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Project deliverable Open Access

CoActD2.3: Report on Informed Consent Procedure Requirements and Challenges

Malik, Mariam; Wintersteller, Teresa; Bonhoure, Isabelle; Arza, Valeria; Actis, Guillermina; Mayer, Katja; Wöhrer, Veronika; Perelló, Josep; Danz, Shenja Vasanthi Kumari

DISCLAIMER: The present Project Deliverable has been submitted to the European Commission for review. The information and views set out in this report are those of the author(s) and do not necessarily reflect the official opinion of the European Union. Neither the European Union institutions and bodies nor any person acting on their behalf may be held responsible for the use which may be made of the information contained therein.



In CoAct (Co-Designing Citizen Social Science for Collective Action), the Research and Innovation Actions (RIA) on mental health, youth employment, and environmental justice engage with co-researchers (CoRes) in the research process who are directly affected by social concerns. By employing a participatory approach, the project demonstrates the scientific relevance of co-designed knowledge production. CoAct not only contributes to the citizen social science (CSS) approach, but to ongoing discussions on how to implement informed consent (IC) in CSS projects by highlighting specific challenges and reflecting on innovative moments from the research practice.

This report constitutes the Deliverable 2.3, Report on Informed Consent Procedure Requirements and ChallengesInnovative Moments of Informed Consent in Practice for Work Package 2 (WP2), and describes continuing discussions about how regulations like the General Data Protection Regulation 2016/679 (GDPR, European Commission, 2018b) and other research-guiding principles impact CSS and their IC practices. By recognising IC as a nexus of legal requirements, research ethics, and research practice, we go beyond ‘formalised informed consent,’ which is a legal agreement governed by the GDPR, among others, and acknowledge its ethical dimensions. This report uses relational understandings to depict ethical dimensions of IC, and alternative approaches as to how it can be conceptualised. This is closely linked to a processual understanding, which requires incorporating scientific responsibility and accountability into its social contexts and in recognition of power imbalances that shape research and IC practices. Moreover, acknowledging that IC is an individual and autonomous decision, but also a relational and socially embedded practice, can sharpen how ethically relevant moments of obtaining and/or refusing consent are perceived. Community-based concepts of consent highlight scientific responsibility towards individuals as well as communities in terms of, for example, representation and demonstrate the broader importance of social responsibility outside of the specific project.

The report’s primary objective is to combine theoretical discussions in the fields of IC and research ethics with participatory approaches and to provide insight about challenges and best practices in CSS research cycles. In that sense, we aim to establish a reflexive space to explore the ethical dimensions of IC within CSS. The report concludes with our policy proposals for researchers that serve as guidelines for conceptualising consent as a social endeavour.

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