NIH and GA4GH commit to ongoing collaboration

14 Feb 2024

NIH and GA4GH strengthen their partnership to expand responsible data use for the benefit of human health through a Memorandum of Agreement.

The United States National Institutes of Health (NIH) Office of Data Science Strategy (ODSS) and the Global Alliance for Genomics and Health (GA4GH) have announced a strategic collaboration in the form of a Memorandum of Agreement. This partnership aims to bolster the development of technology standards, tools, and policy frameworks to support responsible sharing of genomic and related health data on a global scale.

A part of the US Department of Health and Human Services, the NIH funds research to improve human health and outcomes for patients. More than 27 Institutes, Centers, and Offices (ICOs)  make up the NIH, each with its own area of focus. 

In order to maximise the potential value and use of its genomic and health data, the NIH aims to modernise its data science ecosystem and collaborate with scientific communities. The partnership between the NIH and GA4GH aims to do just that, extending an ongoing collaboration that began in 2013.

“To fully realise the promise of genomic medicine, organisations worldwide must continue to commit to the equitable expansion of responsible genomic data use,” said Dr. Eric Green, Director of the National Human Genome Research Institute (NHGRI) at the NIH. “Working together with GA4GH to build technical standards and policy tools can help accelerate collaborative biomedical research, a key NIH aim”

Over the years, the NIH community has played an active role in GA4GH. 

NIH staff and NIH-funded investigators have volunteered technical and policy expertise across many GA4GH products, including protocols for authorising and authenticating researchers, an ontology for labelling datasets with data use terms and conditions, services for executing genomic workflows or tasks, and consent clauses for large-scale initiatives and clinical genomics.

Fourteen GA4GH Driver Projects and initiatives are also funded by the NIH, including the All of Us Research Program, the NHLBI BioData Catalyst,  the NIH Cloud Platforms Interoperability (NCPI) project, the Biomedical Research Hub (BRH), the Human Pangenome Project, and ClinGen.

And the NIH now serves as one of six Core Funders in GA4GH’s Funders Forum, a group that provides financial support, strategic guidance, and high-level consultation on GA4GH activities and direction.

“NIH involvement continues to grow within GA4GH,” said Dr. Susan Gregurick, Associate Director for Data Science and Director of the Office of Data Science Strategy (ODSS) at the NIH. “We aim to bring a more dedicated and concerted effort to support the breadth and complexity of work that is taking place in our community. Doing so will allow us to make our data even more useful and accessible to research and clinical communities.”

The partnership will provide mutual benefits to both the NIH and GA4GH. To coordinate GA4GH activities across NIH Institutes and Offices, the NIH will form a working group to increase awareness of GA4GH activities across the agency, identify and address technical and policy issues, implement GA4GH standards where applicable, and assess Driver Project progress in adopting GA4GH standards. The NIH also aims to host implementation workshops and attend GA4GH meetings to connect with other Strategic Partners and initiatives.

In turn, GA4GH will collaborate with the NIH-wide GA4GH working group to support these activities and ensure that GA4GH products meet NIH’s needs and those of the broader genomics and health community. 

“Over the past decade, the NIH has been a valued partner in our community,” said Peter Goodhand, CEO of GA4GH. “We are incredibly excited to continue growing together to build a global learning health system.”