Section: Research Policy & Development

This report constitutes the Deliverable 2.3, Report on Informed Consent Procedure Requirements and Challenges. Innovative Moments of Informed Consent in Practice for Work Package 2 (Project CoAct), 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 Citizen Social Science and their Informed Consent (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.

Cite as

Authors: Mayer, K., Malik, Mariam, Wintersteller, Teresa, Bonhoure, Isabelle, Arza, Valeria, Actis, Guillermina, Wöhrer, Veronika, Perelló, Josep, Danz, Shenja Vasanthi Kumari

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Tags: citizen science, citizen social science, ethics, evaluation, informed consent