Canadian Health Measures Survey: ethical, legal and social issues

This article describes how the Canadian Health Measures Survey (CHMS) of Statistics Canada has addressed the ethical, legal and social issues (ELSI) arising from the survey. The development of appropriate procedures and the rationale behind them are discussed in detail for some specific ELSI. Health Canada's Research Ethics Board, the Office of the Privacy Commissioner of Canada, and the Data Access and Control Services Division at Statistics Canada, provided advice to the CHMS on ELSI. Statistics Canada's legal obligation to protect confidentiality, the oath of office, and security measures at Statistics Canada are explained. Additional information on safeguards specific to the CHMS is presented. The ELSI discussed include communication and consent, privacy and confidentiality, reporting results to survey respondents, inclusiveness, and storage of biospecimens. Common to all ELSI is the need for respondents' awareness and acceptance of their role in the survey process, and the obligation of the CHMS to respect respondents and the data they provide.