IRB-Privacy and Confidentiality

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

Privacy, or controlling the extent, timing, and circumstances of what one shares, can breach 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 one gathered private information without the subject’s knowledge, while they cannot ensure privacy they may discuss after the study. 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, one can protect a participant’s privacy by taking appropriate data collection measures and reviewing research questions for privacy concerns. However, the researcher must determine the reasonable assumption of privacy on a case-by-case basis, as nuances exist in these concepts. This happens because what seems like private information in some situations may not be problematic to share in others, such as medical or income information.

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