Content
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What kind of data and/or materials are stored in the database/bank?
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Personal data relationships
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Can relevant demographic and familial relations be inferred directly from the data? (eg, genetic and genomic data sets, genealogical databases, etc.)
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Intended uses of the data
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Is the primary intended use of the data biomedical research, or something else? Does data use aim to create public benefits? What are the commercial stakes and interests?
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Security standards
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What are the security standards (eg, cloud-based databases with data located at participating institutions; data centralized in data safe havens; access control policy)?
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Actual uses of the data
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Who is using the data, and for what purposes?
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Mode of governance |
Who can populate the database? Who can access data? Who decides on access? Is there transparency on these decisions, and on how these decisions are made? |