Meaningful assent matters: Children’s autonomy as right, value, and relationship
Children's autonomy is created in their relationships to trusted adults.
Children with cancer are often asked to participate in research studies. They are often too young to consent, but they can assent to participate. But assent is not always obtained in consistent or meaningful ways. New research explores children’s autonomy in the context of research participance.
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Kajsa Norberg Wieslander defended her dissertation in February 2026.
Obtaining children’s assent is a prerequisite for them to be able to participate in research. Sometimes children themselves want to be part of the conversation, sometimes they leave the decision to their parents. Sometimes they are not even asked if they want to participate because they or their parents are deemed too fragile.
A recent Nursing Ethics publication warns that when children are not included in assent conversations in a meaningful way, research risks instrumentalising them – making them mere means to achieve research goals. Ensuring that children get opportunities to actively and meaningfully participate in decisions about research is essential for ethical research practice.
Respecting children’s autonomy is important both when they want to be involved in the decision-making process and when they do not. As important as it is to protect children from harm, this duty must not overshadow other fundamental ethical principles, including concern for the child’s developing autonomy, personhood, and right to be involved in decisions that affect them.
“This kind of paternalism – excluding children by default because they are viewed as vulnerable – is not always beneficial. Children may feel overlooked or ignored, which can damage their trust in both research and in the healthcare they receive,” Kajsa Norberg Wieslander, who recently defended her thesis on the topic at the Centre for Research Ethics & Bioethics, explains.
Kajsa Norberg Wieslander's dissertation explores how to move toward best ethical practices for including children in childhood cancer research.
Supporting the autonomy of children with cancer is best understood as supporting a relational practice created in interactions between the child, their parents and healthcare professionals. Kajsa Norberg Wieslander argues that autonomy should be treated as a value that must be actively supported through emotional, relational, and practical means. Trust and relationships can both enable and limit a child’s autonomy in the assent process, which makes it essential to ensure that assent is truly meaningful.
Although children with cancer are sometimes excluded from research conversations out of protection and care, this can conflict with children’s rights and research ethics principles. A relational approach becomes even more important for children who are more vulnerable.
“Now and in the future, children’s assent in childhood cancer research should be treated as more than a procedural requirement. It is an ethically significant practice grounded in respect for the child’s emerging autonomy, integrity, and personhood,” says Kajsa Norberg Wieslander.
Ultimately, promoting children’s autonomy also protects the integrity of research. When guidelines are not followed consistently (and meaningful assent is not obtained) – trust in research can be weakened – with consequences for children, families, and the scientific community.
By Anna Holm Bodin
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. 0(0). DOI: 10.1177/09697330261424347
Children with cancer in research
Improving childhood cancer survival rates requires recruiting children with cancer to research. This poses ethical dilemmas: balancing children's rights, family distress, and healthcare duties. The RUBIKS project, funded by The Swedish Childhood Cancer Fund, explored just this.
