Since our last update, pathogen data sharing has continued to be a prominent topic of discussion as experts and non-experts voice their opinions, including about GISAID itself. Because of the ongoing spotlight and risk of confusion, we’ve shared some useful information, below:
Dispute resolution between data users and data contributors
The GISAID database access agreement (DAA) applies to all users equally. Any complaints GISAID receives about potential violations of the DAA are promptly addressed by our professional compliance team to uphold the sharing mechanism and the confidence of its data contributors. In rare cases, when the extend of a breach cannot be mitigated and no contact can be established with the relevant parties, database access may temporarily be halted. During GISAID’s near 15-year history, parties generally resolved issues together and charted a path forward without further involvement of GISAID. Until recently, it was unprecedented that parties did not assist in solving what in almost all cases can be resolved in a dialogue between data users and the data contributors.
Contributions and funding
With the onset of the pandemic, GISAID was fortunate to receive the support of new grantors and donors to help fulfill its mission. As a result, we brought on seasoned, full-time professional personnel and tapped external experts to meet these funders’ rigorous reporting requirements. Since then, GISAID continues to receive support from donors and grant makers and remains subjected to ongoing reporting and due diligence, including equivalency determinations required for public charities. GISAID thus remains well-positioned to continue its mission of providing not only incentives but equity to data contributors who are too often marginalized. Importantly, GISAID draws its strength from public-private partnerships thanks to substantial in-kind contributions from governmental and public institutions alike.
Governance
Due to GISAID’s rapid scaling of its global operations we needed to prioritize focus on overcoming technical challenges of handling and providing uninterrupted access to historic volumes of genomic data complete with actional public health insights. Consequently, governance matters were not able to timely adapt in ways that structurally reflected the new operational reality brought on by the rapid changes the Initiative experienced. This included expanding our team to more than 50 professionals in 18 different countries, many of which are embedded in established public health or research organizations. GISAID’s activities began in Germany in 2006, and a few years later founded a non-profit association (Freunde von GISAID e.V.) as the Initiative’s success continued to grow. Today, the association's key role remains that of a network facilitator that brings together both public and private partners around the world. This horizontal organizational network of partnerships is woven together via a common thread – the GISAID Initiative – in pursuit of its mission to promote the rapid sharing of data from priority pathogens.
Privacy of individuals
GISAID both safeguards the right to privacy of all its users under GDPR, and protects the right to privacy of its staff and volunteers. Considering recent inappropriate media inquiries made directly to GISAID’s staff and volunteers, and their family members, we respectfully ask that any future press queries be directed to GISAID’s media contact only.
Thanks to the iterative feedback from data contributors and users during the past 15 years, GISAID has emerged as the go-to platform for tens-of-thousands of researchers to share, collaborate, and analyze pathogen data. GISAID provides data contributors with a choice – one that allows data contributors to share their data in a transparent manner in a way that preserves their inherent rights, instead of doing so anonymously via conventional data archives where their rights are extinguished.
