BBMRI-ELSI: Biobanking with children

Datum: 17 March 2021
Locatie: Webinar

Biobanking with children is a practical vector of empowerment and engagement. Without having to expose the minor participants to possible clinical risks, it provides understanding of the biomolecular turn of research and medicine, emphasises the impact of genetic knowledge on the life of each child and on society in general, and expands the collaborative horizon at stake.
However, it offers challenges as it poses specific ethical issues in relation to assent, consent and re-consent and therapeutic misconception, while it asks for a rethinking of the processes of data sharing and disclosure of results within a rights horizon, tailored to children.
Moreover, as a vulnerable population, minors must be adequately protected, at the same time they need to be recognised and included as valuable participants throughout the biobanking process. As children grow and mature, so must the attitude of all the players (parents, guardians, teachers, researchers) such that a dynamic sense of empowerment is fostered and maintained in the biobanking community and the society it serves.

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