Abstract
SummaryThe Global Alliance for Genomics and Health (GA4GH) supports international standards that enable a federated data sharing model for the research community while respecting data security, ethical and regulatory frameworks, and data authorization and access processes for sensitive data. The GA4GH Passport standard (Passport) defines a machine-readable digital identity that conveys roles and data access permissions (called “visas”) for individual users. Visas are issued by data stewards, including data access committees (DACs) working with public databases, the entities responsible for the quality, integrity, and access arrangements for the datasets in the management of human biomedical data. Passports streamline management of data access rights across data systems by using visas that present a data user’s digital identity and permissions across organizations, tools, environments, and services. We describe real-world implementations of the GA4GH Passport standard in use cases from ELIXIR Europe, National Institutes of Health, and the Autism Sharing Initiative. These implementations demonstrate that the Passport standard has provided transparent mechanisms for establishing permissions and authorizing data access across platforms.
Highlights
Genomic and health data research heavily relies on data reuse and analysis beyond the original study’s purpose
A significant challenge to accelerating genomics-based research is the ability of organizations to manage data access processes and verify user identity and permissions
Since its approval as a GA4GH standard in October 2019, the GA4GH Passport standard has been adopted in three ecosystems: ELIXIR infrastructure in Europe, National Institutes of Health (NIH) in the United States, and Autism Speaks
Summary
Genomic and health data research heavily relies on data reuse ( known as secondary use) and analysis beyond the original study’s purpose. Secondary data analyses enable discoveries beyond the original studies and represent a paradigm shift from research that traditionally relied on investigators generating primary data for each research project. This requires data users to discover and potentially combine analyses across available datasets worldwide while adhering to the ethical, legal, and regulatory frameworks, expectations, and requirements that govern data access within organizations and across national and international boundaries. The Global Alliance for Genomics and Health (GA4GH) has driven progress in sharing biomedical data.[1] barriers for data users and data stewards persist in our very connected global community.[2] A significant challenge to accelerating genomics-based research is the ability of organizations to manage data access processes and verify user identity and permissions.
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