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Dwarna: a blockchain solution for dynamic consent in biobanking

Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used within the context of biobanking, it gives individuals access to information and control to determine how and where their biospecimens and data should be used. We present Dwarna—a web...

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Autores principales: Mamo, Nicholas, Martin, Gillian M., Desira, Maria, Ellul, Bridget, Ebejer, Jean-Paul
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7170942/
https://www.ncbi.nlm.nih.gov/pubmed/31844175
http://dx.doi.org/10.1038/s41431-019-0560-9
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author Mamo, Nicholas
Martin, Gillian M.
Desira, Maria
Ellul, Bridget
Ebejer, Jean-Paul
author_facet Mamo, Nicholas
Martin, Gillian M.
Desira, Maria
Ellul, Bridget
Ebejer, Jean-Paul
author_sort Mamo, Nicholas
collection PubMed
description Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used within the context of biobanking, it gives individuals access to information and control to determine how and where their biospecimens and data should be used. We present Dwarna—a web portal for ‘dynamic consent’ that acts as a hub connecting the different stakeholders of the Malta Biobank: biobank managers, researchers, research partners, and the general public. The portal stores research partners’ consent in a blockchain to create an immutable audit trail of research partners’ consent changes. Dwarna’s structure also presents a solution to the European Union’s General Data Protection Regulation’s right to erasure—a right that is seemingly incompatible with the blockchain model. Dwarna’s transparent structure increases trustworthiness in the biobanking process by giving research partners more control over which research studies they participate in, by facilitating the withdrawal of consent and by making it possible to request that the biospecimen and associated data are destroyed.
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spelling pubmed-71709422020-04-27 Dwarna: a blockchain solution for dynamic consent in biobanking Mamo, Nicholas Martin, Gillian M. Desira, Maria Ellul, Bridget Ebejer, Jean-Paul Eur J Hum Genet Article Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used within the context of biobanking, it gives individuals access to information and control to determine how and where their biospecimens and data should be used. We present Dwarna—a web portal for ‘dynamic consent’ that acts as a hub connecting the different stakeholders of the Malta Biobank: biobank managers, researchers, research partners, and the general public. The portal stores research partners’ consent in a blockchain to create an immutable audit trail of research partners’ consent changes. Dwarna’s structure also presents a solution to the European Union’s General Data Protection Regulation’s right to erasure—a right that is seemingly incompatible with the blockchain model. Dwarna’s transparent structure increases trustworthiness in the biobanking process by giving research partners more control over which research studies they participate in, by facilitating the withdrawal of consent and by making it possible to request that the biospecimen and associated data are destroyed. Springer International Publishing 2019-12-16 2020-05 /pmc/articles/PMC7170942/ /pubmed/31844175 http://dx.doi.org/10.1038/s41431-019-0560-9 Text en © The Author(s) 2019 Open Access This 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 license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license 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 license, visit http://creativecommons.org/licenses/by/4.0/.
spellingShingle Article
Mamo, Nicholas
Martin, Gillian M.
Desira, Maria
Ellul, Bridget
Ebejer, Jean-Paul
Dwarna: a blockchain solution for dynamic consent in biobanking
title Dwarna: a blockchain solution for dynamic consent in biobanking
title_full Dwarna: a blockchain solution for dynamic consent in biobanking
title_fullStr Dwarna: a blockchain solution for dynamic consent in biobanking
title_full_unstemmed Dwarna: a blockchain solution for dynamic consent in biobanking
title_short Dwarna: a blockchain solution for dynamic consent in biobanking
title_sort dwarna: a blockchain solution for dynamic consent in biobanking
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7170942/
https://www.ncbi.nlm.nih.gov/pubmed/31844175
http://dx.doi.org/10.1038/s41431-019-0560-9
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