IRB APPLICATION HELP:
Privacy & Confidentiality

One of the ways the John Carroll University Institutional Review Board for the protection of human subjects evaluates projects is by the degree of risk to the privacy of the subject. 

The IRB considers these questions for research projects:

		Is there a risk of release of private information because the subject group is too small?
		Are the questions appropriate to the project?
		Who will have access to the data?
		What will happen to the data?
		Who enters the information into the database?
		How will the data be analyzed?
		How will the data be reported?

Listed below is a description of privacy-related topics.

	Confidentiality
	Data is confidential if the researcher can link the data to a particular participant but will protect the privacy of the participant from others.
	Anonymity
	The data is anonymous if there are no identifiers connected to the data and the researcher is unable to link data to any one individual.
	Identifiers
	Identifiers may include gender, religion, birth month, salary range, city of origin, or ethnicity, especially if the subject pool is small. Focus groups cannot be considered anonymous since visual recognition is an identifier. Dissemination of audio tapes is not confidential since voice recognition is an identifier. The JCU IRB strongly discourages the use of social security numbers as identifiers.
	Privacy
	The OHRP online guidebook defines privacy as "control over the extent, timing, and circumstances of sharing oneself (physically, behaviorally, or intellectually) with others." Loss of privacy is considered to be a risk factor.
	Manner of Data Collection
	If the data is of a sensitive nature, the IRB would carefully examine the consent form to ensure that the participant is aware of study design. Projects may collect data in a confidential manner but analyze and/or report it in an anonymous manner, or the data may be collected and analyzed on an anonymous basis. Rarely is data collected, analyzed, and reported with the identity of participants disclosed. The consent form should make these procedures clearly understood. In some cases, the use of a consent form itself may lead to a loss of confidentiality.

Resources on Privacy Issues
	See the U.S. Privacy Act of 1974 (5 USC 552A) .
	See the Federal Trade Commission's page on Identity Theft for more information.
	Sieber, Joan E. "Privacy and Confidentiality: As Related to Human Research and Behavioral Science." Ethical and Policy Issues in Research Involving Human Subjects. Vol. II. Bethesda, MD: National Bioethics Advisory Commission, 2001.

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