From: Responsible data sharing in a big data-driven translational research platform: lessons learned
Condition | Challenge | Action point |
---|---|---|
Data sharing is only allowed for … | ||
Scientific research | What kinds of questions, areas of research and motives are acceptable? | Establish the scope of scientific research questions that may be addressed |
In anonymized or coded form | In case full anonymity cannot be guaranteed, can data still be shared? If yes, on what grounds and how? | Establish how to deal with varying levels of de-identification |
After approval from a review committee and with acceptance of security measures | When and how should review committees operate in the context of Big Data-driven research platforms? | Establish the role and responsibilities of review committees |
In compliance with applicable laws, rules and regulations | Laws, rules and regulations may offer different interpretations of data sharing | Establish what laws, rules and regulations mean by data sharing |
– | Documents may permit “conditional data sharing with third parties” without specifying these conditions | Establish how to deal with datasets that do not have a system in place for (international) data sharing |