braun R., Ravn T. et al. (2019) RE/RI expert set of indicators for e-database. ENRI Deliverable 6.2. ENRI Network.


  19. This is in line with the ISO 21500 definition of the term. See https://www.iso.org/standard/75704.html


  20. Purvis, B., Y. Mao, and D. Robinson (2019) “Three pillars of sustainability: in search of conceptual origins”. Sustainability Science 14, 681–695 (2019). https://doi.org/10.1007/s11625-018-0627-5.


  21. World Commission on Environment and Development (1987). Our Common Future. Oxford: Oxford University Press. ISBN: 019282080X.


  22. Carlo Bertot, J., P.T. Jaeger, and J.M. Grimes (2012), "Promoting transparency and accountability through ICTs, social media, and collaborative e‐government", Transforming Government: People, Process and Policy, 6(1): 78-91. https://doi.org/10.1108/17506161211214831.


  23. AI HLEG (2019). Ethics Guidelines for Trustworthy AI. High-Level Expert Group on Artificial Intelligence. https://digital-strategy.ec.europa.eu/en/library/ethics-guidelines-trustworthy-ai (date accessed: 16 November, 2023).


  24. Friedman, B., P.H. Kahn, A. Borning, and A. Huldtgren (2013). "Value Sensitive Design and Information Systems." In: Early engagement and new technologies: Opening up the laboratory, edited by N. Doorn, D. Schuurbiers, I. van de Poel and M.E. Gorman, 55-95. Dordrecht: Springer Netherlands.


  25. Van den Hoven, J., P.E. Vermaas, and I. Van de Poel, eds. (2015). Handbook of Ethics, Values, and Technological Design: Sources, Theory, Values and Application Domains. Dordrecht: Springer Netherlands

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