Paediatric biobanking for health

The ethical, legal, and societal landscape

Bibliographic Data

ID22080954
AuthorsSara Casati (0000-0002-9971-9706, Biobanking and Biomolecular Resources Research Infrastructure Consortium, corresponding author), Bridget Ellul (0000-0003-4146-0663, University of Malta, corresponding author), Michaela Th Mayrhofer (0000-0001-6932-0473, Biobanking and Biomolecular Resources Research Infrastructure Consortium), Marialuisa Lavitrano (0000-0003-4852-1318, University of Milano-Bicocca), Elodie Caboux (0000-0001-8393-6979, Centre international de recherche sur le cancer), Zisis Kozlakidis (0000-0002-3836-7209, Centre international de recherche sur le cancer)
Year2022
Volume10
Pages917615-917615
Publication date2022-09-27
Open AccessYes
TypeARTICLE
VenueFrontiers in Public Health (JOURNAL)
Journal identifiersISSN: 2296-2565 • E-ISSN: 2296-2565
PublisherFrontiers Media SA (PUBLISHER • CH)
DOI10.3389/fpubh.2022.917615
PMID36238242
OpenAlexW4297369474
LanguageEN
Citations received1
References cited76

Biobanks play a central role in pediatric translational research, which deals primarily with genetic data from sample-based research. However, participation of children in biobanking has received only limited attention in the literature, even though research in general and in clinical trials in particular have a long history in involving minors. So, we resolved to explore specific challenging ethical, legal, and societal issues (ELSI) in the current pediatric biobanking landscape to propose a way forward for biobanking with children as partners in research. Methodologically, we first established the accessibility and utilization of pediatric biobanks, mainly in Europe. This was supported by a literature review related to children's participation, taking into account not only academic papers but also relevant guidelines and best-practices. Our findings are discussed under five themes: general vulnerability; ethical issues—balancing risks and benefits, right to an open future, return of results including secondary findings; legal issues—capacity and legal majority; societal issues—public awareness and empowerment; and responsible research with children. Ultimately, we observed an on-going shift from the parents'/guardians' consent being a sine-qua-non condition to the positive minor's agreement: confirming that the minor is the participant, not the parent(s)/guardian(s). This ethical rethinking is paving the way toward age-appropriate, dynamic and participatory models of involving minors in decision-making. However, we identified a requirement for dynamic tools to assess maturity, a lack of co-produced engagement tools and paucity of shared best practices. We highlight the need to provide empowerment and capability settings to support researchers and biobankers, and back this with practical examples. In conclusion, equipping children and adults with appropriate tools, and ensuring children's participation is at the forefront of responsible pediatric biobanking, is an ethical obligation, and a cornerstone for research integrity

Best practice · Biobank · Bioinformatics · Citizen journalism · Empowerment · Engineering ethics · Guardian · Political science · Public relations · Sine qua non · Biomedical Ethics and Regulation · Engineering · Ethics and Legal Issues in Pediatric Healthcare · Ethics in Clinical Research · Law · Medicine · Psychology

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