In July, we provided guidance on how to de-identify human subject data. This month's topic focuses on consent language, which allows you to share data in the future.
Research involving human subjects requires consent from potential participants. A consent form template provided by the Institutional Review Boards (IRB) often is used. The Office for the Protection of Research Subjects (OPRS) at the University of Illinois at Urbana-Champaign provides templates that makes clear whether participant data will be used in future research. See below for an image of the OPRS informed consent.
The scope of each study differs, so templated language may not be appropriate for all studies. Any change in protocol requires re-consenting participants, especially if you choose the option that data will not be used or distributed for future use.
Data sharing requires forethought when dealing with human subject research. Selecting the right option now will save your participants - and you! - hassle later.
For more questions about consent forms and research protocol, contact the Institutional Review Board (IRB) at email@example.com or call 217-333-2670