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Chris Gorgolewski (Max Planck Institute for Human Cognitive and Brain Sciences)

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Furthermore, I agree that my anonymised data may be made available to a central MRI data centre. A data centre is an Internet server for anonymised MRI data and makes published image data accessible to researchers around the world. This allows further supplementary processing and repeated analyses. It also serves the purpose of making the results more transparent and accelerating the progress of research in the brain sciences. Some scientific journals already make the on-line availability of data a prerequisite for publication.

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Pierre Bellec Apr 8, 2014

Thanks for sharing the template ! I tried to get such a paragraph in a consent form three years ago, and after one year of discussion with the IRB I had finally to remove it. I found that at least at my institution it is very important to describe the data repository, data use agreement and anonymization strategy (as well as other variables shared in addition to imaging) in order to get approval.

Michael Hanke Apr 8, 2014

Thanks! That adds some facets that I haven’t used in mine before. Another aspect that I found necessary is to inform participants that data is actually accessible by anyone, not just scientists – this avoids concerns regarding access permissions and authentication. Moreover, at least in Germany participants can change their mind on the data sharing permission and can ask for their data to be removed from a database – even if it may not have an actual effect on privacy once data were out in the open. Lastly, I can confirm that information on what kind of data are shared is important, and at least a rough idea what kind of anonymization strategy is used. Ah and, not giving permission to share data must not lead to “disadvantages” for a person – this is mandated by law in Germany. Not sure what this means in the context of a scientific study, but I would not exclude a participant solely based on his or her unwillingness to share data.

Cyril Pernet Apr 9, 2014

In UK it’s getting crazy. For our data bank we are planning de-identification ie face and ear removal and or scrubbing, you know is case your insurance compagny decides to make 3d models of data, recognize you, and found something weird in your brain that our radiologists and neurologist haven’t seen before ...