The REB’s role is to ensure the protection of the research participant’s privacy. Note that ethical concerns regarding privacy will decrease the more difficult it will be to identify to whom the information belongs to. The constitution of a data bank for the purpose of future research raises some specific issues, thus the ethical review process will determine the level of risk for participants by evaluating the following elements:
- The possibility of identifying (re-identification) the participants by associating data
- The type of the information which will be saved in the databank (with identified, coded or anonymous data)
- The potential damage for the participants during the access, the transportation (transfer agreement), the use and the disclosure of the data
- The authorization for secondary analyses (link with the owner/in charge of the bank) or the coupling of data with other sources (ex. another bank)
- The retention period of the bank as well as the destruction of data and the bank
- The procurement of an informed consent.
The REB will refuse all requests of use of these data or the biological material if the objective of the research does not respect the expressed wishes of the participants or if it does not respect the principle of human dignity. When the data of the bank is anonymous (when impossible to make identification) it is not necessary to obtain a consent form because participants can’t be identified. However this would not apply if there is coupling of data.
The REB ensures that the databanks (data and biological material) already existing are complying with the current ethical standards at the time of their constitution and as possible, with the current standards.
Creation and use of data bank and human biological materials