The importance of children’s assent to research

In the field of childhood cancer, care and research are closely linked. Children treated for cancer are often involved as participants in studies that can contribute to better future cancer care. It is the parents who are asked to give their consent to the child’s participation in research, but the child’s assent is also a requirement. Despite this, children are not always involved in decisions regarding their research participation, often out of concern for the children.

An article in Nursing Ethics with Kajsa Norberg Wieslander as lead author argues insightfully for the importance of genuinely asking for children’s assent to research, and for the importance of continuously involving children in decisions regarding their research participation. The starting point is a multidimensional concept of autonomy as not only a right to be respected. Especially when it comes to school-age children (7–14 years), autonomy should also be understood as a value to be supported and developed. This further means that children’s assent and decision-making is understood as a relational activity. Through dialogue, through explanations at the child’s level, and through sensitivity to the child’s emotional needs, the child is supported to make their own decisions that might not otherwise have been possible.

Kajsa Norberg Wieslander further emphasizes trust as a prerequisite for relational autonomy. Trust is at the same time a result of the child being allowed to participate in decisions about their own participation in research. Trust is also described in the article as an ethical challenge. If parents trust that the care team will always act in the child’s best interests and therefore hand over decisions about the child’s research participation to the healthcare professionals/researchers, this can lead to the child feeling overrun and unable to influence their situation, which damages the child’s trust.

The article emphasizes that children’s assent is important to avoid children being treated as means and not as ends in themselves, as persons. Children’s assent to research counteracts their being instrumentalized. Children’s assent must therefore not be treated as a mere formality. Such an attitude towards their assent could recreate the risk of them being treated as means and not as persons with their own abilities, perspectives and ambitions.

The article concludes with a discussion of paternalism – such as excluding children from decision-making in the child’s best interest or making decisions that go against what the child has said they prefer. Paternalism towards children may be justified in some situations, but if autonomy is understood as a value and as a relational activity, then there are strong ethical reasons to support children’s autonomy in this multidimensional sense by including them in decision-making and respecting what they say. Especially when it comes to research participation. Since the benefits to the child of participating in research are uncertain, paternalism is particularly questionable here and if the child objects to participation in research, this must be respected, emphasizes Kajsa Norberg Wieslander.

You can find the clear and concise article here: Why children’s research assent matters: Exploring three dimensions of autonomy.

If you want to read the entire dissertation in which the article is included, you can find it here: Toward best ethical practices for including children in childhood cancer research.

Norberg Wieslander K, Godskesen T, Höglund AT, Frygner-Holm S, Juth N. Why children’s research assent matters: Exploring three dimensions of autonomy. Nursing Ethics. 2026;0(0). doi:10.1177/09697330261424347

Norberg Wieslander, K. 2026. Toward best ethical practices for including children in childhood cancer research. Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine 2222. 79 pp. Uppsala: Acta Universitatis Upsaliensis. ISBN 978-91-513-2701-3

This post in Swedish

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