Cell Genomics · 2021 · 31 citations · 15 references
ComputingBiomedical InformaticsHealth InformaticsData EthicsData ManagementHealth Data StandardsData ConfidentialityData ProtectionData SecurityDigital IdentityHealthcare Data StandardsIdentity ManagementAccess PermissionsData AccessData Access CommitteesData Access RightsData Sharing FrameworksFederated Data SharingPassport Data StandardsPermissions
The 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.
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NCBI’s Database of Genotypes and Phenotypes: dbGaP
K. A. Tryka, Luning Hao, Anne Sturcke et al. · Nucleic Acids Research · 2013 · 563 citations · Full text
The European Genome-phenome Archive of human data consented for biomedical research
Ilkka Lappalainen, J. P. Almeida, Vasudev Kumanduri et al. · Nature Genetics · 2015 · 378 citations · Full text
Toward better governance of human genomic data
Kieran C. O’Doherty, Mahsa Shabani, Edward S. Dove et al. · Nature Genetics · 2021 · 65 citations · Full text