Privacy for research participants is a concept in research ethics which states that a person in human subject research has a right to privacy when participating in research. Some typical scenarios this would apply to include, or example, a surveyor doing social research conducts an interview with a participant, or a medical researcher in a clinical trial asks for a blood sample from a participant to see if there is a relationship between something which can be measured in blood and a person's health. In both cases, the ideal outcome is that any participant can join the study and neither the researcher nor the study design nor the publication of the study results would ever identify any participant in the study. Thus, the privacy rights of these individuals can be preserved.
Privacy for medical research participants is protected by several procedures such as informed consent, compliance with medical privacy laws, and transparency in how patient data is accumulated and analyzed.[1]
People decide to participate in research for any number of different reasons, such as a personal interest, a desire to promote research which benefits their community, or for other reasons. Various guidelines for human subject research protect study participants who choose to participate in research, and the international consensus is that the rights of people who participate in studies are best protected when the study participant can trust that researchers will not connect the identities of study participants with their input into the study.
Many study participants have experienced problems when their privacy was not upheld after participating in research. Sometimes privacy is not kept because of insufficient study protection, but also sometimes it is because of unanticipated problems with the study design which inadvertently compromise privacy. The privacy of research participants is typically protected by the research organizer, but the institutional review board is a designated overseer which monitors the organizer to provide protection to study participants.