IRBs, consent forms and publishing datasets


#1

Hi, all. Our lab is discussing exactly how to obtain informed consent for data which we intend to de-face, de-identify and share publicly.

Some of our European collaborators have been unable to share datasets with us (even after defacing and otherwise obscuring personally identifiable information) because their participants did not explicitly consent to having their data used beyond the very specific original study they participated in.

We’d like to avoid this situation happening to us in the future with our IRB, so I’m curious how other labs phrase their consent language to enable future data sharing.

Do you have a separate consent for data sharing, or another way to “opt out” while still continuing to participate in the main experiment? Do you require consent to future sharing to participate in the experiment at all? (Obviously there are pros and cons of the separate consent. You’ll get to use more subjects in your experiment if there are fewer potential objections, which matters with sensitive/rare participant populations. But your shared data will be less valuable, and it’s a massive hassle to deal with two different processing streams when analyzing and publishing your dataset.)

Thanks for any insights!
Todd


#2

I don’t have the answers to the specific questions you asked (a feel you have a good grasp of the trade-offs), but I can point you to a consent form language for data sharing you can reuse in your studies: https://open-brain-consent.readthedocs.io/en/latest/ultimate.html