1.8 - ED3: External Independent Ethics Advisors Report

The BioMedBridges project better enables researchers to access a wide range of data across different disciplines 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 and facilitating new discoveries in health research. 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 was 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 is the final report of the External Ethics Adviser. The overall assessment of the IEEA is that the ethical governance structure and framework, such as the relevant committees, EGF, audit, templates and tool, have worked well.