Dwarna: a blockchain solution for dynamic consent in biobanking

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.

Patient Consent Management by a Purpose-Based Consent Model for Electronic Health Record Based on Blockchain Technology

“…Our system is different from most purpose-based centralized systems, in that ours is a fully decentralized blockchain approach. The Dwarna project [11] also provides a blockchain solution for dynamic consent in biobanking; however, they use boolean-based consent to allow requestors to access data because the purpose is very simple in their research.…”

“…There are also decentralized models that employ blockchain technology [9,10]. Among them, the Dwarna project [11] provides a well-designed web portal for dynamic consent that harnesses the blockchain ledger, which acts as a hub connecting participants in the biobank project.…”

Detection and protection mechanisms against vulnerabilities are needed in blockchain applications

“…Mamo et al wrote an article entitled "Dwarna: a blockchain solution for dynamic consent in biobanking" [1]. The authors did not show any mechanisms of detection and protection against blockchain consensus attacks in the paper.…”

Harnessing real-world evidence to reduce the burden of noncommunicable disease: health information technology and innovation to generate insights

“…Nevertheless, informed consent can limit the access to certain types of data or information from some regions. Advances in the blockchain technology can also enable dynamic informed consent (Mamo et al 2020).…”