Privacy and Confidentiality

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What is the difference between privacy and confidentiality?

Privacy is the control over the extent, timing, and circumstances of sharing oneself (physically, behaviorally, or intellectually) with others. For example, persons may not want to be seen entering a place that might stigmatize them, such as a pregnancy counseling center clearly identified by signs on the front of the building. The evaluation of privacy also involves consideration of how the researcher accesses information from or about potential participants (e.g., recruitment process). IRB members consider strategies to protect privacy interests relating to contact with potential participants, and access to private information.

Privacy is...

About people
A sense of being in control of access that others have to ourselves
A right to be protected
Is in the eye of the participant, not the researcher or the IRB
Confidentiality pertains to the treatment of information that an individual has disclosed in a relationship of trust and with the expectation that it will not be divulged to others without permission in ways that are inconsistent with the understanding of the original disclosure.

During the informed consent process, if applicable, subjects must be informed of the precautions that will be taken to protect the confidentiality of the data and be informed of the parties who will or may have access (e.g., research team, FDA, OHRP). This will allow subjects to decide about the adequacy of the protections and the acceptability of the possible release of private information to the interested parties. Please note that the federal guidelines do not use the term "anonymous." If you are collecting information and removing identifiers such as names or demographic information, the correct term is "de-identified."

Confidentiality...

Is about identifiable data
Is an extension of privacy
Is an agreement about maintenance and who has access to identifiable data
In regards to HIPAA, protects patients from inappropriate disclosures of "Protected Health Information" (PHI)

Last Updated 8/28/17

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