Donor's support tool: Enabling informed secondary use of patient's biomaterial and personal data

摘要

Purpose: Biomedical research is being catalyzed by the vast amount of data rapidly collected through the application of information technologies ( IT). Despite IT advances, the methods for involving patients and citizens in biomedical research remain static, paper-based and organized around national boundaries and anachronistic legal frameworks. The purpose of this paper is to study the current practices for obtaining consent for biobanking and the legal requirements for reusing the available biomaterial and data in EU and finally to present a novel tool to this direction enabling the secondary use of data and biomaterial.