The Use of Information and Data in Research

Respect for human dignity has been an underlying value of research ethics review since its inception. Respect extends not only to the person but also to his/her personal information. There is widespread agreement about the interests of participants in protection of privacy, and the corresponding duties of researchers to treat personal information in a confidential manner. Indeed, the respect for privacy in research is an internationally recognized norm and ethical standard.

Privacy risks in research relate to the identifiability of participants, and the potential harms they, or groups to which they belong, may experience from the collection, use and disclosure of personal information. Privacy risks arise at all stages of the research life cycle, including initial collection of information, use and analysis to address research questions, dissemination of findings, storage and retention of information, and disposal of records or devices on which information is stored.