GloPID-R Principles for Data Sharing in PHE, 2. May 2017

GISAID's Comments on GloPID-R
Principles for Data Sharing in Public Health Emergencies


Dear Members of the Data Sharing Working Group,

Thank you for the opportunity to comment on the comprehensive document “Principles for Data Sharing in Public Health Emergencies”. It is gratifying to read that the seven key principles of GloPID-R are nearly identical with the principles underlying the GISAID Initiative (a Global Initiative on Sharing all Influenza Data). As was the intent of GloPID-R more generally, GISAID was implemented specifically to promote the rapid sharing of essential data in response to an emergent public health emergency, spurred on by the H5N1 bird flu threat and virus sharing controversy. As not all members of the Data Sharing Working Group may be aware of GISAID and what it represents, please allow us to explain in more detail below.

The timely, ethical, equitable and transparent sharing of high quality influenza data have been hallmarks of GISAID. For the past 9 years, this initiative has provided freely accessible influenza data for the benefit of the global scientific, research and public health communities while increasing trust among and between data providers and users by fostering acknowledgement of data and sample contributors. GISAID thus represents a prime example of what can be achieved in by promoting sharing of virus genetic data and associated epidemiological and clinical data critical for identifying and responding to influenza health emergencies such as outbreaks and pandemics.

The recent paper by Elbe and Buckland-Merret in Global Challenges1 clearly describes the stimulus and the extent of collaborative effort in engaging the complementary expertise required and the hurdles to be overcome in establishing the GISAID Initiative, and subsequently gaining acceptance by and trust of the influenza scientific community and confidence of governments around the world. Its effectiveness was highlighted by GISAID’s role in facilitating sharing sequence data of the first human cases of the 2009 influenza H1N1 pandemic2 and of the H7N9 outbreak in China in 20133. Influenza data from these two and many other influenza outbreaks have been communicated immediately to the world community for effective risk assessment and response to the threats. In addition, data provided to GISAID allowed the collaborative application of advanced synthetic biology techniques to rapidly prepare a candidate influenza vaccine virus for the first time in response to the 2013 H7N9 outbreak.

The success of GISAID has the advantage of some of the unique features of influenza, not least was the ability to build on the long-established ethos of virus and information sharing and research collaboration of the WHO’s Global Influenza Surveillance and Response System (GISRS). GISRS is notable because it has been supported nationally by governmental agencies and has provided a wealth of information that has contributed to fundamental research and knowledge on influenza over the past 70 years. 

GISAID not only represents the principles of data sharing but also lends credence to a pragmatic approach for their implementation, achieving the confidence of providers and users of data alike in creating an acceptable trust-based mechanism, which could become part of a more broadly based [established]# modus operandi for the benefit of the global scientific, research and public and animal health communities.

While an European Commission-funded programme, PREDEMICS (Preparedness, Prediction and Prevention of Emerging Zoonotic Viruses with Pandemic Potential using Multidisciplinary Approaches)4 has embraced application of the GISAID sharing mechanism to other viruses, Hepatitis E virus, Japanese encephalitis virus, Lyssaviruses (e.g. Rabies) and related Flaviviruses (e.g. yellow fever) and extended to include Ebola and Zika, funding to sustain development of the necessary platforms is not readily available. It is to be hoped that the GloPID-R initiative will lead to a more realistic understanding of the requirements for and provisions necessary for sustaining these objectives. 

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1 Elbe, S., and Buckland-Merrett, G. Data, disease and diplomacy: GISAID's innovative contribution to global health. Global Challenges, 1: 33–46 (10 January 2017) doi:10.1002/gch2.1018
2 Schnirring, L. Pandemic reveals strengths of new flu database. Center for Infectious Disease Research and Policy (25 June 2009) see www.cidrap.umn.edu/
3 Editorial The Fight Against Bird Flu. Nature 496, 397 (25 April 2013) doi:10.1038/496397a
4 Project ID: 278433 Funded under: FP7-HEALTH, see www.europa.eu/predemics/

       
GISAID Comment