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Background <p>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.</p> Main body <p>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.</p> Conclusion <p>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.</p>

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

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2025年4月23日

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  • Lourdes Cantarero-Arevalo,
  • Lotte Stig Nørgaard

摘要

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.