The Law and Ethics of Data Sharing during Infectious Disease Emergencies

Abstract

During the 2012 MERS-CoV outbreak and 2014-15 Ebola public health emergency in West Africa, a number of legal and ethical barriers impeded the flow of relevant data especially that related to diagnostics, therapeutics and vaccines. This article represents a brief summary of the data sharing barriers identified through a project funded by the Wellcome Trust and Global Research Collaboration for Infectious Disease Preparedness. It analyzes the specific legal and ethical barriers confronted by aid workers, researchers, non-governmental organizations, funding agencies, and governments and recommends measures to address those barriers focused on governments, funding organizations, and medical organizations.

Keywords: bioethics, data sharing, public health emergency, research ethics