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1. Building Trust & Protecting Privacy: Analyzing Evidentiary Quality in a Blockchain Proof-of-Concept for Health Research Data Consent Management

Author

Victoria L. Lemieux, Raymond T. Ng, Darra L. Hofman, Casey P. Shannon, Bruce M. McManus, Sara Assadian, and Karen Lam

Subjects
Design modification, 020203 distributed computing, Blockchain, Computer science, Process (engineering), business.industry, media_common.quotation_subject, Internet privacy, 06 humanities and the arts, 02 engineering and technology, 0603 philosophy, ethics and religion, Trustworthiness, Proof of concept, 0202 electrical engineering, electronic engineering, information engineering, Quality (business), 060301 applied ethics, business, Reliability (statistics), media_common, Research data
Abstract

In this paper we use a case study of a proof-of-concept blockchain system for management of the consent process in sharing of participant health research data. The solution is assessed for the evidentiary value of the records it produces. Based on an archival theoretic evaluation framework, recommendations are provided as to how to increase the evidentiary quality of both on- and off-chain records through design changes or enhancements that would bring the solution into compliance with archival requirements for preservation of trustworthy records.

Published
2018

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