Ethics Framework and Guidelines:
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 »
Preamble
This framework supports the ethical preparation, implementation, and evaluation of participatory processes in research funding and (applied) research & innovation (R&I).
It is intended to help the user understand the context within which they undertake participatory activities and guides them through mapping and addressing ethical challenges and limitations that might arise in the process.
The framework has been developed with a focus on the activities of research funding organizations (RFOs), including participation in strategy development and agenda setting, call topic definition and formulation, (project and proposal) evaluation processes, and R&I projects.
It addresses different contexts, resources, and (stakeholder) needs that impact decision making to ensure that participatory processes are carried out in an ethical manner. It also provides guidance to implement stakeholder participation while upholding principles of fairness, transparency, equality, privacy, and sustainability. Our guidelines have been set up to support ethics review and evaluation procedures that assess the planning and implementation of participatory processes and provide a frame of reference for stakeholders to discuss and understand participation in R&I.
There is a strong push to open up R&I processes to broader audiences, in order to achieve several aims, including: promoting inclusion; raising the effectiveness, validity and applicability of (scientific) interventions; creating a better and/or wider evidence-base for policy and decision making; and to more closely align R&I processes with societal needs.
This should, in turn, enable R&I to better address highly complex, uncertain, and contested societal challenges that depend on collaborations between science, technology, society, and policy1. In this context, RFOs play a crucial role. Operating at a regional, national, international and global level, they are responsible for setting R&I agendas and framing topics addressed in calls. They also codetermine the scope, content, direction, outputs and potential impacts of research2.
However, engagement of societal groups in the processes of RFOs, and R&I in a broader sense, can be challenging. Questions we must ask when preparing and implementing stakeholder participation include: What kinds of processes should stakeholders be involved in and how? How do we enable and empower participants to make decisions? How do we choose the right participants and the right processes? How can biases be managed and mitigated? How do we need to care for participants during their involvement? How do we ensure the privacy rights of participants? And how can activities be carried out in line with basic principles and values of research ethics and integrity?
The aim of the ethics framework is to ensure that participation is meaningful for participants and organizations, to inspire and guide the preparation, implementation, and evaluation of ethical participation, and to increase support for stakeholder participation in R&I. As such, it is a tool for safeguarding the effectiveness, ethics, and justification of stakeholder participation.
This framework is the main output of the EU-funded PRO-Ethics project. Contents were developed through an iterative process, building on insights from current literature as well as data primarily collected from 10 pilot projects, which were implemented in two phases. Four of these took place at the beginning of the project, providing experiential inputs to the development of the first draft of the framework and guidelines. During the six pilots of phase II, the draft framework was tested and improved upon. Each pilot project focused on engaging “non-traditional” stakeholders in the processes of RFOs, which entails stakeholders who are not usually involved in such activities. For PRO-Ethics, this included citizens in the broadest sense, residents of an area, end-users of a technology, people affected by a specific issue, and beneficiaries of funding calls.
Feedback was also gathered from civil society, researchers, citizen science practitioners, research funding organizations, research ethics committees, research integrity organizations, and others involved in the preparation, implementation, and evaluation of participatory processes. Feedback was obtained through surveys, workshops, open consultation, direct commentary and in co-creative efforts.
PRO-Ethics was a four-year Horizon 2020 project with the objective of creating and testing an ethics framework, guidelines and examples of best practice to help organizations engage stakeholders, while respecting principles of fairness, transparency, equality, privacy, and sustainability. PRO-Ethics used an iterative process with learning loops between eight participating RFOs, five expert partners and two international organizations. While PRO-Ethics had a Pan-European outlook, it incorporated and compared local conditions and other specific and cultural characteristics of the partnering RFOs from Austria, the Czech Republic, Germany, Lithuania, Norway, Romania, Spain, and the Brussels Capital Region, which implemented the PRO-Ethics pilots.
The consortium was made up of ZSI (project coordinator), DBT, TU Delft, Sciences Po, Nesta, Eureka, EUREC Office, Innoviris, RCN, CDTI, FFG, VDI/VDE-IT, UEFISCDI and RCL. TA CR was initially a part of the consortium but had to discontinue its involvement after two years. LBG OIS Center was subsequently involved in the project through funding distributed via an open call.
These framework and guidelines were developed with valuable input from project partners CDTI, FFG, Innoviris, RCN, RCL, TA CR, UEFISCDI, VDI/VDE-IT, and associated partner LBG OIS Center. These organizations implemented pilot projects from which evidence was drawn and in which the framework and guidelines were tested and refined in an iterative manner.
Similarly, numerous experts in various fields – including citizen science practitioners, representatives from research ethics committees and research integrity organizations, and other research funding organizations outside our consortium – participated in our interactive activities to give feedback, and identify gaps and potential areas of use for the framework. The members of our advisory board – Margaret Gold, Krista Varantola, Angela Wroblewski and Sanna-Kaisa Spoof – played a key role in supporting the pilots and reviewing the framework and guidelines at various stages of the process. We would also like to thank the many stakeholders, including citizens, end-users, and project beneficiaries, who took part as participants in our pilots and provided valuable feedback.
We are thankful to the European Commission for funding the PRO-Ethics project and providing expert commentary. This enabled the work done within the project and was essential to the development of the ethics framework and guidelines. Special mention must go to Lisa Diependaele, Dorian Karatzas, Mihalis Kritikos, and Roberta Monachello, whose support helped us realize our work.
This report was designed by Sciad Communications Ltd.
CDTI Centre for the Development of Industrial Technology (Spain)
DBT Danish Board of Technology (Denmark)
EUREC Office European Network of Research Ethics Committees
(Germany, Europe)
EUREKA Intergovernmental organisation for research and development funding and coordination (Belgium, International)
FFG Austrian Research Promotion Agency (Austria)
InnovirisInstitute for the promotion of research and innovation in
Brussels capital region (Brussels, Belgium)
LBG OIS Center Ludwig Boltzmann Society – Open Innovation in Science Center (Austria)
Nestaformerly NESTA, National Endowment for Science, Technology and the Arts (UK)
RCL Research Council of Lithuania (Lithuania)
RCN Research Council of Norway (Norway)
Sciences PoParis Institute of Political Studies (France)
TA CR Technology Agency of the Czech Republic (Czech Republic)
TU Delft Technical University Delft (The Netherlands)
UEFISCDI Executive Agency for Higher Education, Research and
Innovation Funding (Romania)
VDE Association for Electrical, Electronic and Information Technologies (Germany)
VDIV Association of German Engineers (Germany)
VDI/VDE-IT VDI/VDE – Innovation + Technology (Germany)
ZSI Center for Social Innovation (Austria)