In addition to providing protection to the human subjects of research, investigators have ethical and legal obligations, under the federal Common Rule, to protect the privacy of their subjects. Investigators should also communicate clearly to their subjects how they will use and protect private information.
Privacy refers to the control of information about an individual by that individual. The right to control information about one's self is an aspect of autonomy. Further, a legal right to privacy exists in the U.S. based on common law principles. A research subject surrenders a certain level of privacy to researchers by sharing information for a research project. Subjects may relinquish control of the extent, timing, and circumstances of sharing themselves, or information about themselves, with others.
A research subject maintains a certain level of control over the disclosure of information by understanding and agreeing to the ways an investigator will use and provide protection for information gathered through research, as set out in the consent process. In biomedical or behavioral research, the subject often reveals private information to a researcher in exchange for an assurance that the information will be used only for the described research purpose and will not be disclosed outside the study, except to meet regulatory requirements (e.g. requests to the sponsor and FDA). In contrast, in anthropological and historical research, subjects sometimes wish to be identified in any resulting publication or other dissemination of research results.
Investigators should clearly understand what kinds of information may identify individual research subjects or may be sensitive. Unless investigators make specific provisions, UW-Stout's IRB expects investigators to keep research data confidential. Investigators intending to identify research subjects in publications and presentations should indicate this in their research protocols and in their communications with research subjects.