Kajsa Norberg Wieslander: Toward best ethical practices for including children in childhood cancer research

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Abstract

This thesis is based on an empirical-ethical approach with the overall aim to explore and describe ethical aspects of including assent-aged children in childhood cancer research, and to develop empirically informed, ethically grounded guidance for research practice.

Study I was a qualitative interview study with healthcare professionals in Swedish pediatric oncology. The aim was to investigate their perspectives on ethical values, challenges, and opportunities to strengthen ethical aspects in recruitment of children with cancer to research, and their perspectives on ethical competence. Manifest inductive qualitative content analysis generated five categories: establishing relationships and trust, meeting informational needs, acknowledging vulnerability, balancing roles and interests, and ensuring ethical competence.

Study II was a qualitative interview study with members of the Swedish Ethical Review Authority. The aim was to explore their perspectives on ethical values, challenges, and opportunities to strengthen ethical aspects of participant recruitment in pediatric research, and their perspectives on ethical competence. Manifest inductive reflexive thematic analysis generated three themes: promoting participation, protecting children, and regulatory adherence.

Study III was a qualitative interview study with children, siblings, and parents who had participated in childhood cancer research. The aim was to describe how they experience children’s participation in assent. Latent inductive reflexive thematic analysis generated two themes: a moral and emotional commitment to research, and relational assent: trust, loyalty, andparental constraint.

Study IV was a prescriptive normative study aimed at developing ethically grounded guidance for children’s participation in assent. Using reflective equilibrium, a normative analysis was conducted based on empirical findings from Studies I–III, previous research, moral judgments, ethical principles, and relevant guidelines. The study proposed that childhood cancer research should not only respect children’s autonomy but also actively promote it, acknowledging that relationships and trust can both enable and constrain autonomy.

This thesis contributes to a context-specific understanding of ethical aspects in childhood cancer research, particularly concerning autonomy and vulnerability. It highlights the need to actively support children’s autonomy and participation in assent and the importance of ethical competence in navigating ethical, relational, and clinical complexities in research recruitment. Further, it provides empirically informed normative guidance for research practice.