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IRB Concerns: Confidentiality/Privacy

Confidentiality and privacy are important aspects of ethical research because a participant ought to have control over whether it becomes public knowledge that they participated in a research study, as well as over the information that they provided while participating in the research. In this context, confidentiality can be thought of as keeping the identity of the participant away from public view, while privacy can be understood as keeping the participant's information away from public view. 

Confidentiality often comes down to one or more ways of de-identifying participants, and privacy often comes down to one or more ways of securing information. Confidentiality may be maintained by:

  • Giving participants pseudonyms
  • Using initials rather than full names
  • Not writing down any identifying information in the first place, even if the researcher knows participant names
  • Arranging to interact with participants in such a way that the researcher never knows the participants' names in the first place; this is sometimes known as anonymity
  • Changing details of the write-up other than just names in order to prevent readers from identifying participants; in some kinds of research it is common to generate a "typical" participant who is not based on any one actual participant but who captures important elements of multiple participants
  • Removing certain demographic information from quantitative research, either temporarily or permanently
  • Using a consent process where a participant consents without their name being captured either on paper or on a recording
  • Destroying identifying information as soon as possible
  • Storing field notes, transcripts or questionnaires that have been purged of identifying information separately from any identifying information (e.g., a day timer with appointment names and addresses)
  • Avoiding the collection or tracking of IP addresses during online research

Privacy can be maintained by:

  • Not leaving questionnaires, interview transcripts, or field notes with participant identifications sitting out where others might see them but rather locking them up
  • Using electronic data security measures to lower the odds that, even if one's laptop is stolen, information on it will be easily readable; this might include password protection, encryption, or other measures

It is important to bear in mind that there are circumstances in which participants want their identities to be known, or are at least neutral about the matter. While IRBs tend to work on the assumption that confidentiality and privacy are the default preference of participants, the researcher should inform the IRB if this is not the case for a given project.