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A properly designed informed consent is crucial for data reuse. Without it, archiving, sharing, etc may not be possible.
How to
[Sander]
In my opinion the main question isQuestion: what is the specific information that should be in your IC to accomodate for FAIR data and its further usage. So it’s probably about data sharing for further research as well as potential data linkage? So step-wise I would think maybe IC information concerning secondary use of data / materials, potential data linkage to external registries (e.g. PALGA, IKNL)?
Step-wise how about something like:
Check your institute for an IC template
Check whether it allows for “whatever it is we need for making this data FAIR and its sharing”
I know there are factors which depend on the study, like e.g. linkage with PALGA, IKNL, etc.
Does this depend on FAIR Objectives? Does “I want to publish the study in the HRI Catalogue” require something different in an IC than “I want to use your a patient’s data for federated querying?”
The first doesn’t require anything special in the IC I think? Only when the data owner actually wants to share your data does the IC become relevant.?
Is “sharing” by sending someone the data and “sharing via federated querying” different?
If federated querying is anonymous by default, since the data never leaves a center, does IC about sharing the data still matter?
Add these linesMake sure the necessary lines are in the IC
Get the IC approved
FAIRopoly
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