Human Subjects Review (HSR)

Risk from Loss of Privacy

The researcher and the IRB must consider whether any activity could potentially result in negative consequences for the subject due to loss of privacy, and if the research protocols present more than minimal risk for the release of private information. 

For example, if a study involved collecting information about a student’s personal habits and the data were accidentally made available to unauthorized persons, the research subject could suffer embarrassment and feelings of distress related to the invasion of her privacy. Some breaches of privacy  can have serious consequences for a subject's social standing or their economic livelihood. Information about an individual's medical records can affect insurability and employment. Past criminal activity may impact a subject's employability or status within a community.

Sometimes, the privacy of third parties must also be considered.  Interviews in which subjects disclose private health information about their family members could have serious implications for those family members. Such risks must be mitigate.

Care must be taken that all aspects of a project (e.g., subject recruitment; research interactions and protocols; data collection, storage, and destruction; reporting) are conducted to adequately protect and secure subjects' private information. Assuring subject anonymity or confidentially are essential tools in ethical human subjects research.  To learn more about privacy and confidentiality, review the slide presentation "Privacy and Confidentiality: Issues in Research," by Deanna Talerico at Brown University.