Research ethics

Ebola-affected communities and other stakeholders have raised a number of concerns and potential barriers to data sharing. Concerns include retaining national jurisdiction on data access decisions, protecting patient privacy, ensuring appropriate consent, potential loss of academic recognition, risk of criticism of the data generators, perceived data misuse, and inadequate sharing of benefits with the communities where data are generated. 

Credit: UNMEER/Martine Perret
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Credit: UNMEER/Martine Perret

We have sought to address these challenges to build a better paradigm for emerging infections research and response. The Ebola Charter sets out our approach to ensuring that these concerns are addressed directly. The Ethics Framework  was designed with broad input, to promote ethical and equitable access to data. Fulfilment of this purpose requires that the individuals and communities from whom data originated be accorded the respect and protection that is due to them, including protecting their rights, safety, and privacy. The theme and data governance structures and technical architecture are designed to address potential inequities and ensure equitable distribution of benefits.