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Ethical and deontological aspects of pediatric biobanks: the situation in Italy

While pediatric biobanks are a precious resource for scientific research to improve our understanding of genetic pathologies, the value of these studies should be considered together with the value of the privacy rights of pediatric donors, as they are particularly vulnerable and in many cases unabl...

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Autores principales: Cannovo, Nunzia, Guarino, Rosa, Fedeli, Piergiorgio
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Netherlands 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7452917/
https://www.ncbi.nlm.nih.gov/pubmed/32314114
http://dx.doi.org/10.1007/s10561-020-09833-4
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author Cannovo, Nunzia
Guarino, Rosa
Fedeli, Piergiorgio
author_facet Cannovo, Nunzia
Guarino, Rosa
Fedeli, Piergiorgio
author_sort Cannovo, Nunzia
collection PubMed
description While pediatric biobanks are a precious resource for scientific research to improve our understanding of genetic pathologies, the value of these studies should be considered together with the value of the privacy rights of pediatric donors, as they are particularly vulnerable and in many cases unable to discern the meaning of the donation of biological material and the related implications of the research. Thus this work calls for reflection on the numerous ethical and legal issues involved in the development and regulation of these biobanks. In particular, it explores what form of consent best balances the intangible rights of the minor, on the one hand, and the development of technological progress and scientific research, on the other, and examines the implications of the collection of biological material of minors in biobanks. It focuses on solutions to bridge the gaps in current Italian legislation, especially in light of the current lack of attention to the interests of fragile subjects. In addition, this work presents an overview of the pediatric biobanks in Italy.
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spelling pubmed-74529172020-09-02 Ethical and deontological aspects of pediatric biobanks: the situation in Italy Cannovo, Nunzia Guarino, Rosa Fedeli, Piergiorgio Cell Tissue Bank Full Length Paper While pediatric biobanks are a precious resource for scientific research to improve our understanding of genetic pathologies, the value of these studies should be considered together with the value of the privacy rights of pediatric donors, as they are particularly vulnerable and in many cases unable to discern the meaning of the donation of biological material and the related implications of the research. Thus this work calls for reflection on the numerous ethical and legal issues involved in the development and regulation of these biobanks. In particular, it explores what form of consent best balances the intangible rights of the minor, on the one hand, and the development of technological progress and scientific research, on the other, and examines the implications of the collection of biological material of minors in biobanks. It focuses on solutions to bridge the gaps in current Italian legislation, especially in light of the current lack of attention to the interests of fragile subjects. In addition, this work presents an overview of the pediatric biobanks in Italy. Springer Netherlands 2020-04-20 2020 /pmc/articles/PMC7452917/ /pubmed/32314114 http://dx.doi.org/10.1007/s10561-020-09833-4 Text en © The Author(s) 2020 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
spellingShingle Full Length Paper
Cannovo, Nunzia
Guarino, Rosa
Fedeli, Piergiorgio
Ethical and deontological aspects of pediatric biobanks: the situation in Italy
title Ethical and deontological aspects of pediatric biobanks: the situation in Italy
title_full Ethical and deontological aspects of pediatric biobanks: the situation in Italy
title_fullStr Ethical and deontological aspects of pediatric biobanks: the situation in Italy
title_full_unstemmed Ethical and deontological aspects of pediatric biobanks: the situation in Italy
title_short Ethical and deontological aspects of pediatric biobanks: the situation in Italy
title_sort ethical and deontological aspects of pediatric biobanks: the situation in italy
topic Full Length Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7452917/
https://www.ncbi.nlm.nih.gov/pubmed/32314114
http://dx.doi.org/10.1007/s10561-020-09833-4
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