"Given our modern research setting, with its growing dependence on computers, the Internet, and with the need for databases and registries, protection of an individual’s privacy is now one of the greatest challenges in research."

»Introduction«

All researchers are faced with the difficult challenges of protecting the privacy and maintaining the confidentiality of research participants, whether for biomedical, behavioral, or social sciences research.  A breach of confidentiality violates an individual’s rights and poses a risk of dignitary harm to the research participant, ranging from social embarrassment and shame, to stigmatization, and even damage to social and economic status.  These threats can affect communities as well.

This learning module includes a discussion of the HIPAA Privacy Rule (Health Insurance Portability and Accountability Act of 1996) as it relates to research. However, our goal is not to focus on the Privacy Rule but, rather, to increase awareness of how protecting privacy and maintaining confidentiality in the research setting have become ever more critical, complex, and challenging.  In this module, we provide text, important links, references, and resources. You can view and download the many government resources that address privacy and confidentiality in research by accessing the provided hyperlinks.  Wizard remarks and sidebar comments in the text will enrich the topics.  In addition, we provide important video commentary from experts who are involved, in varied ways, with ensuring that the privacy and confidentiality of research participants are protected and maintained. Review Learning Objectives

Next: Proceed to a series of "Challenge Questions" that will test your understanding of Privacy and Confidentiality or go on to the next section.

Answer Challenge Questions | Next: → Case Study