Table 2.
Descriptive dimensions of biobanks and health databases
Category | Questions to be asked |
---|---|
Content |
What kind of data and/or materials are stored in the database/bank? |
Personal data relationships |
Can relevant demographic and familial relations be inferred directly from the data? (eg, genetic and genomic data sets, genealogical databases, etc.) |
Intended uses of the data |
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? |
Security standards |
What are the security standards (eg, cloud-based databases with data located at participating institutions; data centralized in data safe havens; access control policy)? |
Actual uses of the data |
Who is using the data, and for what purposes? |
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? |