Christian Loos¹, Silke Schicktanz¹

¹ Institute for Ethics and History of Medicine, University Medical Centre Göttingen

The ethical assessment of biomedical research involving children and adolescents is currently undergoing a significant shift. International guidelines such as the CIOMS Guidelines, the Declaration of Helsinki and European recommendations increasingly emphasise not only the duty to protect but also young people’s right to meaningful participation. This, however, raises the question of how participation is to be understood beyond isolated instances of consent or refusal – particularly in view of the temporal, future-oriented dimensions of assessing the consequences of biomedical research.

This paper argues that participation in this field should be understood as a temporally structured and anticipatory practice. Drawing on normative debates in research ethics and empirically informed approaches to examining and further developing participation formats involving children and young people in biomedical research contexts, the paper demonstrates that youth participation is shaped by different time horizons: by the developmental trajectories of judgement and decision-making capacity; by anticipatory expectations regarding risks, benefits and future life courses; and by long-term research consequences that affect young people in a particular way.

Central to this is a dual dimension of participatory practice: on the one hand, participation focuses on young people’s own futures by devising and helping to shape spaces of possibility; yet at the same time, it remains, in principle, provisional, revisable and open to rejection. On the other hand, anticipatory plans do not function as fixed targets, but as orienting points of reference that can be reviewed and modified over time. Against this backdrop, consent, rejection and withdrawal do not appear as isolated acts of decision-making, but as situated forms of expression of epistemic participation within ongoing processes of negotiation.

Building on this foundation, the lecture develops an ethical perspective on research participation that reflects temporal dimensions, taking young people seriously not primarily as objects requiring protection or as mere consent-givers, but as epistemic actors with independent perspectives on the future. The paper thus makes a conceptual contribution to the further development of participatory research ethics by conceptualising it as a processual, anticipatory and learning practice.