Library:Research Data/Protect/Privacy and Confidentiality

The privacy of individuals can become an ethical concern when it conflict with the pressure to make data openly available as part of the record of research. It is important to note that privacy and confidentiality are not the same thing. Privacy relates to the individual or subject, whereas confidentiality relates to the actions of the researcher. In general the right to privacy refers to the state of being free from intrusion or disturbance in one’s private life or affairs. Confidentiality has to do with the agreement that is struck between the researcher and the participant about how their identifiable private information will be handled, managed, and disseminated.

• Avoid collecting personally identifying information along with the data if possible.
• If identifying information cannot be avoided, de-identify your data as soon as possible.
• Do not transmit unencrypted data electronically.

Breaking a confidentiality agreement is a major problem that can result in costly punitive measures. Even in the absence of high-level ramifications it compromises the relationship of trust between the researcher and participant. If you are planning to share personal data that you have collected, you must obtain informed consent from your participants, otherwise if must not be disclosed.