Nature
Volume 518 Number 7540 pp456-568 26 February 2015
http://www.nature.com/nature/current_issue.html

Nature | Comment
Data sharing: Make outbreak research open access
Nathan L. Yozwiak, Stephen F. Schaffner& Pardis C. Sabeti
25 February 2015
Establish principles for rapid and responsible data sharing in epidemics
Last April, five months into the largest Ebola outbreak in history, an international group of researchers sequenced three viral genomes, sampled from patients in Guinea1. The data were made public that same month. Two months later, our group at the Broad Institute in Cambridge, Massachusetts, sequenced 99 more Ebola genomes, from patients at the Kenema Government Hospital in Sierra Leone.

We immediately uploaded the data to the public database GenBank (see go.nature.com/aotpbk). Our priority was to help curb the outbreak. Colleagues who had worked with us for a decade were at the front lines and in immediate danger; some later died. We were amazed by the surge of collaboration that followed. Numerous experts from diverse disciplines, including drug and vaccine developers, contacted us. We also formed unexpected alliances — for instance, with a leading evolutionary virologist, who helped us to investigate when the strain of virus causing the current outbreak arose….

…In an increasingly connected world, rapid sequencing, combined with new ways to collect clinical and epidemiological data, could transform our response to outbreaks. But the power of these potentially massive data sets to combat epidemics will be realized only if the data are shared as widely and as quickly as possible. Currently, no good guidelines exist to ensure that this happens….

…The Kenema way
As a first step, we call on health agencies such as the World Health Organization, the US Centers for Disease Control and Prevention and Médecins Sans Frontières, as well as genome-sequencing centres and other research institutions, to convene a meeting this year — similar to that held in Bermuda in 1996. Attendees must include scientists, funders, ethicists, biosecurity experts, social scientists and journal editors.

We urge researchers working on outbreaks to embrace a culture of openness. For our part, we have released all our sequence data as soon as it has been generated, including that from several hundred more Ebola samples we recently received from Kenema. We have listed the research questions that we are pursuing at virological.org and through GenBank, and we plan to present our results at virological.org as we generate them, for others to weigh in on. We invite people either to join our publication, or to prepare their own while openly laying out their intentions online. We have also made clinical data for 100 patients publicly available and have incorporated these into a user-friendly data-visualization tool, Mirador, to allow others to explore the data and uncover new insights.

Kenema means ‘translucent, clear like a river stream’ or ‘open to the public gaze’9. To honour the memory of our colleagues who died at the forefront of the Ebola outbreak, and to ensure that no future epidemic is as devastating, let’s work openly in outbreaks.