How do you protect indigenous and traditional participants data and ensure security, privacy, and confidentiality?
We have taken all reasonable steps to implement multiple security layers in the project. First, the project is based on the principle of anonymity—both for groups and individuals. We will not share the names of communities or individuals participating in the project unless they choose to do so. All samples from indigenous and traditional peoples will be coded by the regional centers and then recoded when the results are received. Only recoded data will be accessible in the central database. The link between the locally assigned code and an individual’s name will be kept on file in the region, so that the central database cannot connect the two without local involvement. The alphanumeric codes were developed using an IBM algorithm to increase the level of security. The actual informed consent forms do include the names of the participants and are maintained at the regional center under lock and key. They are maintained separately from the actual coded samples in a secure location. Secon
