Why children’s research assent matters: Exploring three dimensions of autonomy

Children's assent is an ethical and legal requirement for research that involves them. Nevertheless, studies suggest that children with cancer are not always involved in research decisions. This raises important ethical questions about how children's participation in assent should be supported and on what ethical grounds. In this paper, we explore three dimensions of autonomy in research with children: autonomy as a right, as a value, and as relational. We argue that it is important not only to respect children's autonomy but to also promote it as a value, by actively supporting children's autonomy. Central to this approach is an understanding of how relationships and trust can both enable and constrain children's autonomy. We suggest that children's autonomy may be supported in practice through capacity-sensitive participation, child-adapted and iterative information provision. This requires ongoing dialogue that is responsive to children's emotional, cognitive, and relational contexts, with particular attention to fears, decision-making challenges, and voluntariness. While concern for the well-being of children with cancer is essential, it should not be used as a justification to exclude them from the assent process. Respect for children as persons should guide recruitment to paediatric oncology research.

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Publication Details

Journal
Nursing Ethics
Published
2026-03-02
DOI
https://doi.org/10.1177/09697330261424347
Primary Topic
Ethics in Clinical Research
Type
article
Field-Weighted Citation Impact
0.00
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article

Why children’s research assent matters: Exploring three dimensions of autonomy

Tove Godskesen, Kajsa Norberg Wieslander, Sara Frygner-Holm, Anna T. Höglund et al.
Nursing Ethics
Ethics in Clinical Research
article

Why children’s research assent matters: Exploring three dimensions of autonomy

Tove Godskesen, Kajsa Norberg Wieslander, Sara Frygner-Holm, Anna T. Höglund, Niklas Juth
article en

Abstract

Children's assent is an ethical and legal requirement for research that involves them. Nevertheless, studies suggest that children with cancer are not always involved in research decisions. This raises important ethical questions about how children's participation in assent should be supported and on what ethical grounds. In this paper, we explore three dimensions of autonomy in research with children: autonomy as a right, as a value, and as relational. We argue that it is important not only to respect children's autonomy but to also promote it as a value, by actively supporting children's autonomy. Central to this approach is an understanding of how relationships and trust can both enable and constrain children's autonomy. We suggest that children's autonomy may be supported in practice through capacity-sensitive participation, child-adapted and iterative information provision. This requires ongoing dialogue that is responsive to children's emotional, cognitive, and relational contexts, with particular attention to fears, decision-making challenges, and voluntariness. While concern for the well-being of children with cancer is essential, it should not be used as a justification to exclude them from the assent process. Respect for children as persons should guide recruitment to paediatric oncology research.

Nursing Ethics
Uppsala University (SE), Nord University (NO), Karolinska Institutet (SE)
Peace, Justice and strong institutions
Openalex Percentile: Top 39%
Ethics in Clinical Research
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Why children’s research assent matters: Exploring three dimensions of autonomy — Tove Godskesen, Kajsa Norberg Wieslander, et al. · Nursing Ethics (2026) | TGRS Research Map | TGRS