Hello everyone. It seems DUAs are becoming more and more prevalent (including FDP Subaward Attachment 7). Depending on circumstances, it’s not uncommon that my office (charged with handling DUAs) encounters seemingly-contradictory or conflicting
concepts, language, and promises when comparing consent form language signed by participants vs what the institution needs in order to license use of the data out to 3rd parties. Further, based on my group’s own research, we understand that actual
ownership/control of human subjects data is something of a legal gray area. It’s my
assumption that most research institutions take it for granted that the institution owns the data its researcher’s collect (and this would, I take it, agree with most IP policies out there). However, in reading various consent forms, it’s common to encounter
language signed off by participants that tells them, either explicitly or implicitly, that they retain ownership and/or control of their information (“your data”, “your information”, and the like). In some cases, we request that re-consent is gained to make
it clear to participants that the institution intends to make the data/information
collected available to this or that 3rd party. Anyway, I’m hoping to get a general idea from this thread of the following:
-What is your institution’s take on whether or not it claims ownership of human subjects data collected during projects carried out by your investigators?
-If your institution does assume ownership, do you have or employ any sort of template language in consent forms that makes it clear to participants the disposition of data ownership?
-Are there any institutions out there that go so far as to insert actual transfer of ownership or license type language in consent forms?
Thanks in advance for any input you may have.
-Aaron