The growth of GISAID is owed to laboratory specialists and scientists from both public and private sectors, national authorities - including those in developing countries, and a wide range of other stakeholders. GISAID’s current standing is also the result of continuous feedback and engagement from its global community of data submitters and users.
GISAID previously communicated a review of data-related complaints, involving in particular a small – but vocal group of individuals. During the COVID-19 pandemic response, individuals in possession of GISAID access credentials had asked for extra permissions and a data feed to enable, for example, a dashboard to help communicate the prevalence or visualize the evolution of variants in their region or across the globe. To gain GISAID’s trust, they provided various assurances, promising to abide by the terms stipulated in an agreement entered into with GISAID to safeguard the data against misuse.
Audits, supported by external expertise and guidance from members of GISAID’s Compliance Board, revealed irregularities and identified individuals who have violated their agreed terms. Some of them were found to have considerably encroached on the rights of GISAID’s data contributors, which resulted in the termination of their data feed and the supplementary agreement with GISAID, given their usage had significantly deviated from the manner they promised to make use of the data feed.
Unfortunately, several individuals have created confusion by spreading disinformation in various forums, suggesting, for example, that ‘GISAID cut access without justification.’ These statements mischaracterize the facts that led to the termination of data feeds.
To ensure that the community is presented with a truthful account, GISAID has been encouraged to correct the record. The following are examples where an individual lost their data feed, not their regular access to GISAID, where they may conduct their research like any other user.
GISAID terminated the data feed provided to an evolutionary biologist after it became evident that data from this individual’s feed was made available to persons who had not agreed to GISAID’s terms of use. Moreover, the individual’s personalized credentials to access the feed were given to other individuals, thereby not only breaking the agreement with GISAID, but also significantly undermining the rights of GISAID data contributors and the collective commitment that calls for transparent and equitable access to data.
GISAID terminated a data feed provided to the developers of a dashboard for the tracking of mutations, locations and growth of SARS-CoV-2 lineages after an audit revealed that the data feed was no longer utilized as promised by the developer. While the dashboard had repeatedly been left outdated for extensive periods of times, the data feed from GISAID continued to be accessed. The GISAID Compliance Board reviewed an appeal brought on by the developer and confirmed that “Under the principle of equal treatment GISAID had to terminate as a result of extensive periods of noncompliance." Unfortunately, their engagement with GISAID has been mischaracterized.
GISAID terminated a data feed provided to the developer of a dashboard, who had promised to only visualize aggregate data to monitor new and known SARS-CoV-2 variants. The dashboard, however, offered an interface to an underlying database that permitted – not merely theoretically – the downloading of all unique nucleotide details and metadata of over 17 million viruses obtained through GISAID. In addition, and despite multiple assurances from the developer that no API will be provided, an API was published to allow access in an anonymous manner to the data, thereby undermining the rights of GISAID data contributors. The developer has since mischaracterized the engagement with GISAID.
GISAID terminated the data feed provided to a developer of software for visualizing phylogenomic data, after a review revealed that ‘regional data packages’ generated by the developer and offered through GISAID, were for the most part no longer being downloaded.
However, GISAID confirmed that it would continue to support the developer’s phylogenetic tree published as ncov/gisaid. The developer then disclosed the need to support 56 trees. GISAID indicated its readiness to enable the 56 trees, provided that the developer communicates all necessary criteria for set selection, subsampling and target size for each tree. Although the developer replied “I would like to proceed with your generous offer to have GISAID produce subsampled Auspice JSONs …,” the developer never followed up on the offer, but instead mischaracterized the engagement with GISAID.
GISAID fully supports users to express their opinions, and applauds any effort to raise awareness concerning genomic surveillance and research. In order for any discussion to be productive, however, it must be based on accurate information. Unfortunately, some communications regarding how GISAID operates contain certain fundamental misstatements and omissions that make them dangerously misleading and are ultimately a disservice to the public good.
Irrespective of any vocal group of data users who voice their preference for pathogen data to be made accessible anonymously, GISAID will remain committed to safeguard submitters’ inherent rights and ensure their choice to share with the public in a transparent and equitable manner remains.
Those who wish to utilize data shared through GISAID are reminded that GISAID operates under the principles of equal treatment of all users, irrespective of any scientific credentials.
In recent months, GISAID has become aware that a small group of its users have violated the terms of their access Agreement and misused the data shared via GISAID. Among them are individuals that received GISAID support to operate their own “dashboard” to display aggregate data, but have abused the GISAID data sharing process in violation of the rights inherent to the owners of that data.
Without commenting on specific details, it is important for all GISAID’s users to respect the rights of data generators who made a conscious decision to share their data through GISAID, for the benefit of all and irrespective of their economic resource settings.
As a reminder, GISAID guarantees data generators that their rights in the submitted data will be preserved while that data is made publicly accessible through GISAID’s databases.
As part of GISAID’s responsibilities to the submitters as a custodian of this data, GISAID regularly audits and investigates alleged violations, especially activity that might encroach on the rights of data submitters. GISAID’s governing bodies assist in the review of any results from these audits and investigations.
GISAID remains committed to preserving the inherent rights and fulfilling its custodian responsibility to those entities that submit data to GISAID, where only verifiable, rather than anonymous access to the data occurs.
By ensuring full transparency on the access and use of data, GISAID remains committed to continue safeguarding submitters’ inherent rights, while preserving equitable access to outbreak data to meet the needs of the global community, and not just a select few in economic privileged settings.
