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The Data Tags Suite (DATS) model for discovering data access and use requirements

BACKGROUND: Data reuse is often controlled to protect the privacy of subjects and patients. Data discovery tools need ways to inform researchers about restrictions on data access and re-use. RESULTS: We present elements in the Data Tags Suite (DATS) metadata schema describing data access, data use c...

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Detalles Bibliográficos
Autores principales: Alter, George, Gonzalez-Beltran, Alejandra, Ohno-Machado, Lucila, Rocca-Serra, Philippe
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7006671/
https://www.ncbi.nlm.nih.gov/pubmed/32031623
http://dx.doi.org/10.1093/gigascience/giz165
Descripción
Sumario:BACKGROUND: Data reuse is often controlled to protect the privacy of subjects and patients. Data discovery tools need ways to inform researchers about restrictions on data access and re-use. RESULTS: We present elements in the Data Tags Suite (DATS) metadata schema describing data access, data use conditions, and consent information. DATS metadata are explained in terms of the administrative, legal, and technical systems used to protect confidential data. CONCLUSIONS: The access and use metadata items in DATS are designed from the perspective of a researcher who wants to find and re-use existing data. We call for standard ways of describing informed consent and data use agreements that will enable automated systems for managing research data.