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Title: Dwarna : a blockchain solution for dynamic consent in biobanking
Authors: Mamo, Nicholas
Martin, Gillian M.
Desira, Maria
Ellul, Bridget
Ebejer, Jean Paul
Keywords: Consent (Law)
Biobanks -- Law and legislation
Biological resource centers
Biobanks -- Moral and ethical aspects
Data protection -- Law and legislation -- European Union countries
Issue Date: 2019
Publisher: Nature Publishing Group
Citation: Mamo, N., Martin, G. M., Desira, M., Ellul, B., & Ebejer, J. P. (2019). Dwarna : a blockchain solution for dynamic consent in biobanking. European Journal of Human Genetics,
Abstract: 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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