BBMRI-ERIC and its Stakeholder Forum Patient Pillar – along with the project CY-Biobank – are calling on pediatric & rare disease communities to engage with us in a network tackling pediatric biobanking and its ethical, legal, and societal challenges. We intend to create awareness and involvement as we share expertise and best practices.
Our initiative aims to be inclusive of all the actors involved in translational research and pediatric biobanking in addition to patients and biobankers, researchers, clinicians, ELSI experts, minor participants, citizen groups, etc.
The link will be open from September 1st-30th, 2021.
Research in general and in clinical trials has long faced challenges in involving minors (for the purposes of this initiative, we use the term “minors” interchangeably with “children”). These challenges include profoundly rethinking issues of assent and consent, as well as moving towards dynamic and participatory models of regulation. Within a few years, we have observed an immense change of pace, from the parents’/guardians’ consent being a sine-qua-non condition for a research study to the minor’s agreement: the child is the participant, not the parents. Despite the fact that translational pediatric research deals primarily with genetic data from sample-based research, children have received little attention in the field of biobanking.
Pediatric biobanking challenges us, asking for the recognition of the minor as a valid interlocutor and participant in all respects, revolutionizing a practice that is urged to become inclusive and to model itself in a dynamic and participatory way.
Moreover, pediatric biobanking offers an excellent opportunity to face complex processes regarding ethical, legal, and societal issues (ELSI) and innovative research practices, allowing us to learn together in a sensitive field with minimum risk of direct physical harm for the participant. It provides an understanding of the biomolecular turn of research and medicine, emphasizes the impact of genetic knowledge on each child’s life and society in general, and expands the collaborative horizon at stake.
As children grow and mature, so must the attitude of all the players (parents, guardians, biobankers, researchers) such that a dynamic sense of empowerment is promoted and maintained in the biobanking extended community. It is an ELSI duty and a timely cultural investment to equip minors and adults with proper tools, ensuring that the minor is appropriately involved in the biobanking decision-making process. This highlights the profound link between engagement, reconsenting and follow-up; this link is critical for sustainable, fair biobanking.
View our webinar on Biobanking with Children (March 2021).
Consequently, our initiative has a twofold aim: