What is the regulatory framework governing the secondary use of data from deceased individuals in Canada?
The Personal Information Protection and Electronic Document Act and the Privacy Act are two Canadian federal acts pertaining to the secondary use of information concerning living and dead individuals. Under these acts, a researcher may, in the scope of a study or research, use personal information contained within federal organizations, if he demonstrates that: 1) The study or research cannot be achieved without the use of the data; 2) The information is used in a manner that ensures its confidential nature; and 3) Consent is practically impossible to obtain. Furthermore, the researcher or organization must commit (in writing and to the person in charge of the institution) to abstain from all subsequent disclosure of the information as long as its format seemingly allows for identification of the individual concerned. In addition, the first edition of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS) (1998, 2000 and 2005) and the CIHR Best Practices