Abstract
This article examines the ethical complexities of informed consent (IC) in participatory research, arguing that standardized, legalistic approaches fail to address the dynamic, relational nature of collaborative knowledge production. Drawing on experiences from the international participatory project CoAct conducted in Europe and Argentina, we explore how rigid IC frameworks, shaped by biomedical ethics, GDPR, and IRB resp. REC requirements often clash with the evolving needs of co-researchers and communities. We distinguish between formalized IC as a legal safeguard and IC as an ethical, processual practice embedded in ongoing researcher-participant relationships. Through empirical examples and reflexive practices, we highlight how participant diversity, power imbalances, and context-specific risks challenge conventional IC models. In response, we show how our equity-promoting, flexible, and inclusive consent practices were tailored to participants’ varying capacities, literacies, and vulnerabilities, and how we reframed IC as living ethical commitment grounded in care, mutual responsibility, and collective decision-making. We outline the limitations we faced and conclude with four key measures - dynamic consent processes, accessibility, reflexivity, and community orientation - as practical steps for improving IC in participatory research. This contribution advances the conversation on ethical research by demonstrating how IC serves as a key site of negotiation between institutional constraints and the principles of justice, trust, and co-creation.
Keywords
1. Introduction
This special issue provides an opportunity to reflect on the role of informed consent (IC) in participatory research across diverse cultural contexts. While often seen as a bureaucratic formality, IC is crucial in shaping the relationship between researchers and co-researchers. It is frequently the only moment where commitments, responsibilities, and mutual benefits are explicitly articulated. When approached from a participatory angle, IC is not merely a requirement but a space where research ethics become negotiable, fostering trust, clarifying expectations, and establishing a shared sense of purpose.
However, this understanding of IC contrasts sharply with the standardized, linear approach imposed by research policy and institutional procedures. Within European research policy, IC has become an essential component of social science research, shaped by regulations such as the EU’s General Data Protection Regulation (GDPR), Responsible Research and Innovation (RRI) principles, and ethics committee requirements. These frameworks position IC as a prerequisite for entering the field, influencing how it is perceived and applied. Simultaneously, the push for open science and data-sharing mandates by funding bodies worldwide, alongside stringent data protection laws, necessitates new approaches to balance transparency, privacy, and fairness.
The challenges and opportunities of IC in qualitative and participatory research have been widely discussed (Caeymaex et al., 2023; Duchesne & Ferry, 2021; Ellis & Earley, 2006; Gefenas et al., 2021; Suman & Pierce, 2018). We contribute to this discussion by sharing insights from our research in the project Co-designing Citizen Social Science for Collective Action (CoAct), in which we broadly discussed IC procedures in Europe and Argentina. We adopted an inclusive and participatory approach, engaging community members as partners in knowledge creation. With this approach we aimed to democratize social sciences by involving those most affected by the issues under study. We also sought to empower communities by directly involving them in research to foster social change. CoAct was designed to integrate scientific rigor with lived expertise, generating insights that are both academically robust and socially relevant.
IC is a central concern for Institutional Review Boards (IRBs) or Research Ethics Committees (RECs) 1 , often determining the approval or rejection of proposals. Yet, IRB and REC perspectives on IC are primarily shaped by biomedical research (Caeymaex et al., 2023) and a formalized, contractual understanding of consent (Fassin, 2006). Conventional research ethics frameworks - particularly IRBs/RECs and standard IC protocols - were designed for traditional researcher-subject relationships and often struggle to accommodate the fluid and collaborative nature of participatory research (Onakomaiya et al., 2023). In participatory research, IC is not a one-time agreement but an ongoing negotiation, requiring continuous dialogue and adaptation. Co-researchers often contribute personal, sensitive data, necessitating ethical considerations beyond standard compliance measures. The iterative nature of IC introduces challenges, including power imbalances, the limitations of rigid consent protocols, and the need for culturally responsive, collaborative approaches. Researchers must deal with these complexities while ensuring that participants have agency, data literacy, and decision-making capacity, making ethical compliance both essential and dynamic in order to live up to the promises of participatory research made to the participants (Eleta et al., 2019).
Our paper examines the challenges encountered in IC procedures within participatory research and presents strategies to address them. We ask: How can IC be designed as an iterative and ethically responsive process that aligns legal compliance with the evolving nature of participatory research while empowering its participants?
With our contribution we show how informed consent procedures serve as key sites where power dynamics in research relationships become visible, revealing tensions between researchers and participants, the institutional constraints of IRBs resp. RECs, and the ethical imperatives of community engagement. We begin by tracing the historical development of IC and its establishment as a cornerstone of research ethics. Drawing on our experiences, we then explore the ethical complexities of IC in projects relying on active community involvement and propose measures to strengthen IC practices in qualitative research. We distinguish between formalized informed consent - IC as a legal agreement for data processing under GDPR - and informed consent as an ethical practice embedded in participatory research. Advocating a processual approach, we argue that IC should extend beyond the initial project phase, evolving in response to ethical questions and challenges that emerge throughout the research process. By continuously reflecting, adapting, and documenting IC practices, researchers can enhance participant engagement, transparency, and trust. Furthermore, we introduce the concept of “differential data equity”, which acknowledges participants’ varying capacities to understand and manage data and promote a differential perspective to equity in participatory research more generally, as this concept offers adaptable strategies for more inclusive and ethically responsible and responsive IC practices. We discuss broader implications for participatory settings that seek to engage diverse communities responsibly and ethically. We conclude by addressing four key measures to enhance the understanding of the needs at the intersection of ethics and participatory research.
2. Informed Consent in Context: From its Foundations to its Critique
Informed consent today is shaped by historical, ethical, and legal developments. In this section we explore how these domains converge and interact.
2.1. Definition and Ethical Foundations
Research ethics, broadly defined, is a set of principles and guidelines that ensure research is conducted responsibly, transparently, and with respect for all participants (Brydon-Miller & Banks, 2019). While specific frameworks vary across disciplines and geopolitical contexts, they share a common goal: to protect the dignity, rights, and well-being of individuals and communities involved in research. Ethical research also fosters integrity, accountability, and trust in the research process. Key considerations include voluntary participation, informed consent, confidentiality, avoidance of harm, and the responsible management of data.
Informed Consent refers to the process by which individuals voluntarily agree to participate in research after being fully informed about its purpose, methods, potential risks, and benefits (Xu et al., 2020). It is both an ethical principle and a legal requirement, designed to uphold autonomy, privacy, and transparency in research. At its core, IC ensures that participation is free from coercion, based on adequate understanding, and allows participants to make decisions in alignment with their rights and interests.
IC has evolved into a cornerstone of research ethics, and has been established as a mandatory prerequisite before research can begin, requiring that participants willingly consent to their involvement with full awareness of their roles and potential risks. Institutional ethics committees or review boards place IC assessment at the center of their activities, ensuring that studies meet ethical standards and comply with legal requirements. Under the General Data Protection Regulation (GDPR) in Europe, IC must include explicit consent for data use, particularly when handling sensitive personal data (Krügel, 2019).
The prevailing understanding of IC is largely shaped by Anglo-American traditions (Hostiuc, 2018). However, its application in qualitative and participatory research - where researcher-participant relationships are often dynamic and research questions evolve - requires greater flexibility and reflexivity (Caeymaex et al., 2023; Crow et al., 2006; Duchesne & Ferry, 2021; Gefenas et al., 2021; Miller & Bell, 2002; Newman et al., 2021; Suman & Pierce, 2018). Recent discussions have also explored the implications of GDPR for qualitative and participatory research, where strict data protection requirements sometimes conflict with the principles of openness, collaboration, and iterative knowledge production central to these methodologies (Cant, 2020; Suman & Pierce, 2018).
Additionally, contemporary frameworks such as Responsible Research and Innovation (RRI) advocate for aligning research with societal values and needs, while participatory approaches like Citizen Science emphasize inclusivity, reflexivity, and active public engagement in tackling socially relevant issues (Tauginienė et al., 2024). Open Science principles further promote accessibility, reproducibility, and reusability of scientific knowledge, reinforcing democratic and responsible knowledge production (Lindemann & Häberlein, 2023). Within this landscape, IC must be understood not only as a legal safeguard but as a dynamic, ethical practice - one that balances protection with participation, compliance with inclusivity, and structure with flexibility. Furthermore, IC is not merely a legal document, it is a communicative process embedded within varying degrees of formalized ethical procedures and discussions.
2.2. The History of Informed Consent
The concept of informed consent has its origins in the Nuremberg Code in 1947 (Shuster, 1998), which established voluntary participation and informed decision-making as fundamental ethical principles in response to the atrocities of Nazi medical experiments (Miller & Boulton, 2007; Weindling, 2001). Subsequent legal and ethical developments reinforced these principles, including the Salgo v. Leland Stanford Jr. University Board of Trustees case (Salgo v Leland, 1957), which mandated that participants receive adequate information to make informed choices (Hostiuc, 2018). The Declaration of Helsinki from 1964 and the Belmont Report from 1979 further institutionalized IC as a cornerstone of research ethics, emphasizing voluntary consent, beneficence, and respect for autonomy (Nijhawan et al., 2013; Resnik, 2019).
While these frameworks primarily shaped medical research, ethical considerations for the social sciences emerged more gradually. The Tuskegee Syphilis Study (1932-1972) became a defining case of ethical misconduct, exposing the exploitation of marginalized communities when Black men were deliberately misled and denied treatment (Brandt, 1978). This scandal underscored not only the importance of IC but also the structural inequalities that research ethics had historically neglected (Brall et al., 2017; King, 1998). Contemporary research ethics increasingly recognizes power imbalances related to race, class, gender, age, and disability, pushing for more inclusive and context-sensitive IC practices.
By the early 2000s, as RECs became more institutionalized in Europe, formalized IC procedures extended to the social sciences (Caeymaex et al., 2023). However, IC in these disciplines largely followed biomedical models, often prioritizing legal compliance over the relational and process-oriented nature of qualitative and participatory research. Standardized consent forms - designed for controlled experimental settings - struggled to accommodate the evolving, collaborative dynamics of participatory methodologies. In response, critical scholars in the social sciences and humanities have advocated for more flexible, reflexive IC practices that acknowledge power relations, iterative ethical considerations, and the situated nature of knowledge production.
2.3. Critique of Informed Consent
Key Critiques of Traditional IC Approaches
A key critique is that IC is grounded in a liberal framework that prioritizes individual autonomy. This approach, rooted in Enlightenment ideals, frames IC as a means of respecting participants’ rights to self-determination through full disclosure, understanding, voluntariness, and the formal authorization of participation (Beauchamp, 2010; Sutrop & Lõuk, 2020).
While these principles safeguard individual rights, they have been challenged for two main reasons. • Neglect of collective and relational values: In many research contexts, particularly in the social sciences, reciprocity, solidarity, and community-based decision-making play an essential role (Lomelino, 2015). Yet, standard IC models often fail to account for these relational dimensions. • Assumption that full disclosure leads to full understanding: Providing detailed information does not automatically ensure that participants grasp the research’s implications, especially in contexts marked by structural inequalities, varying literacy levels, or cultural differences in decision-making processes.
Below, we outline key critiques of traditional IC approaches and present alternative approaches that respond to these challenges.
In sum, critiques and alternative visions of IC emphasize that consent procedures must account for social relationships, ongoing adaptation, and power imbalances. Recognizing the overlapping critiques of IC - we developed an approach that treats IC as a flexible, iterative, and context-sensitive process. Even though participatory approaches that engage participants as co-researchers, address some of the concerns mentioned above, they, too, necessitate continuous ethical reflection and negotiation within research teams. In essence, the burden shifts towards a processual view of consent - closer to a continuous, informed participation - rather than a single act. As we will demonstrate in the next section, our approach tried to transform IC into an ongoing process of negotiation, collective decision-making, researcher reflexivity, and multimodal consent tools to accommodate diverse needs. By gaining a clearer understanding of legal requirements, we were able to limit data collection to the essentials, ensuring both compliance and stronger protection of participants’ privacy while reducing legal risks. Balancing legal obligations with ethical responsiveness allowed us to foster trust, transparency, and genuine participant agency in participatory research.
3. Our Approach to IC and its Challenges
CoAct was an international research project (2020-2022) that engaged citizens as co-researchers in participatory social science research across Argentina, Austria, Bulgaria, Germany, Greece, and Spain. Addressing topics such as mental health, youth employment, environmental justice, and gender equality, CoAct sought to democratize research by positioning participants as equal partners in shaping both research questions and outcomes (Malik, Wintersteller, Bonhoure et al., 2021). The broader research team consisted of persons of different gender, academic status, disciplinary affiliation, race, ethnicity, sexuality and class backgrounds, some of them based at universities others at local NGOs. The authors of this text are social scientists of different academic status, ethnic and class backgrounds, working at universities resp. research institutions, having different amounts of experience with participatory approaches and are all at some point inspired by feminist, queer and post-colonial approaches.
Between May 2020 and July 2021, the research team organized internal capacity-building sessions to address the challenges of IC in participatory research. Recognizing the limitations of institutional support - such as university ethics committees and data protection offices - the sessions provided a collaborative space to discuss practical solutions, including simplifying consent forms, using plain language, and adopting flexible, digital approaches beyond standard documentation.
A key focus was the ethical complexity of participatory research, where power imbalances and evolving relationships require more adaptable IC practices. In our approach, we distinguished explicitly between formalized informed consent - a legal agreement for data processing governed by regulations such as the European GDPR (Duchesne & Ferry, 2021; Suman & Pierce, 2018) - and informed consent as an ethical process, embedded within relational and participatory research contexts (Malik, Wintersteller, & Wöhrer, 2021; von Unger et al., 2016).To support this, the team introduced Reflection Sheets, a tool to document ethically significant moments and adjustments throughout the research cycle. Inspired by process-based ethics (Guillemin & Gillam, 2004) and ethics of care (Gilligan, 1982), these sheets encouraged ongoing critical reflection, ensuring IC remained responsive, trust-based, and ethically rigorous across all project stages. This approach informed the systematic analysis of IC challenges presented in this article. In this section, we outline the key challenges faced in implementing IC across CoAct’s subprojects and describe the adaptive strategies developed to address them.
3.1. Empirical Examples of IC Adaptations in CoAct
3.1.1. IC in Participatory Mental Health Research
The participatory subproject based at the University of Barcelona focused on exploring social support networks for individuals with lived experiences in mental health. Given the sensitive nature of this topic, informed consent had to be carefully adapted to create a safe and trust-based environment. To ensure participants fully understood their rights and roles, the research team implemented a gradual consent process rather than requiring immediate formal agreement. Initial engagement sessions introduced IC in stages, allowing participants to ask questions, reflect, and discuss concerns before formalizing their participation in the project. Additionally, facilitators with expertise in mental health provided accessible explanations of research risks, data protection, and participant rights using plain language.
A key challenge was ensuring confidentiality and participant comfort in data collection. To address this, a chatbot built on an widely used anonymous digital messenger for mobile phones (Telegram) was introduced, where co-researchers could contribute insights without disclosing their identities. The IC process was embedded within this tool, using clear introductory messages instead of formal paperwork (Figure 1). Illustrations of IC related content from the Chatbot promotional video (Malik, Wintersteller, Bonhoure et al., 2021, p. 46)
Participants appreciated this low-barrier approach, as it allowed them to engage on their own terms without feeling exposed or pressured. The staged, multimodal IC approach ensured that consent was an ongoing conversation rather than a one-time agreement. Feedback from participants highlighted that this trust-building process made them feel more respected and included in the research. In terms of processual ethics, in this approach we drew on hybrid consent models (Moore et al., 2018) and visual/verbal methods for inclusive engagement (Lie & Witteveen, 2017).
The positive feedback from participants in such a sensitive research area fostered our insight that IC should be flexible, participant-driven, and integrated into the research workflow rather than imposed as a rigid formality (Malik, Wintersteller, Bonhoure et al., 2021). Altogether, the anonymity offered by the chatbot had mixed implications: while it helped reduce feelings of vulnerability, it also influenced how directly participants could shape the interpretation of their contributions. The staged consent approach further showed that confidence with digital tools varied, affecting how actively individuals engaged at different stages. These nuances highlight that efforts to make consent more inclusive can also produce new forms of uneven participation. Rather than contradicting the inclusive aims of the adapted consent process, these mixed implications point to the limits and trade-offs inherent in reconfiguring consent under sensitive and digitally mediated conditions.
3.1.2. Informed Consent in Participatory Youth Research
The participatory research initiative based at the University of Vienna focused on youth employment challenges. It required adaptations to standard informed consent procedures, as the traditional legalistic approach proved ineffective for engaging young participants with precarious educational pathways. Many struggled with complex legal terms and found standard consent forms alienating. To make IC more accessible, the research team embedded the formal consent process within the research process itself and invested substantial time in individually explaining and discussing consent with each participant.
This was not done at the initial encounter but introduced after an initial familiarization phase during the project weeks, allowing participants time to get to know the researchers, the project aims, and each other, and to develop a sense of belonging. Rather than presenting IC as a bureaucratic requirement, it was introduced as a step-by-step interactive process using visual and digital tools.
One particular adaptation in this case, that was developed due to COVID-19 restrictions, was the use of a mobile application that gamified consent. Through interactive quizzes and polls, young participants learned about data privacy, anonymization, and their rights in an engaging format. Icons and plain-language explanations were used to simplify complex terms, ensuring comprehension regardless of literacy level. Processual ethics were considered here in terms of doing the IC more inclusively (Wittich et al., 2023) using verbal and visual explanations (Lie & Witteveen, 2017) and do it in a slow step-by-step process (Malik, Wintersteller, & Wöhrer, 2021), partly including digital models (Moore et al., 2018).
This approach aimed to transform IC from a passive agreement into an active learning process aligned with participants’ communication styles (Malik, Wintersteller, Bonhoure et al., 2021). At the same time, it also revealed important tensions: while many young participants enjoyed the gamified format and engaged positively with it, such approaches risk simplifying complex ethical decisions, potentially framing consent as a task or even a quiz to be completed rather than as an ongoing negotiation that participants can meaningfully appropriate (Figure 2). Illustration from presentation and screenshot from mobile quiz in the app “Actionbound”, illustrating the learning experience and the digital skills aspect. Translation: What do you have to be careful of when you take pictures of others (for our research purpose)? (Two answers are correct here) ▪ I always have to ask for permission. ▪ People’s faces must not be identifiable. ▪ I can take pictures of everyone unless they notice it. ▪ I am only allowed to take pictures of myself (Malik, Wintersteller, Bonhoure et al., 2021, p. 63)
3.1.3. Informed Consent in Environmental Justice Research
In the participatory study on environmental justice based at Universidad Nacional de San Martín in Buenos Aires, informed consent posed unique challenges due to a combination of factors: low literacy levels, limited digital access, and legal distrust among participants. Some had been politically active and feared legal repercussions, while others, having engaged in advocacy for years without seeing change, expressed frustration and scepticism toward NGOs and political processes. Besides, an ethics committee for social sciences did not exist so far and a regulation comparable to the GDPR was not in place. So, there was no experience with this procedure even for those co-researchers who had been working with academic researchers before. The research team recognized that a standardized, paper-based consent form would not only create unnecessary barriers but also risk alienating key voices from the project (Figure 3). Excerpt from the video presentation (Malik, Wintersteller, Bonhoure et al., 2021, p. 74)
To address this, the IC was adapted into a flexible, participant-centred process. Instead of relying solely on written documents, the team developed a short explanatory video, which replaced legal jargon with visuals and oral explanations to make consent clear and accessible. For digital participation, the researchers introduced an online consent form that allowed participants to review and confirm their consent asynchronously. However, recognizing that not all participants had internet access, the team also implemented alternative consent mechanisms, such as oral consent via voice messages. This low-tech solution allowed participants to provide consent in a way that felt natural and accessible to them. By integrating multiple consent formats, the project ensured that IC was inclusive rather than exclusionary.
Participants expressed appreciation for having control over how they provided consent, reinforcing the importance of context-sensitive, community-based approaches to ethical research (Malik, Wintersteller, Bonhoure et al., 2021). Several aspects of processual ethics were considered in this subproject: The IC process recognized social and community influences (Sutrop & Lõuk, 2020) while assessing risks posed by formal documentation itself (Caeymaex et al., 2023). Accordingly, consent was adapted through verbal and visual explanations (Lie & Witteveen, 2017), inclusive formats (Wittich et al., 2023), and digital alternatives (Moore et al., 2018). However, we are aware that, relying on a mix of oral, visual, and asynchronous consent formats may, in other contexts, complicate collective decision-making and the long-term governance of shared data. Participants’ preference for less formal documentation can reduce risk exposure but may also increase reliance on personal trust, which can shift over time. These considerations suggest that relational forms of consent do not eliminate power asymmetries but may instead redirect where ethical negotiations take place.
3.2. Tackling the Challenges
Within our participatory framework, IC was not treated as a formality but as a social contract, defining rights, responsibilities, and expectations between researchers and co-researchers. Beyond legal compliance, our IC processes aimed to foster transparency, trust, and ethical collaboration, ensuring that participants understood both the benefits and commitments involved. To achieve this, IC was integrated into an ongoing, dialogical process, allowing space for questions, clarifications, and renegotiations rather than being a one-time event.
Challenges in Informed Consent and Adaptive Solutions Applied in the Project CoAct
As our examples show, balancing legal requirements, participatory ideals, and the practical challenges of diverse research settings proved complex. The following table categorizes these, and other major informed consent challenges encountered in CoAct and summarizes the adaptive solutions applied in response.
It was of utmost importance to the team that everyone involved understood that informed consent aims to establish a foundation of mutual respect and transparency, making all participants aware of both the protections in place for their participation and the commitments they are taking on. The IC process was carefully structured to highlight the tangible benefits of participation, such as the opportunity to contribute meaningfully to research that impacts their community, as well as access to new skills, insights, or knowledge - e.g. by attending training for citizen social science co-research activities. Importantly, the IC moment was designed not as a one-sided communication but as an open dialogue, where questions, clarifications, and even negotiations could occur. In the following section, we draw on these experiences to develop a more systematic framework - Differential Data Equity - for understanding and addressing these challenges.
4. Discussion
4.1. Limitations
While our approach was designed to ensure that co-researchers felt empowered to express their concerns or preferences - particularly regarding data use, privacy, and the extent of their involvement - we could not appropriately tackle all the challenges encountered. Despite our efforts to design an IC process that was adaptive, participatory, and context-sensitive, we encountered several limitations and institutional barriers within the project CoAct. These challenges, however, were not uniform across contexts: In two countries, negotiations with RECs were particularly difficult, as existing procedures rigidly enforced pre-approved consent formats that did not account for the evolving nature of co-researcher roles, participants’ capacities or data needs. Whereas in another national context no formal ethics review procedure for participatory research was in place at all, leaving researchers without clear institutional guidance. As a result, in order not to risk the delay of the project we had to elaborate informed consent on two different levels: One level was adapting to the formal, static IC process demanded by RECs. The other level was establishing an informal, dynamic IC process that was directed to the individual participants and communities. This meant for example using the legally accepted and REC approved forms and spending a lot of time and creativity to communicate these to the participants. The informal, dynamic IC process was the one that governed ethical engagement in the project. While the formal IC ensured compliance, the real ethical work happened through continuous dialogue, participant feedback, and power-sharing mechanisms, which were far more meaningful for ensuring trust, respect, and collaboration in the research process. This dual strategy thus involved pragmatically manoeuvring within institutional constraints while preserving space for participatory ethics that formal procedures could not accommodate.
So, this workaround had its own limitations - by maintaining a formal IC process that was detached from actual research relationships, we risked reinforcing a procedural rather than ethical view of consent. These tensions underscore the structural constraints imposed by traditional research governance, revealing the urgent need for IRBs and RECs to rethink their frameworks in ways that support responsive, participatory ethics rather than merely bureaucratic compliance.
This was especially difficult when doing participatory research with young people under the age of 18. As they are perceived as a vulnerable group by IRBs resp. RECs, the consent of their parents was necessary not only for participation but also for all types of output like photos, videos, etc. This made it difficult at times to maintain a participatory process with the young people as they could not freely negotiate their consent in what pictures or videos they wanted to produce or present.
Our approach furthermore faced significant limitations due to the COVID-19 pandemic and resulting global lockdowns, as face-to-face interactions - critical for building trust and collaborative relationships - were suddenly replaced by online interactions. While we employed digital and multimedia tools to adapt the consent process, these online settings sometimes reinforced inequalities, excluding participants with limited internet access or low digital literacy, and making it challenging to create genuinely inclusive, trusting environments. Consequently, certain relational and iterative elements of consent negotiation became harder to maintain, highlighting the need to further refine digital and remote ethical engagement practices (Malik, Wintersteller, Bonhoure et al., 2021).
Another limitation is that we could not always reach community consent. Due to COVID-19 regulations it was not possible to reach all relevant actors, let alone reaching them altogether and moderating community sessions. Isolation and being detached from families and communities was a major problem during the pandemic that also affected our research.
4.2. Formalities Versus a Differential Perspective on Equity in IC
The ethical challenges encountered in our cases can be understood as a tension between formalized informed consent procedures and the demands of equitable, participatory ethical practice. On the one hand, they are rooted in systemic constraints, such as legal frameworks, data protection regulations, and standardized IRB and REC procedures that define the formal boundaries of informed consent. On the other hand, they emerge from local institutional practices, where these abstract requirements are translated into rigid forms, templates, and procedural routines that often leave little room for situated and participatory ethical judgment. While intended as safeguards, such standardized approaches frequently prioritize institutional compliance over meaningful ethical engagement, reinforcing static, one-size-fits-all consent practices.
Earlier critiques of formalized informed consent have highlighted that these procedures are often anchored in assumptions of individual autonomy and procedural uniformity, thereby failing to adequately account for relational dynamics, participant diversity, and context-sensitive ethics. This distinction is crucial, as both systemic and local levels shape how ethical principles are operationalized in practice, and where they fail to do so adequately. Many institutionalized consent procedures do not sufficiently account for differences in data literacy, access to technology, language proficiency, socioeconomic context, or levels of trust in research institutions, nor do they accommodate the iterative and co-creative nature of participatory research.
Reflecting on our empirical work, we encountered precisely these tensions. Participants entered projects from markedly unequal starting positions, and standardized consent procedures often proved inadequate: treating all participants identically did not result in equitable engagement. Rather, those with greater institutional familiarity or technical confidence were better positioned to understand and navigate consent requirements, while others experienced consent procedures as overwhelming or exclusionary. These dynamics risk undermining the principle of equity and may inadvertently reinforce existing vulnerabilities.
Our empirical findings therefore underscore that informed consent should not be understood as a single moment of permission, but as a dynamic and negotiated practice shaped by uneven knowledge, resources, and constraints. To better conceptualize and address these differences, we developed based on our empirical experiences the concept of Differential Data Equity (DDE) as an analytical lens for ethical practice and future research (Mayer, 2025). DDE foregrounds the fact that participants’ capabilities to understand, question, and influence data use vary substantially, and that these inequalities must be made explicit and actively negotiated throughout a project. While equity is a foundational principle of research ethics, DDE advances a situated and context-sensitive-, rather than radically individualistic understanding of equity.
In line with ethics of care approaches (Keller & Kittay, 2017), DDE rejects an “equity-neutral” stance in favor of equity-promoting practices (Pierce, 2022), treating equity as a relational value that takes specific vulnerabilities, dependencies, and power relations seriously. Conceptually, DDE brings processual consent into conversation with broader ethical paradigms. It upholds deontological commitments to respect and protection by insisting on participants’ continued ability to withdraw, renegotiate, or limit data use over time. At the same time, it pursues consequentialist aims by actively adapting consent procedures to reduce disparities in participation and outcomes. DDE further emphasizes relational accountability, requiring researchers to remain attentive to evolving power relations and emerging risks as projects unfold.
By integrating these orientations, DDE demonstrates that flexibility in consent can advance justice, not by loosening ethical standards, but by ensuring that safeguards adjust to participants’ situated needs rather than expecting uniform compliance. In this sense, DDE provides a way forward by operationalizing fairness as the ongoing work of enabling participants’ agency, ensuring transparent communication about change, and establishing institutional structures that remain accountable over time. Rather than treating consent as a stable contract, DDE approaches it as a site in which rights, consequences, and care must be continuously aligned.
The capabilities approach helps to further clarify this perspective by shifting attention from formal permission to what participants are actually able to do within consent processes. While Sen (1999) emphasizes the expansion of real opportunities, and Nussbaum (2000) highlights the development of concrete capacities and conditions for meaningful action, DDE builds on both by focusing on participation in data practices alongside the support and recognition required to translate access into genuine agency. In this sense, DDE is grounded in relational theories of justice - particularly data justice and epistemic justice - as it foregrounds how unequal capacities, positions, and vulnerabilities shape people’s ability to meaningfully consent and to participate fairly in knowledge production (Fricker, 2007). DDE operates as both an analytical lens for interrogating the normative assumptions underlying conventional consent practices and an operational framework for reconfiguring them toward inclusive participant agency.
Operationally, DDE calls for flexible, inclusive, and reflexive approaches to IC that move beyond one-size-fits-all ethics toward more situated, community-oriented engagement. It seeks to balance power so that all participants can meaningfully engage in data generation, interpretation, and reuse. Inspired by relational and processual ethics, DDE treats consent as an evolving negotiation, acknowledging how power asymmetries, for example as those between academic researchers and co-researchers, shape participants’ ability to exercise agency. Concretely, DDE promotes tailored consent formats (written, oral, visual), iterative engagement that allows consent to be revisited and adjusted, and more equitable data access and governance arrangements to prevent research benefits from being concentrated among already privileged actors.
Finally, DDE also emphasizes collective governance and capacity-building, ensuring that participants are actively involved in shaping data practices rather than being reduced to sources of data extraction. By positioning data access, sharing, and preservation as key negotiation points in interactions with IRBs and RECs, DDE advocates for a more dynamic, inclusive, and just approach that bridges institutional requirements with the ethical realities of participatory research. Hence, DDE operates as an approach across multiple levels: shaping ethical practice at the level of individual participants, within research communities and participatory relations, and in negotiations with institutional frameworks such as IRBs, RECs and data governance regimes.
4.3. From Critique to Action: How to Make the IC Better for Participatory Research
Using DDE as an analytical lens, we now move from navigating constraints to ethical innovation - translating critique into concrete measures for making informed consent more dynamic, inclusive, and responsive in participatory research.
4.3.1. Understanding the Processual Nature of Consent Negotiation
IC must be understood as a continuous, iterative process rather than a one-time event. Participants’ roles, perceptions of risk, and comfort with data use may shift over time, necessitating mechanisms for ongoing consent renegotiation. A flexible IC model allows participants to revisit and adjust their involvement, ensuring that their engagement remains informed and voluntary throughout the research. This requires a commitment to improvement, with regular reviews of IC practices to adapt to evolving project dynamics and participants’ changing needs. Without this adaptability, participatory research risks reverting to extractive models, where early consent agreements lock participants into static roles that no longer align with their circumstances.
4.3.2. Adapting IC to Participant Diversity
IC procedures often assume a homogeneous participant pool, disregarding differences in data literacy, digital access, language proficiency, and legal familiarity. This can result in unequal participation, where those better equipped to navigate complex consent processes gain greater control over research outcomes. To mitigate this, IC must be made more accessible, using plain language, multiple formats (written, oral, visual), and interactive tools that accommodate diverse needs. Alternative consent mechanisms, such as videos, gamified apps, and participatory workshops, can enhance understanding and engagement, ensuring that all participants - not just those with institutional privilege - can meaningfully consent. Ethical consent practices thus must actively address structural inequalities, ensuring that consent processes are accessible, adaptable, and responsive to diverse needs. This requires rethinking power dynamics, not just in how consent is obtained, but in how data is governed, whose voices shape research decisions, and how research benefits are distributed. A differential approach to equity acknowledges that some participants may require additional support, alternative consent mechanisms, or more control over data-sharing decisions to engage on truly informed and voluntary terms. Thus, IC should not only protect participants but also empower them, fostering genuine agency and shared ownership in the research process.
4.3.3. Integrate Reflexivity and Positionality in IC Practices
Ethical research requires constant reflection on power imbalances between researchers and participants. IC is not simply a legal agreement but a site of ethical negotiation, where researchers must acknowledge their positionality and engage in collaborative reflections on how consent is structured, negotiated, and maintained. This includes recognizing the potential harms and risks embedded in research practices, ensuring transparency in how data will be used, and fostering a culture of open dialogue rather than mere contractual agreement. Hence, this also means understanding equity in a differential way, as a power balancing exercise - recognizing that participants do not engage with research from equal starting points in terms of knowledge, resources, and power. Implementing structured reflexive discussions within research teams to critically examine IC challenges helps shift the focus from procedural compliance to ethical accountability.
4.3.4. Foster Community-Oriented Consent
Standard IC forms center on individual decision-making, yet participatory research often involves collective knowledge production, where research outcomes impact entire communities. In some cases, individualized IC can be insufficient or even inappropriate, particularly when participants act as representatives of broader social groups. Moving toward community-oriented consent involves creating trust-based environments, where IC is discussed collectively, participants are encouraged to voice concerns, and consent agreements are co-designed with communities rather than imposed externally. By embedding ethics in relational processes, participatory projects can build mutual accountability rather than relying solely on legal contracts.
5. Conclusion
The IC procedure encapsulates the broader tensions between ethics and scientific inquiry, highlighting the friction between institutional safeguards, participant protections, and the pursuit of participatory research. While science values openness, efficiency, and knowledge production, ethical frameworks emphasize protection, autonomy, accountability, and responsible engagement – introducing constraints that challenge participatory research workflows. Standardized IC forms, designed primarily for compliance and institutional risk management, fail to accommodate the dynamic, relational, and evolving nature of participatory research. Conversely, participatory approaches advocate for iterative, context-sensitive consent models that prioritize trust, co-ownership, and collective decision-making. This tension underscores a fundamental challenge: How can research remain both ethically rigorous and methodologically sound without compromising either? How can we understand IC not merely as a bureaucratic requirement, but more as a living ethical practice, one that evolves alongside participants, ensuring that scientific inquiry remains both socially responsible and meaningfully inclusive.
In this contribution, we have sought to demonstrate the limitations of traditional IC models in participatory research and to propose a more adaptive, equity-centered approach. Our perspective is informed by the work of scholars like Benjamin (2016) and Salazar (2022), who argue that IC must consider social hierarchies, inequalities, and the collective dimensions of research participation. We began by tracing the historical foundations of IC, showing how it emerged primarily from biomedical ethics, with a focus on individual autonomy and legal protection. While these principles remain crucial, we highlighted how standardized, static consent frameworks struggle to accommodate the iterative, relational, and context-sensitive nature of participatory research.
Drawing on existing critiques of traditional IC approaches and our experiences in the project CoAct, we then examined the challenges of implementing IC in a participatory setting, particularly in research where co-researchers play an active role in shaping research objectives and outcomes. Through our empirical examples, we illustrated the barriers posed by rigid consent forms, institutional ethics requirements, and diverse participant needs, particularly in contexts where data access, literacy, and power differentials shape research engagement. These case studies underscored the need for more flexible, inclusive, and community-driven consent processes.
In the discussion section, we argued that IRB and REC requirements often prioritize institutional protection over ethical engagement, and we identified data access and sharing as a key entry point for negotiating more responsive and participatory consent frameworks. The concept of Differential Data Equity, developed inductively from these experiences, offers both an analytical lens for revealing how standardised consent reproduces inequities and an operational framework for reconfiguring IC toward genuine participant agency. In this sense, DDE can also be understood as contributing to a broader data justice-oriented perspective, as it prioritizes ongoing consent, equitable data governance, and capacity-building, ensuring that ethical research is not just about compliance but about fostering genuine collaboration and participant agency.
We then outlined key measures to improve IC practices, emphasizing the processual nature of consent negotiation, the importance of accessibility and alternative consent tools, the role of reflexivity in ethical decision-making, and the shift toward community-oriented consent. These strategies move beyond formal agreement and embed ethical responsibility in ongoing dialogue and collaboration. In line with a large body of scholarly work, we call for a broader transformation in how consent is understood and practiced in participatory research. While flexibility in consent is valuable, it necessitates safeguards to prevent unintentional shifts in ethical rigor. By prioritizing clear documentation and ongoing consent checks, researchers can ensure that adaptation does not occur at the expense of transparency or the fundamental rights of participants. Hence, ensuring accountability and transparency throughout these adaptations remains essential so that responsiveness does not come at the expense of consistent ethical standards.
Moving forward, we advocate for IRBs and RECs to adopt more dynamic, community-centred models of IC, integrating flexibility, accessibility, and relational ethics into their frameworks. In doing so, participatory research can move toward more just, inclusive, and socially responsible practices, ensuring that informed consent serves not as a legal formality but as a foundation for ethical, engaged, and equitable research.
In our case, framing IC as a collaborative agreement aimed to foster an environment of trust and shared responsibility, where co-researchers are not merely subjects but active partners in the research process. However, balancing these ideals with practical issues, such as differing levels of understanding, power dynamics, and evolving project goals, proved complex. Despite these challenges, this mutual understanding remained essential for establishing a solid ethical framework for ongoing collaboration, where IC is seen as a foundation for continuous engagement and renegotiation as a participatory research project evolves.
Footnotes
Acknowledgements
We thank all members of the CoAct consortium who shared and discussed their research practices and experiences with informed consent with us. We are also grateful to the many co researchers involved in the four CoAct subprojects. Their participation, research engagement, and reflections made the insights presented in this article possible.
Content for Publication
The content of this publication reflects only the authors’ views and the European Commission is not responsible for any use that may be made of the information it contains.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project has received funding from the European Union’s Horizon 2020 Research and Innovation Programme under grant agreement No. 873048 (CoAct: Co-designing Citizen Social Science for Collective Action) and Austrian Science Fund (V 699).
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.