Approved by: Human Protections Administrator, Director of OPRS, and Executive IRB Chair
AAHRPP REF#: 159
AAHRPP Elements: II.3.D
- The term “privacy” refers to an individual and their desire to control the access that others have to them .
- In contrast, the term “confidentiality” refers to the investigators agreement with the subject on how a subject’s data will be handled, managed, and disseminated. (Refer to UIC HSPP policy Approval Criteria: Confidentiality to compare privacy versus confidentiality).
- Investigators are ultimately responsible for protecting the privacy interests of the research subjects in accordance with UIC HSPP policies and procedures, and for providing an accurate description of privacy protections in the appropriate forms, appendices, and applications submitted to UIC OPRS and the IRB.
- What is private varies among individuals according to race, gender, socioeconomic group, age, education, sexual orientation, ethnicity, and the relationship between subject and researcher.
- Privacy concerns are criteria that the IRB must consider, when appropriate, before approval of research. The IRB ensures that the researcher has adequate provisions in place to protect the privacy interests of research subjects. The IRB members use the appropriate review guide/s to evaluate whether the investigator has an adequate process in place to protect subject privacy interests for all types of IRB review transactions.
- Managing privacy concerns depends on the population and context Examples of privacy interests that subjects might want to control, depending on the population and context, are
- The time and place where they give information;
- The nature of the information they give;
- The nature of the experiences that are offered to them;
- Who receives, and can use, the information, once given.
- The approach taken by the IRB to manage privacy will differ from protocol to protocol. Some examples of the appropriate management of common privacy concerns are the following:
- Ensuring that the consent process is conducted in a private location by appropriately trained personnel.
- Changing the location of the meeting place or research location if subjects might not want to be seen in a place that stigmatizes them (i.e., a location with signage that clearly announces information that a subject may want to keep private, such as a health issue). (Refer to UIC HSPP policyLocal Research Context for more information).
- Allowing individuals of the same gender to interview a subject if the subject will be asked questions about their sexual behavior, certain medical conditions, etc. depending on the subject population and context. (Refer to UIC HSPP policies Local Research Context and International Research for more information).
- Requiring that subjects be told that they may refuse to answer any question that violates their privacy or makes them feel uncomfortable.
- Composing discussion groups of the same gender if subjects will be expected to discuss their sexual behavior in a group session, depending on the population and context. (Refer to UIC HSPP policies Local Research Context and International Research).
- Selecting interpreters that live outside of a distinct language population with a small, tight-knit local presence to reduce the chance that the interviewer might know the subject or his or her relatives and friends, depending on the nature of the questions being asked. (Refer to UIC HSPP policiesLocal Research Context and International Research for more information).
- Having a parent present at a research session if a young child is the subject.
- Having the parent absent at a research session if a teen is the subject.
Version (#, date)
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Summary of changes
Policy revised to update approvers and minor language changes.