Infectious diseases data and sample sharing: Perspectives on ethics and governance
Infectious diseases data and sample sharing has received increasing attention following recent outbreaks such as the Ebola outbreak in West Africa. However, relatively little attention has been paid to the ethical issues encountered in data and sample sharing in public health emergencies and infectious diseases, and there is a lack of ethics guidance or frameworks in the international arena. Given the particular nature of infectious diseases, and their required response, an empirically grounded understanding of the ethical issues, and role of ethics governance would help identify considerations for ethics frameworks.
The aim of this study is to identify and analyse the ethical issues, and assess the role of ethics governance, in relation to infectious disease data and sample sharing from low resource contexts. Semi-structured interviews will be used to understand how those involved in 'real world' data and sample sharing initiatives identify and seek to account for identified practical ethical considerations.