Most research that involves human subjects requires approval by the University of Minnesota’s Institutional Review Board (IRB). See the IRB website to determine whether an IRB application is required for your project.
Write sharing into your protocol
IRB protocols should maintain participant confidentiality without overly restricting future use of the data.
Things to address:
- What subsets of data will be archived or published?
- How will data be de-identified?
- What, if any, information will be destroyed at the end of the study?
- How may other researchers use the data in the future?
Be transparent about sharing in informed consent
Informed consents or participant agreements should inform participants how their data will be shared. Overly restrictive language will make future sharing or archiving of the data more difficult or impossible later.
Avoid language like:
- "your responses will only be seen by the research team"
- "all data will be destroyed after project completion"
- "your data will only be shared in aggregate form or in statistical tables"
- "We will make our best effort to protect your statements and answers, so that no one will be able to connect them with you. These records will remain confidential. Federal or state laws may require us to show information to university or government officials [or sponsors], who are responsible for monitoring the safety of this study. Any personal information that could identify you will be removed or changed before files are shared with other researchers or results are made public."
- "The information in this study will only be used in ways that will not reveal who you are. You will not be identified in any publication from this study or in any data files shared with other researchers. Your participation in this study is confidential. Federal or state laws may require us to show information to university or government officials [or sponsors], who are responsible for monitoring the safety of this study."
For more information or additional help, contact Liberal Arts Technologies and Information Services or a curation expert.