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Individuals are to be informed about the extent to which confidentiality of their data will be maintained during all phases of the study, including who will have access to the data, what security measures will be used, and where data will be stored. Content created by office for human research protections (ohrp) content last reviewed march 21, 2025 Follow the below guidelines to protect the research participants’ privacy during screening, consenting, and conducting the research
Conduct research procedures in person and in a private setting. O carefully consider the appropriate circumstances and setting for participant recruitment, enrollment, and data collection. Between privacy and confidentiality, confidentiality is arguably the more important one in research
While privacy is easily assured with proper consent procedures, confidentiality of data takes more effort to maintain.
The proper management of study data, including clearly defined and strictly followed procedures to protect the confidentiality of study participants, can significantly reduce the possibility of such breaches and must be part of every study design. The irb must consider both privacy and confidentiality for the entire duration of the study, and the maintenance of research records once the study finishes These are discussed in detail in the human subjects protection module that has been developed by citi. When thinking about privacy and confidentiality in the research context, distinctions should be made between the two issues
Privacy refers to persons and to their interest in controlling access of others to themselves. This guidance will assist researchers in understanding how “privacy” differs from “confidentiality”, the relationship of such concepts to each other, and strategies to safeguard each of those two concepts in the context of human participant research. Privacy in research refers to protecting the individual’s right to control access to their participation in a study (i.e., extent, timing, circumstances)
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