Human Frontier Science Program - Support for

National Human Genome Research Institute

Investigators

Abstract

BACKGROUND Over time, biomedical data resources have grown in both size and complexity, requiring substantial ongoing financial support from research funders such as NHGRI and other components of NIH. Meanwhile, as biomedical research increasingly becomes data-intensive, researchers from around the world continue to increase their dependence on these data resources, with some resources accessed by millions of users each month. Unfortunately, the funding for these resources is not unlimited. In many cases, the scientific leaders of these data resources have encountered the realities of finite and highly demanded research funds, revealing the “fragile nature” of their funding support. Worse yet, there was previously no organized and robust way for international funders of biomedical research to coordinate support for this vital data ecosystem, risking its long-term sustainability. To address these concerns, the NHGRI Director co-led an effort to establish a new organization – the Global Biodata Coalition (GBC; see https://globalbiodata.org/) – a group of research funders that are now working to understand the global biodata resource infrastructure and to move towards more internationally coordinated, sustainable, and streamlined mechanisms that support the biodata ecosystem. The GBC is currently supported by 11 public and charitable funders (including NHGRI on behalf of NIH) from three continents and has established a formal governance structure. Funds to support GBC’s activities are managed by the International Human Frontier Science Program Organization (HFSP). The GBC is now actively: (1) conducting an inventory of the world’s biodata resources, which will provide a better understanding of the composition and characteristics of the complete set of such resources; (2) overseeing the identification of an initial set of the most widely used and key biodata resources (likely <50) that will be designated as Global Core Biodata Resources and will become the focus of more-intense attention in exploring sustainability options; (3) investigating how international coordination of open-access data policies could be better coordinated, supported, and implemented at a global level; (4) exploring ways that funders in different countries can better coordinate their efforts, so as to ensure the long-term sustainability of biodata resources; and (5) establishing an international biodata resources forum that will be regularly convened via plenary meetings (once international travel resumes more broadly). The NHGRI Director serves as the primary liaison (and NIH representative) with the GBC, the NIH leadership is kept appraised of GBC activities through updates provided to the Scientific Data Council (which reports to the NIH Steering Committee). ANSWERS TO SPECIFIC QUESTIONS 1. Who is working with the secretariat? The HSFP-hosted secretariat works with all components of the GBC. This includes all the research funders who are participating in the GBC (e.g., NIH in the US and the Wellcome in the UK). The secretariat is responsible for organizing all of the GBC’s activities, including the five specific ones listed above. They will soon be working with the leaders of the Global Core Biodata Resources, once identified; this will include organizing working groups and plenary meeting. 2. Why are they providing support? Funders (like the NIH) are providing support to the GBC because of the importance of the problem outlined in the first paragraph above and the previous lack of any coordinating body at an international level. Funders are supporting the GBC because they see it as a solution that will provide better stewardship of the biomedical data ecosystem. 3. What will be done with the support provided? The support will pay salaries/benefits of the HSFP-hosted secretariat staff (including a newly recruited Executive Director), travel for that staff, and logistical support for working groups and plenary meetings. 4. How will we know deliverables or support was effectively used? GBC has a Board of Funders, consisting of a representative from each funding agency supporting the GBC. The Director, NHGRI is NIH’s Representative on this Board. That Board will oversee the entire GBC operation, including the effective use of funds provided to the secretariat for conducting their responsibilities. 5. Where does any reporting or confirmation of work go to show what was done with the funds. The GBC will be regularly providing the Board of Funders with financial statements showing how their funds were spent and progress reports that detail what the HSFP-hosted secretariat (and the broader GBC network) has accomplished. These summaries will be discussed on a regular basis by the Board of Funders, who are the ones with fiduciary responsibility for support provided by their funding agency. This level of scrutiny will ensure the effective use of funds provided to the HSFP-hosted secretariat.