Ethical integration of citizen science and youth participatory action research: insights from the YouthChronic project

Abstract

Background

Engaging youth in public health research may foster inclusivity and equity. Citizen science (CS) and youth participatory action research (YPAR) aim to democratise research by promoting active involvement but are not free from ethical challenges. CS emphasises large-scale participation through digital tools, while YPAR empowers youth as co-researchers.

Main body

This article reflects on the YouthChronic project, a Danish initiative involving young people with chronic conditions through CS and YPAR. It examines ethical considerations such as emotional and physical risks, confidentiality, support balance, marginalisation, and fostering healthy relationships. It also reviews recent recommendations for youth engagement, including meaningful involvement, inclusivity, training, addressing power imbalances, and creating safe spaces.

Conclusion

Combining CS and YPAR may offer a transformative approach to youth public health research if anchored in ethical principles. Our YouthChronic experience highlights the importance of an agreed-upon ethical framework with youth participants to ensure trustworthy, inclusive discussions and risk mitigation.

Plain English Summary

Youth with long-term health conditions face unique challenges, and involving them in public health research ensures their voices are heard and their needs are addressed. Two approaches, citizen science (CS) and youth participatory action research (YPAR), aim to include young people in meaningful ways. CS involves large groups of people contributing to research using digital tools, making it easy for many to participate. YPAR empowers young people to work as co-researchers, giving them a direct role in the research process.

However, both methods have ethical challenges, such as ensuring confidentiality, addressing emotional and physical risks, and maintaining a supportive and inclusive environment. This article uses the YouthChronic project as a case study. This Danish project combined CS and YPAR to involve young people with chronic conditions in research and reflect on ethical principles, such as promoting safe and inclusive participation, respecting confidentiality, and balancing support and independence. It also followed recommendations for better youth engagement, such as providing training, addressing power differences, and creating welcoming spaces.

YouthChronic's experience shows that combining these two approaches can be a powerful way to engage youth in public health research. Success relies on establishing clear ethical guidelines that young participants agree with to protect them and create trust. This approach ensures that research is inclusive, respectful, and fair to all involved.

Background

Engaging young people in public health research is increasingly recognised as essential for creating inclusive, representative, and impactful interventions [1, 2]. However, such engagement is not exempt from methodological and ethical challenges [3, 4]. Citizen Science (CS) and youth participatory action research (YPAR) are two methodologies with the potential to democratise research by actively involving participants in various stages of the research process. These approaches enhance public understanding and engagement with science [5,6,7,8,9].

CS involves public participation and collaboration in scientific research to expand scientific knowledge. Non-professional scientists or laypeople contribute to data collection, analysis, and dissemination, often facilitated by digital tools for large-scale engagement. In contrast, YPAR empowers participants as co-researchers, shaping the research agenda and outcomes. Both methodologies are committed to inclusivity, democratisation, and social justice by challenging traditional knowledge hierarchies and valuing diverse contributions.

Conceptual foundations of CS and YPAR

CS and YPAR are rooted in distinct but complementary epistemological, ontological, and axiological frameworks. Citizen Science promotes knowledge co-creation between experts and laypeople (ontology), values diverse ways of knowing (epistemology), and emphasises ethical considerations such as community empowerment (axiology) [9]. It is built on the belief that scientific knowledge should be accessible and participatory. YPAR, influenced by critical youth theory and the new sociology of youth, sees young people as active agents in research (ontology). It prioritises their voices and experiences to address systemic inequalities (axiology) and employs participatory methods that recognise the unique perspectives young people bring to research (epistemology) [10]. Both approaches align with the United Nations Convention on the Rights of the Child, advocating for youth participation in decisions affecting their lives [11].

Ethical challenges in CS and YPAR

While CS and YPAR offer transformative potential, they also introduce critical ethical challenges. Suri et al. [1] argue that patient and public involvement and engagement (PPIE) must be anchored in ethical safeguards to prevent tokenism, power imbalances, and participant exploitation. Similarly, Bailey et al. [2] highlight that these ethical risks are even more pronounced when engaging youth in health research. Without proper safeguards, participatory approaches may unintentionally marginalise certain voices, reinforce power imbalances, and create inequitable research practices [1, 2]. For instance, school projects that engage only outspoken students or youth councils dominated by influential leaders may exclude marginalised or less vocal peers. This exclusion can lead to research outcomes that fail to represent the full diversity of youth experiences, ultimately perpetuating inequalities.

CS projects typically involve a broad and diverse group of participants, enhancing data representativeness and promoting health literacy. However, ensuring equal representation remains challenging, particularly for groups with limited access to technology or research skills. Unequal participation risks undermining the very inclusivity that CS seeks to achieve.

YPAR fosters a sense of ownership and agency by engaging young people in all stages of research—from question formulation to data analysis and dissemination. Its qualitative focus captures nuanced social issues and lived experiences, making research more relevant and impactful [12, 13]. However, this deep involvement raises ethical concerns about safeguarding young participants’ rights, emotional well-being, and potential exploitation of personal experiences [14].

Reflections from the YouthChronic project

Given the opportunities and risks of CS and YPAR, this article retrospectively examines the ethical challenges and lessons learned from the YouthChronic Project. Using the risks identified by Suri et al. [1] and the recommendations proposed by Bailey et al. [2], we reflect on ensuring meaningful participation, safeguarding participant well-being, and fostering equitable collaboration. Suri et al. [1] advocate for an "ethical anchor" in PPIE, arguing that participatory research must be guided by ethical principles to avoid tokenism, power imbalances, and participant exploitation. Meanwhile, Bailey et al. [2] emphasise the benefits and barriers of youth engagement in health research, calling for co-creation, institutional commitment, and ethical safeguards to sustain meaningful involvement.

By integrating these ethical frameworks, the current revision of our YouthChronic Project aims to demonstrate how CS and YPAR can ethically empower young participants, promote inclusivity, and generate research outcomes that reflect youth perspectives provided an agreed-upon ethical framework with youth participants to ensure trustworthy, inclusive discussions and risk mitigation (Table 1).

Table 1 Description of the YouthChronic Project

Fig. 1

Themes selected by the young team members to be investigated

Ethical assessment and integration in a youth framework

To ensure the ethical integrity of participatory research involving young people, it is crucial to systematically assess potential risks and challenges while fostering meaningful and equitable engagement. The YouthChronic project provided valuable insights into the ethical complexities of CS and YPAR. By reflecting on our experiences through an ethical lens, we identified key areas where ethical safeguards must be strengthened to uphold the principles of inclusivity, agency, and well-being. This section explores the ethical considerations that emerged throughout the project and outlines strategies for responsible youth engagement guided by established ethical frameworks [1, 2].

Emotional risk: Engaging YPAR partners posed emotional risks, especially when sharing sensitive lived experiences. This occurred two times, requiring bilateral discussions between AC-UPCH and YPAR partners for additional support. Some CS participants also shared that the topic selected by the YPAR partners was too sensitive for them. Moreover, AC-UPCH faced emotional challenges, underlining the need for adequate resources for all research participants.

Developing pre-engagement preparation training and resources for YPAR partners, AC-UCPH researchers, and CS participants who solely engage digitally is essential to mitigate emotional risks. This should include ongoing support through regular check-ins and briefing and debriefing sessions to address any emotional issues that may arise during the project. As inspiration for a safe debriefing, we suggest the explicit and implicit debriefer strategies contributing to psychological safety before, during, and after debriefing, which Kolbe et al. proposed for healthcare settings [16].

In the YouthChronic project, the diversity of conditions, age range, and interests among YPAR participants led to ethical dilemmas, as certain themes triggered reactions in specific subgroups. As noted by the youth advisors consulted by Bailey et al. [1], it is essential to abandon the idea of having universal youth representatives. Instead, themes should be investigated only among those genuinely interested in them.

Physical risk: The physical environment of the PPIE activities posed challenges, particularly for one of the YPAR partners, who, due to the severity of the condition, could not leave home throughout the project's duration. Therefore, all meetings were held in a hybrid format. However, this approach was not feasible for certain activities, such as attending academic conferences, which limited engagement and motivation and created some exclusion. As suggested by the UC Berkeley YPAR Hub, the number of participants who can participate in person should be balanced with those who cannot.

Confidentiality and personal data: The project ensured that YPAR partners and CS participants were fully informed and authorised to use images or personal information. However, maintaining anonymity was challenging, especially for YPAR participants who were public advocates. While they could choose public or anonymous, their advocacy roles often made anonymity difficult when participating in public events. For those engaging digitally, all data were securely stored by the University of Copenhagen, ensuring compliance with data protection protocols.

Some CS participants were part of the networks of YPAR researchers. To ensure confidentiality and anonymity, YPAR researchers who analyse the data from CS participants should avoid analysing data from individuals in their network. This practice would maintain the data's integrity, which aligns with Kaiser’s suggestion for protecting respondent confidentiality in qualitative research [17]. Balancing the confidentiality of data versus the confidentiality of youth involves several considerations. While the youth’s contributions as co-researchers, if they wish so, can be publicly acknowledged, their data can still be anonymised to protect their privacy. For this specific article, the YPAR partners preferred not to be acknowledged by their names, ensuring their anonymity. This approach respects their wishes and upholds ethical research standards.

Support versus paternalism: The AC-UCPH took several steps to avoid power imbalances. The first three meetings with the YPAR partners were dedicated to creating an atmosphere of trust, openness, and collaboration. This involved team-building exercises, open discussions about expectations and goals, and establishing clear communication channels. Additionally, mechanisms were put in place to help share power more equitably. These included providing compensation and honorariums for youth participants, accommodating their schedules to ensure convenient meetings, and offering training sessions to equip them with the necessary research skills before joining the team. Despite these efforts, there were still instances where YPAR partners hesitated to ask questions or seek clarification, particularly during collaborative tasks like funding applications and article writing. This indicates that further efforts are needed to encourage active engagement and ensure that all voices are heard.

From the project's outset, regular, anonymous feedback mechanisms should allow participants to express their experiences and any perceived power imbalances. Moreover, explicit discussions about power—often rare—and reflexivity are crucial for examining assumptions and power differentials [18]. This will help identify and address potential concerns and ensure the participants feel supported and heard throughout the project.

Marginalisation: The project aimed to avoid perpetuating harm or reinforcing systemic oppression. However, two instances of frustration arose. One involved the CS adolescents participating digitally, who struggled to relate to the topic chosen by the YPAR partners (intimacy and selective disclosure) and felt excluded. The other frustration stemmed from the lack of funding for advocacy actions after the project’s conclusion, which was especially concerning for those young people who had hoped the YouthChronic project would raise awareness, facilitate lasting change, and reduce marginalisation.

To prevent potential marginalisation from inadequate funding, it is advisable to delay the start of PPIE activities until the necessary funding for advocacy and follow-up activities is secured. Alternatively, researchers—academics and YPAR partners—should discuss how best to utilise the available funding. In the YouthChronic project, only two YPAR partners expressed interest in pursuing research, while the others primarily focused on the advocacy opportunities presented. It may have been more beneficial to prioritise advocacy activities over data collection; however, this could have compromised the reliability of the research findings.

Building and maintaining healthy relationships: Establishing clear personal and professional boundaries between AC-UCPH and the YPAR partners was a significant learning point. Efforts to reduce power imbalances may have led to an overly informal approach. Communication challenges were also apparent, with emails proving ineffective. As a result, the project transitioned to using WhatsApp for communication, which raised ethical concerns regarding privacy and professional boundaries. After two years of collaboration, the decision was made to shift from a partnership-based approach to a purely youth-led research model, with YPAR partners taking the project's lead. However, PPIE activities gradually faded, and AC-UCPH faced an ethical dilemma: whether to regain control or interpret the youth disengagement as an indication of project completion.

It is crucial to clearly outline the different types of collaboration available at the beginning of the project and allow the young researchers to choose the level of involvement that best suits their interests and needs. Additionally, communication channels should be tailored to the preferences of the young participants. In this case, email communication was less effective, and WhatsApp was preferred, demonstrating the importance of adapting to participant preferences [2].

Conclusion

Suri et al.'s [1] ethical framework and Bailey et al.'s [2] recommendations were invaluable for assessing and integrating ethical aspects in the YouthChronic project processes and outcomes. These tools facilitated a standard assessment of risks, power-sensitive metacommunication, and prioritisation of advocacy over academic pursuits. This reflection underscores the importance of ethical considerations in participatory research, highlighting the need for continuous ethical reflection to foster inclusive and equitable research practices and design an ethical framework in collaboration with youth research participants. Writing out these reflections is crucial for guiding future work, ensuring that ethical principles are consistently applied and all voices are heard and respected.