Data Sharing and Data Governance

This priority area is focused on working to understanding the data gap in global health research and creating models to facilitate data access and sharing of health research information between multi-site stakeholders. IEPI facilitates governance plans that are responsive to ethical concerns and inspire trust from data contributors and the research community.

Current Projects

Tuberculosis: Identifying ethical issues related to the privacy and confidentiality of data subjects, data ownership and control, as well as ensuring fair access and use of data arising from the creation and use of the first-of-its-kind relational sequencing data platform housing globally representative data on Mtb drug resistance.

Ethics of Imaging: mHealth is an emerging and innovative field that presents promising applications for public health through the use of wireless technologies. IEPI is providing advisory support and evaluation of the ethical challenges of leveraging consumer-level smartphone imaging for point-of- care diagnostics in low-resource settings.

Data sharing during a public health emergency: Sharing data during a public health emergency is critical for rapid response and decision making, however the global public health community lacks a robust understanding of the barriers to data sharing during such a crisis. IEPI is working with partners from the Wellcome Trust to retrospectively examine and understand the ethical challenges and enablers, if any, that facilitate the sharing of data during public health emergencies.