Data Issues to Consider

Confidentiality

It is vital to maintain the confidentiality of research subjects for reasons of ethics and to ensure continued participation in research.  Sometimes, research data resulting from funded research cannot be shared.  There are policies that address this, such as Privacy Rule of the Health Insurance Portability and Accountability Act (HIPAA).

Researchers who want to ethically share sensitive and confidential data may want to consider the following:

  • Include a provision for data sharing when obtaining informed consent of research participants.  U.K. Data Archive Guide provides an example of a consent form with a provision for data sharing. 
  • Protect privacy through anonymizing data
  • Evaluate the sensitivity of your data -- researchers should consider if their data contains either direct or indirect identifiers that could be combined with other public information to identify research participants
  • Obtain a confidentiality review -- some data archives, such as Inter-University Consortium for Political and Social Research (ICPSR), will review your data for the presence of confidential information

Intellectual Property

Your primary asset as a researcher is your intellectual work, it is important to understand and maintain your intellectual property rights.  You will need to articulate how you are providing permissions or licenses in your Data Management Plan.  This may or may not involve intellectual property rights depending on the type of data. 

  • Data is not copyrightable (although a particular expression can be, such as a table or chart)
  • Data can be licensed.  Some data providers license data to limit how the data can be used (to protect the privacy of study participants or guide downstream use of data)
  • If you want to promote sharing and unlimited use of your data, you can make you data available under a CC0 Declaration to make it explicit.  There are other Creative Commons licenses with additional protection.

For more information on Copyright Law and campus policy, contact Dan Lee, Director, Office of Copyright Management & Scholarly Communication. 

The following are some relevant ABOR and University of Arizona policies related to research data, intellectual property, and confidentiality: