Private Information and Invasion of Privacy
Private information
includes information about behavior that occurs in a context in which an
individual can reasonably expect that no observation or recording is taking
place, and information which has been provided for specific purposes by an
individual and which the individual can reasonably expect will not be made
public (for example, a medical record). Private information must be individually
identifiable (i.e., the identity of the subject is or may readily be ascertained
by the investigator or associated with the information) in order for obtaining
the information to constitute research involving human subjects.
Invasion of privacy is a risk of a somewhat different character. In the
research context, it usually involves either covert observation or "participant"
observation of behavior that the subjects consider private. The IRB must make
two determinations: (1) is the invasion of privacy involved acceptable in light
of the subjects' reasonable expectations of privacy in the situation under
study; and (2) is the research question of sufficient importance to justify the
intrusion? The IRB should also consider whether the research design could be
modified so that the study can be conducted without invading the privacy of the
subjects.
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