Ethics Context

Privacy and confidentiality are recognized as fundamental human rights. Almost all research ethics guidelines have requirements for protection of informational privacy. By providing free and informed consent to participate in research, research subjects allow researchers to use data about themselves for defined purposes.

Research in some fields depends on the use of already-existing data about people. These data, which can be linked to individuals, are contained in records collected for another purpose. These include academic records held at schools and universities, hospital and laboratory records, employee records, and birth and death certificates. Possible secondary use of data cannot always be predicted at the time that data are collected. As a consequence, consent for use of data beyond their original purpose may not have been obtained. In such cases, protection of the rights of the research subjects to privacy and confidentiality has to be balanced against society's need for research.

What counts as loss of privacy may vary from individual to individual and society to society. Also, the concepts of rights to privacy and confidentiality may be less applicable in other cultures.