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Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues

Research biobanks that enroll minors face important practical, ethical, and regulatory challenges in reconsenting participants when they reach the age of 18. Federal regulations governing research in the United States provide minimal guidance and allow for a range of practices, including waiving the...

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Detalles Bibliográficos
Autores principales: Kasperbauer, T. J., Halverson, Colin
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8301072/
https://www.ncbi.nlm.nih.gov/pubmed/34307413
http://dx.doi.org/10.3389/fmed.2021.686264
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author Kasperbauer, T. J.
Halverson, Colin
author_facet Kasperbauer, T. J.
Halverson, Colin
author_sort Kasperbauer, T. J.
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description Research biobanks that enroll minors face important practical, ethical, and regulatory challenges in reconsenting participants when they reach the age of 18. Federal regulations governing research in the United States provide minimal guidance and allow for a range of practices, including waiving the requirement to obtain reconsent. Some commentators have argued that institutional review boards should indeed grant such waivers, given the low risks of biobank-based research and the impracticality of contacting all participants when they turn 18. There is also significant ethical debate about the age at which adolescents can make authentic, autonomous decisions regarding their research participation. This paper reviews these issues in detail, describes the current state of the ethical discussion, and outlines evidence-based policies for enrolling minors into research biobanks.
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spelling pubmed-83010722021-07-24 Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues Kasperbauer, T. J. Halverson, Colin Front Med (Lausanne) Medicine Research biobanks that enroll minors face important practical, ethical, and regulatory challenges in reconsenting participants when they reach the age of 18. Federal regulations governing research in the United States provide minimal guidance and allow for a range of practices, including waiving the requirement to obtain reconsent. Some commentators have argued that institutional review boards should indeed grant such waivers, given the low risks of biobank-based research and the impracticality of contacting all participants when they turn 18. There is also significant ethical debate about the age at which adolescents can make authentic, autonomous decisions regarding their research participation. This paper reviews these issues in detail, describes the current state of the ethical discussion, and outlines evidence-based policies for enrolling minors into research biobanks. Frontiers Media S.A. 2021-07-09 /pmc/articles/PMC8301072/ /pubmed/34307413 http://dx.doi.org/10.3389/fmed.2021.686264 Text en Copyright © 2021 Kasperbauer and Halverson. 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 Medicine
Kasperbauer, T. J.
Halverson, Colin
Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues
title Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues
title_full Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues
title_fullStr Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues
title_full_unstemmed Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues
title_short Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues
title_sort adolescent assent and reconsent for biobanking: recent developments and emerging ethical issues
topic Medicine
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8301072/
https://www.ncbi.nlm.nih.gov/pubmed/34307413
http://dx.doi.org/10.3389/fmed.2021.686264
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