Universiteit Leiden

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Targeted Informed consent: empowering young participants in medical-scientific research

Promotor: J.M. van den Broek Co-promotor: M.C. de Vries

P. Grootens-Wiegers
06 december 2016
Thesis in Leiden Repository

Increasingly, pleas are made for extending the involvement of minors in decision-making about participation in pediatric research. However, a number of issues arise from this desired participation of minors. First, involvement in decision-making requires children and adolescents to be adequately informed about what participation in research entails. Second, the plea for increased involvement in decision-making requires further investigation whether children indeed can, should and want to play a role in the decision about research participation. This thesis addresses these issues and thereby contributes to insights in how to empower minors in the context of informed consent for research participation. New informed consent material was developed in close cooperation with children and other end-users, the process of which is described and evaluated. Also, insights in the role that minors can, should and want to play in the informed consent procedure are described. These insights were obtained by reviewing multidisciplinary scientific evidence on the competence of minors, by an ethical reflection on the view on children that we should adopt, and by consulting minors themselves about the perspectives on their role in decision-making. Finally, based on this research, recommendations are provided on how to empower minors in decision-making about research participation.

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