Privacy refers to persons and their interest in controlling access to themselves. Confidentiality refers to maintenance of the investigator's agreement with the participant about how the participant's identifiable private information will be handled, managed, and disseminated. Privacy refers to persons; confidentiality refers to data.

Privacy. People have an interest in controlling access to themselves, including:

• the time they give information (certain times are emotionally significant, such as shortly after giving birth, or shortly after being informed of being HIV positive, and people have an interest in limiting other’s access, or being protected from intrusions from others, during such times).
  • For example, describe the time of study visits (do people make appointments? are people called at home in the evening?)
• the place they give information (people have greater expectations of their ability to control access, and be free from unwanted intrusions, in certain places, such as homes, or in healthcare clinics. Even in public areas, people retain expectations about privacy; for example, that others will not draw attention to them; that they will not be followed, or watched, or photographed using telephoto lenses; or monitored while entering or leaving private places (such as bars or office buildings); and that others will not eavesdrop on communications or use sensitive microphones to monitor public areas, or monitor electronic communications (for example by wiretapping or monitoring computer networks—though this may be an expectation that data will be protected; see confidentiality).
  • For example, describe the location where research will be conducted and consent obtained (for example, in a private room, where no one can overhear discussions, or in a public area).
  • For example, describe steps taken to minimize the chance that study participants will see other study participants, or be seen by others, particularly if participation in research may pose stigma.
• the nature of the information they provide (people expect they will not be forced to disclose information, or that information they provide about themselves will not be disclosed to others). People expect that information they consider private—which may vary depending on the person or group—will be protected.
  • For example, if you might get information from participants in research that you are required to report to government officials (like child abuse or infectious disease status), then make sure the participants in research understand at the beginning that you may not be able to protect their privacy.
• the nature of research experiences that are provided to them; people have an expectation that they will be given an opportunity to know what will happen during research. Describe how you will recruit and contact participants, and what the nature of their experience will be.
  • For example, describe how you will contact participants by telephone or email and preserve their privacy (for example, by not leaving a message on an answering machine, or by asking the participant what kind of contact is appropriate outside the research setting).