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<if applicable> Can we use your data and body material for other research?
Your collected data <if applicable> and your (remaining) body material may also be important for other medical research on [your condition and/or the further development of the product/treatment method]. For this purpose, your data <if applicable> and body material will be stored [in the hospital/research centre/...] for [...] years. Please indicate in the consent form whether you agree with this. Do you not want to give your consent? Then you can still take part in this study. You will get the same healthcare.
Here, it is of the utmost importance that the researcher clearly explains for which purposes collected data/materials may be reused. This may be broader than the original purpose of the study, but not too broad. For example, “cancer research” may be acceptable but “any research” is not. If stored data/material is used for a different purpose, participants must give permission again or usage is not permitted.
<If applicable> We send your data to countries outside the European Union
In this study, we will send your coded data <if applicable> and body material also to countries outside the European Union. The privacy rules of the European Union do not apply in those countries. Choice> But your privacy will be protected at a similar level . OR We ask your permission for this.
SdR: If I read correctly, you only give permission for this study. So my interpretation is that for other research you are never allowed to send the data outside the European Union. Is that correct?
SdR: maybe the full description is a bit overkill; they can look it up in the document.
SdR: Is this a FAIR point? It’s not a about reusing data, is it?
Add these section(s) (tbd) to ensure the SIS allows for FAIR usage of data and materials.
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