A long way to go for citizen involvement

Citizens and end-users are more underrepresented than expected in participatory processes, shows new PRO-Ethics report.

"We were surprised by the clear underrepresentation of citizens when it comes to the inclusion of non-traditional stakeholders in RFO activities," says Kalli Giannelos, researcher at SciencesPo in Paris.

Along with Bernard Reber, Research Director at the French National Centre for Scientific Research (CNRS)/Political Research Centre of Sciences Po Paris, and Neelke Doorn, Professor at TU Delft, she has led a study on the diversity of participatory approaches and ethical practices among Research Funding Organisations (RFOs), as part of PRO-Ethics. The findings of this study are presented in the report Mapping of current practices of RFOs in Europe, which has been drafted for the European Commission.

"All in all, the participation of non-traditional stakeholders does not seem to be particularly widespread: the survey results indicate that RFOs are mainly conducting expert-led processes, with citizens and end-users being distinctly underrepresented. This holds true when we look across all types of participatory processes that can be considered: They usually involve experts, research institutions and scientists. Having said that, even though underrepresented, citizens and end-users are growing categories in expected future RFO activities, which is arguably a sign of the perceived importance of their inclusion."

Kalli Giannelos says that these findings indicate a discrepancy between on the one side the discourse and policies promoting citizens participation and social impact priorities, and on the other side the actual means to develop such initiatives.

"In addition, it should be noted that these aggregative results are tempered by some sectoral heterogeneity: project evaluation and social impact measurement are two types of RFO activities that are more receptive to less represented types of participants, such as citizens and end-users."

A variety of practices and understandings

According to Kalli Giannelos, the data collected from RFOs reveal an important diversity of viewpoints and practices that point to more fundamental divides and conflicting ideas between the different participatory approaches, as well as with the applied ethics rules or ethics appraisals in the innovation programmes under scrutiny. More broadly, they also show profound differences on a more abstract level in how to approach the ethics in and of participation.

"In the absence of common practices or tendencies in evaluation procedures and in participatory processes — let alone the variety of approaches to ethics — it seems practically impossible to consider ethical practices of public funding structures at a general level, without putting into question the definitions and the ethical grounds", she says.

"The challenges and benefits of engaging citizens or stakeholders are diversely perceived, as well as the prevailing goals of participatory practices. The same applies to the identification of participants, with citizens or stakeholders as a main divide, as well as more granular variations, like who is to be included in the category "citizens". How participants are selected can also differ significantly."

A tentative taxonomy for participation

Such divides have guided the empirical data collection, as well as the criteria selection and the methodology used to display the results of this study. Data was collected through a survey of ten funding organisations from PRO-Ethics' consortium that combined quantitative and qualitative questions. In addition, individual interviews with each RFO provided some more contextual elements that helped to underline national specificities as well as distinctive features in the operational model of the RFOs.

"These discrepancies also include issues related to identification of participants, representation of participants, identification of the right process for participants’ involvement, adaptation of participative methods to the context, avoidance of biases in citizen selection, use of personal data, consideration of the asymmetric access to information for citizens, and also the fact that — interestingly enough — not all RFOs consider ethics as a meaningful component to the same extent," explains Kalli Giannelos.

"The focus on the qualitative dimension has offered a higher level of precision and has helped us shape a tentative taxonomy for participation, progressively developed over several months, in collaboration with RFOs and expert organisations from PRO-Ethics. Given the variety of understandings and approaches to ethics and to participation, this taxonomy is an essential step in the development of a methodology for participatory practices in research and innovation. It is an attempt to bridge the theoretical and empirical gaps that have been identified so far."

Ethics unevenly integrated in formalised evaluation procedures

Some ethical challenges or issues related to participatory approaches that are critical to RFOs have been examined more closely in the interviews following the survey.

As a second layer of analysis, eleven external experts on ethics and participation from different EU countries have been selected and interviewed in order to enrich the analysis and the overview at national and EU level on relevant legal, ethical and governance-related rules and conditions, as well as sectoral specificities.

"At a general level, this study has displayed surprising results in terms of structural, legal and ethical variations in RFO participatory practices," says Kalli Giannelos.

"Structurally, not all RFOs benefit from the same means and support from governmental or local authorities in the design of their activities and implementation of their funding programmes. Legally speaking, national laws are introducing specificities in addition to compliance with European laws. Additionally, not all RFOs allocate the same importance to ethics and ethics procedures."

She relates this last aspect to the surprisingly uneven development of formalised evaluation procedures in publicly funded research and innovation across Europe.

"Some RFOs and experts do not endorse standard ethics procedures in evaluation, unless they are a compulsory component, as part of EU funding. This indicates the need for enhanced dialogue and cooperation at EU level in order to tackle the diversity of procedures. At the same time, questions arise as to how to achieve a high standard, taking into account national contexts and sectoral specificities."

She continues: "If the same standard of ethics reviews is adopted across countries and sectors, it can be timesaving for basic ethical dilemmas, avoiding discussion that unnecessarily hinders action. But our study also revealed that ethics cannot be limited to a standardised ethics procedure. There is often the need for an additional ethical deliberation. Our expert interviews were quite divisive regarding the adoption of a common ethics review, both in terms of implementation but also in view of other concerns that exceed its goals."

Confusion and lack of recognition around participation

Through the expert interviews, the report also reveals that participation is not always recognised enough as an added value. Sometimes there is a confusion between arm’s length consultations and genuine participation by all parties, where their views are actually included in the decision-making process. The selection of participants is another element in need of guidance and improvement, since random selection is not always suitable for qualitative inputs, and biases are still quite often occurring in selection processes. Also, differentiating individuals, as citizens or end-users, from civil society organisations, is an important element that has been brought forward by an expert.

So, what could then be the most important learnings for PRO-Ethics' work to develop an ethical framework for participation? Kalli Giannelos thinks the number of diverging views and specificities indicate that the framework should aim at a compromise:

"It seems important to avoid over-regulation and to consider separately specific concerns in some sectors. Based on this report’s conclusions, perhaps the backbone of a comprehensive framework could be a combination of general guidelines regarding ethics and usual dilemmas, with stabilised taxonomies of participation, and a list of questions to address in order to ensure the efficiency of guidelines across all contexts."

"The future framework will provide general guidance and give the RFOs insight into how to manoeuvre in specific cases, without contradicting sectoral needs and without stigmatising," she continues.

An ethical framework must tackle diversity

Kalli Giannelos underlines that the involvement of new actors follows the Responsible Research and Innovation (RRI) principles, but, as both the data and the experts of this report highlighted, RFO practices form a complex and messy landscape difficult to be framed and mapped out. It is a challenging task to import in RRI all the quality criteria for participation that could be meaningful across all countries and sectors, to define the purpose of participation and its means, and also to make the distinction between ethics and legal compliance, leaving space for ethical interpretation and reflection.

"Our ambition with the PRO-Ethics project is to tackle the diversity of organisational contexts, so that RFOs can benefit from some tools and methodological guidance on ethics and participatory processes. Bernard Reber, Neelke Doorn and I are currently working on that," she concludes.

Interview by Anne Winsnes Rødland
Illustration photo: PRO-Ethics/Plot

Published 02.12.2020

PRO-Ethics colleagues would like to warmly thank the following experts for their contribution (interviews) in the context of this PRO-Ethics Report:

Ms Anne-Marie Ducroux, Chair of the Environment Section at the French Economic, Social and Environmental Council (CESE); independent consultant in CSR, sustainable development and stakeholders dialogue

Mr Dr Vidar Enebakk, Director for The Norwegian National Research Ethics Committee for the Social Sciences and the Humanities

Ms Dr Maura Hiney, Head of Post-Award, Evaluation and Policy at the Health Research Board Ireland; member of ALLEA Permanent Working Group on Science and Ethics

Mr Lars Klüver, Director of the Danish Board of Technology Foundation

Ms Emer. Prof Dr Ilse Kryspin-Exner, Professor emerita of Clinical and Health Psychology, University of Vienna

Mr Ass. Prof Dr Mircea Leabu, Cell biologist, at Victor Babeş National Institute of Pathology, Bucharest

Mr Prof Dr Arne Manzeschke, Professor in Anthropology and Ethics for Health Professionals, Lutherian University of Applied Science, Nuremberg; President of Societas Ethica (European Society for Research in Ethics)

Ms Prof Dr Ana Marušić, Professor of Anatomy and Chair of the Department of Research in Biomedicine and Health at the University of Split School of Medicine, Split, Croatia

Ms Silvia Salinas Mulder, President of the International Organisation for Cooperation in Evaluation (IOCE); Senior consultant in the social development sector

Mr Tom Saunders, Head of Public Engagement at UK Research and Innovation (UKRI)

Ms Dr Loreta Tauginiene, Ombudswoman for academic ethics & procedures, Office of the Ombudsperson for Academic Ethics and Procedures, Lithuania