Researchers and their teams need to be aware of the policies and processes, both ethical and legal, to which their research data must comply. It is recognized that there may be cases where certain data cannot be made public for various policy or legal reasons. In these instances, consider whether de-identifying your sensitive data is possible and would allow safe sharing. Also consider publishing metadata, without making the data itself openly accessible, which enables restrictions and conditions to be placed on accessing the data.
For research projects involving human participants and human biological materials, these decisions must align with UVic's Human Research Ethics requirements.
Data Protection Terms
|Anonymization||Irreversible removal of the link between the individual and his or her medical record data to the degree that it would be virtually impossible to reestablish the link.|
|Removal or replacement of personal identifiers so that it would be difficult to reestablish a link between the individual and his or her data.|
|Generalization||Process of creating successive layers of summary data in a database.|
|Pseudonymization||Identification data is transformed and then replaced by a specifier that cannot be associated with the data without knowing a certain key.|
Source: Kushida, C. A., Nichols, D. A., Jadrnicek, R., Miller, R., Walsh, J. K., & Griffin, K. (2012). Strategies for de-identification and anonymization of electronic health record data for use in multicenter research studies. Medical care, 50 , S82–S101. https://doi.org/10.1097/MLR.0b013e3182585355
Data Anonymization Tools
Researchers may consider use of algorithm-based tools to help anonymize their data and reduce the risk of reidentification. A range of open source software is available.
Managing and sharing sensitive data can prove to be a complex undertaking that requires skill and expertise. Consult the following resources to start learning more about how to share sensitive data responsibly.