Developing Global Norms for Sharing Data and Results during Public Health Emergencies

Among the core functions of the World Health Organization (WHO) are to provide “leadership on matters critical to health” and to shape “the research agenda and stimulate the generation, translation, and dissemination of valuable knowledge” in the interest of global public health [1]. These mandates have converged, of late, in the area of data sharing. In April 2015, the WHO adopted a position on the timely, public disclosure of clinical trial results [2], adding to other calls that nondisclosure of research data must no longer be tolerated. The global norm advocated by the WHO is to release key outcomes of all interventional clinical trials in an open-access, searchable database within 12 months of primary completion. The WHO has since called on sponsors, investigators, journals, and other bodies to do all in their power to implement this standard. Even as this position is becoming widely accepted, it has become Summary Points