Monday, 4 Dec 2023

Global Alliance for Genomics and Health picks 7 data initiatives for 2019

The Global Alliance for Genomics and Health has chosen seven genomic data initiatives from around the world as new Driver Projects for 2019 – projects where researches will work together develop and pilo standards for the sharing genomic and other health data.

Those projects are:

  • Human Heredity and Health in Africa
  • GEnome Medical alliance Japan
  • European Joint Programme on Rare Diseases
  • Swiss Personalised Health Network
  • EUCANCan
  • EpiShare
  • Autism Sharing Initiative

GA4GH officials said they were chosen according to three criteria: global representation, scientific merit and their capacity to contribute in-kind resources to GA4GH development efforts.

GA4GH, formed in 2013, is an international, nonprofit alliance of more than 500 organizations representing patient advocacy, life sciences, IT and others. With the goal of boosting the potential of precision medicine, members of the alliance work together to build frameworks and develop standards to enable the “responsible, voluntary, and secure sharing of genomic and health-related data.”

The group has also developed a five-year plan drive uptake of those standards and frameworks for sharing of clinical-grade data by 2022. These new international driver projects will help the alliance make progress on that goal.

GA4GH also announced that it will expand its work with ELIXIR, a European infrastructure for the management of life science data. The partnership between the two groups will help build capacity in around cloud computing, as well authorization and authentication capabilities, officials said.

“Together, the new projects significantly expand GA4GH’s global representation, strengthening our collaborations across Africa and Europe, as well as in Japan, and adding connections in 31 countries for a total global reach across more than 100 countries worldwide,” said GA4GH CEO Peter Goodhand in a statement.

“Several of the new projects are diverse international collaborations to share data and knowledge across national borders,” added GA4GH Vice Chair Heidi Rehm, of Harvard and MIT’s Broad Institute. “Collectively, these global Driver Projects bring together resources from 94 countries around the world.”

The promise of precision medicine is immense, but its success depends on overcoming some fundamental challenges that have many different root causes, including: the willingness of patients to share their own data, the IT challenges associated with managing voluminous and highly-specific genomic information, the security implications of sharing it among researchers and providers. Efforts such as these and many others are critical to plowing a path forward for personalized care, in the U.S. and around the world.

“Initially a community of like-minded individuals and organizations committed to federated genomic data sharing, GA4GH is now an indispensable, globally representative standards organization,” explained David Altshuler, chief scientific officer at Vertex Pharmaceuticals and founding chair of GA4GH, in a statement. “The new Driver Projects join a community that is building the standards and frameworks that will guide the field for years to come.”

Twitter: @MikeMiliardHITN
Email the writer: [email protected]

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