Introduction
Beginning in spring 2007, Statistics Canada will conduct the Canadian Health Measures Survey (CHMS). This new survey will collect information through self-reported data on health and through direct physical measures. It is anticipated that approximately 5,000 respondents will complete the entire survey, with one or two persons between the ages of 6 and 79 selected per household.
Objectives
A privacy impact assessment for the CHMS was conducted to determine if there were any privacy, confidentiality and security issues associated with the survey, and if so, to make recommendations for their resolution or mitigation.
Description
The CHMS will collect information that will help evaluate the extent of health problems among Canadians in such areas as chronic diseases (e.g., diabetes and cardiovascular disease), infectious diseases, lifestyle characteristics (e.g., physical activity and nutritional status) and environmental exposures. The survey will also provide a means to explore emerging public health issues and new measurement technologies.
The CHMS will collect data both through a questionnaire administered in the household and physical measure tests administered in a mobile health clinic. As part of the data collection, respondents will undergo a series of physical tests and will be asked to provide tissue samples (blood and urine) that will be subsequently sent to various government laboratories under contract to Statistics Canada to perform tests.
Because of the highly personal nature of the information being collected, tested and processed, the privacy impact assessment identified a number of potential privacy issues and risks. They include:
- Transmission of information/samples between mobile clinics and Statistics Canada Headquarters and the laboratories
- Reporting back survey and laboratory results to respondents
- Storage of physical specimens (blood, urine and DNA)
- Retention of personal identifiers
- Permission of respondents for future tests
- Age of consent regarding children in the survey
Measures put in place to address these issues include providing comprehensive information in order to obtain written informed consent from respondents, anonymous ID numbers on stored samples and other security procedures to ensure the confidentiality and integrity of respondents’ information.
Consultations and Review Boards
Privacy issues were discussed with, and input obtained from, the Office of the Privacy Commissioner of Canada. Similarly meetings to discuss the survey have been held with the offices of provincial privacy commissioners in all provinces.
As well, numerous other committees were used to direct the development of the survey and to address privacy and research ethics questions related to the survey. These include the CHMS Expert Advisory Committee, the Physician Advisory Committee and the Laboratory Advisory Committee. The CHMS also engaged in detailed discussions with the Health Canada Research Ethics Board and received their approval to proceed.
Conclusion
The conclusion is that with the enhanced and existing Statistics Canada safeguards and procedures and those to be in place at the mobile clinics and the laboratories, any remaining risks will be either negligible or are such that Statistics Canada is prepared to accept and manage these risks.