Confidentiality & Ethics

Confidentiality & Ethics

Human Subjects

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 are subject to mandates to share data derived from confidential data may want to consider the following:

  • Include a provision for sharing of de-identified results when obtaining informed consent of research participants.  ReDATA's policies for sharing human subjects research provide an example of a consent form with a provision for data sharing (see the "De-identified Data Associated With Human Subjects Research" in the policies document and the IRB's consent templates). 
  • 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
Data Use Agreements

A data use agreement (DUA) must be obtained before transmitting or receiving certain kinds of data (e.g., data containing protected health information - PHI). Refer to the HIPAA Privacy Program's page on DUAs. 

A PI does NOT have signatory authority to sign data use agreements, even if they are the ones who collected the data. Only the Contracting Services office has such authority.

More resources

Restricted Data

Certain projects deal with information that may be regulated. Examples include EAR, ITAR and controlled unclassified information (CUI). UA provides specialized support for projects through various offices

See the RII FAQ on export control for more information.

Indigenous Knowledge

Information about indigenous lands, people, or traditions is considered Indigenous Knowledge. Before collecting or disseminating such information, it is important to work with the appropriate institutional and tribal offices.