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Paediatric biobanking for health: The ethical, legal, and societal landscape

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 part...

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Autores principales: Casati, Sara, Ellul, Bridget, Mayrhofer, Michaela Th., Lavitrano, Marialuisa, Caboux, Elodie, Kozlakidis, Zisis
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9551217/
https://www.ncbi.nlm.nih.gov/pubmed/36238242
http://dx.doi.org/10.3389/fpubh.2022.917615
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author Casati, Sara
Ellul, Bridget
Mayrhofer, Michaela Th.
Lavitrano, Marialuisa
Caboux, Elodie
Kozlakidis, Zisis
author_facet Casati, Sara
Ellul, Bridget
Mayrhofer, Michaela Th.
Lavitrano, Marialuisa
Caboux, Elodie
Kozlakidis, Zisis
author_sort Casati, Sara
collection PubMed
description 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.
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spelling pubmed-95512172022-10-12 Paediatric biobanking for health: The ethical, legal, and societal landscape Casati, Sara Ellul, Bridget Mayrhofer, Michaela Th. Lavitrano, Marialuisa Caboux, Elodie Kozlakidis, Zisis Front Public Health Public Health 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. Frontiers Media S.A. 2022-09-27 /pmc/articles/PMC9551217/ /pubmed/36238242 http://dx.doi.org/10.3389/fpubh.2022.917615 Text en Copyright © 2022 Casati, Ellul, Mayrhofer, Lavitrano, Caboux and Kozlakidis. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Public Health
Casati, Sara
Ellul, Bridget
Mayrhofer, Michaela Th.
Lavitrano, Marialuisa
Caboux, Elodie
Kozlakidis, Zisis
Paediatric biobanking for health: The ethical, legal, and societal landscape
title Paediatric biobanking for health: The ethical, legal, and societal landscape
title_full Paediatric biobanking for health: The ethical, legal, and societal landscape
title_fullStr Paediatric biobanking for health: The ethical, legal, and societal landscape
title_full_unstemmed Paediatric biobanking for health: The ethical, legal, and societal landscape
title_short Paediatric biobanking for health: The ethical, legal, and societal landscape
title_sort paediatric biobanking for health: the ethical, legal, and societal landscape
topic Public Health
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9551217/
https://www.ncbi.nlm.nih.gov/pubmed/36238242
http://dx.doi.org/10.3389/fpubh.2022.917615
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