IRB-Privacy and Confidentiality

When reviewing a research design, IRB committee members consider many different rules. One common rule in reviewing is that the privacy and confidentiality of the participants must be reasonably maintained. This means that researchers have an obligation to give the participant control over what and how much information they share (privacy), as well as protecting the information that participants do disclose (confidentiality).

Privacy, or having control over the extent timing and circumstances one shares about themselves, can be breached in many ways. One way is through different research methods, such as observational studies, focus groups, and snowball sampling. Observational studies pose a threat to privacy if private information is gathered without the subject’s knowledge or consent, while focus groups cannot ensure privacy or confidentiality since participants may talk about what was discussed after the study ends. Additionally, privacy invasions occur if the participant finds the study questions to be invasive. Questions about sensitive topics, such as abuse, medication, or sexual behavior, may serve to make the participant uncomfortable and studies that include these types of questions should include a warning in the consent form. Therefore, a participant’s privacy can be protected by taking appropriate data collection measures and reviewing research questions for privacy concerns. However, there are always nuances to these concepts, and the reasonable assumption of privacy must be determined by the researcher on a case-by-case basis. This is because, what is seen as private information in some situations may not be so problematic to share in others, an example of this could be medical or income information.

Confidentiality, on the other hand, is defined as the treatment of information that an individual has disclosed with the expectation that it will not be divulged to others. One simple way of protecting confidentiality is to de-identify participants information or assign numbers to participants to make sure that personal information cannot be traced back to the participant. Additionally, how the data and information will be protected should be outlined in clear writing in the consent form.