Dwarna: a blockchain solution for dynamic consent in biobanking.

Area of Science:

• Biobanking
• Informatics
• Data Management

Background:

• Dynamic consent models empower research participants by providing ongoing control over their data usage.
• Traditional biobanking consent models often lack transparency and participant engagement.
• Integrating dynamic consent into biobanking is crucial for ethical research practices and regulatory compliance.

Purpose of the Study:

• To introduce Dwarna, a novel web portal designed for dynamic consent management within a biobank.
• To demonstrate how Dwarna can enhance participant engagement and control in biobanking.
• To address the compatibility challenges between blockchain technology and data protection regulations like the right to erasure.

Main Methods:

• Development of the Dwarna web portal connecting biobank stakeholders.
• Implementation of a blockchain system for immutable storage of consent preferences.
• Designing Dwarna's architecture to accommodate the right to erasure within a blockchain framework.

Main Results:

• Dwarna facilitates secure and transparent management of dynamic consent for biobanking.
• The portal establishes an immutable audit trail of consent changes using blockchain technology.
• Dwarna provides a viable solution for reconciling blockchain's immutability with the right to erasure.

Conclusions:

• The Dwarna portal enhances trustworthiness in biobanking through increased participant control and transparency.
• Dynamic consent, managed via blockchain, offers a robust solution for modern biobanking ethical and regulatory demands.
• Dwarna empowers research partners by facilitating informed consent, withdrawal, and data destruction requests.