1.7 - ED2: Progress of Compliance with Requirements of the Ethics Review Report

The BioMedBridges project better enables researchers to access a wide range of data to facilitate new discoveries in health research and allows re-analysis of datasets, some of which will have been generated through rare, expensive or unrepeatable investigations, thereby ensuring maximum utility of these datasets. However, the sharing of data generated through the use of human material brings about ethical challenges concerning the protection of research participant privacy and confidentiality. To address this, a comprehensive ethical governance structure has been put in place, including an Ethical Governance Committee consisting of external experts that advises the project’s Executive Steering Committee, and an Ethical Governance Framework document. In addition, to ensure compliance with the framework, the project is assisted by an Independent External Ethics Adviser. This report documents compliance with the ethical governance requirements and describes some "real-world challenges" concerning sharing of sensitive data.