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Why children's research assent matters: Exploring three dimensions of autonomy
Kajsa Norberg Wieslander1, Tove Godskesen1,2, Anna T Höglund1
1Department of Public Health and Caring Sciences, Centre for Research Ethics & Bioethics (CRB), Uppsala University, Uppsala, Sweden.
Nursing Ethics
|March 3, 2026
Summary
Children
Area of Science:
- Bioethics
- Pediatric Oncology Research
Background:
- Children's assent is ethically and legally mandated for research participation.
- Evidence indicates children with cancer are often excluded from research decisions.
- This exclusion raises ethical concerns regarding support for children's assent.
Purpose of the Study:
- To explore ethical frameworks for supporting children's autonomy in research.
- To examine autonomy as a right, value, and relational concept in pediatric research.
- To advocate for promoting, not just respecting, children's autonomy in assent.
Main Methods:
- Conceptual analysis of autonomy in research ethics.
- Exploration of relational aspects of autonomy, including trust and context.
- Discussion of practical strategies for enhancing assent processes.
Main Results:
- Children's autonomy in research is multifaceted: a right, a value, and relational.
- Trust and relationships significantly influence children's autonomy.
- Capacity-sensitive participation and tailored information provision can support autonomy.
Conclusions:
- Actively promoting children's autonomy is ethically imperative.
- Ongoing, responsive dialogue is crucial for effective assent.
- Respect for children as persons should guide all recruitment in pediatric oncology research.
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