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.
Highlights
Trust is a major pillar in the relational dynamics within the process of genomic research
We provide an insight into how dynamic consent can potentially make biobanking, and subsequently genomic research, more efficient and transparent
The PostgreSQL database acts as an intermediary between WordPress and the blockchain, storing the pseudonyms and related unique identifiers (UUID), as well as other information about research partners and the study data
Summary
Trust is a major pillar in the relational dynamics within the process of genomic research. Dynamic consent is one protocol of consent that is ethical and complies with the law and regulations [2, 8] It aims to give individuals the opportunity to be better informed about their consent choices and the ongoing research process in general, and gives them control over how their biospecimens and data are used. This process can be facilitated if dynamic consent is available on a digital platform, which can be used to register interest in participating in new research projects. We discuss how Dwarna contributes a more trustworthy solution to biobanking
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
