Tri-Council Policy Statement
Ethical Conduct of Research
All research conducted in preparation for, or as part of, the Canadian Longitudinal Study on Aging (CLSA) abides by the requirements of the Canadian Institutes of Health Research (CIHR) and relevant institutions for ethical conduct and privacy protection in health research.
CIHR requirements for the ethical conduct of research can be found in the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS)
CIHR best practices for protecting privacy can be found in Best Practices for Protecting Privacy in Health Research
Ethical, Legal and Social Issues (ELSI) Advisory Committee
CIHR has established an advisory committee to address the ethical, legal and social issues related to the CLSA. The Ethical, Legal and Social Issues (ELSI) Advisory Committee is composed of lawyers, ethicists, geneticists, biologists, epidemiologists, philosophers, sociologists, and a privacy commissioner. A full time legal scholar coordinates the ELSI agenda for this project. Challenges arising from ethical, legal and social issues associated with the CLSA will be evaluated on a continuing basis by the CLSA researchers together with the ELSI Advisory Committee. The conduct of the CLSA will conform to the ethical and legal guidelines that will be developed by this committee. Ethical aspects of the CLSA will be a subject of ongoing collaboration and consultation with ELSI.
Privacy and Data Security
The CLSA scientific team, in collaboration with the ELSI Advisory Committee, is in the process of establishing appropriate policies to protect the privacy, confidentiality and integrity of data collected as part of the CLSA. Comprehensive organizational, technological, and physical procedures and policies will be developed to ensure that the data collected and held by the CLSA will be protected against loss, corruption, destruction, theft or unauthorized disclosure.
Data collected from CLSA participants will only be used for research that meets criteria relating to scientific merit, ethical acceptability, and public interest. All personally identifiable information will be stripped from data. Requests for data from CLSA researchers will be reviewed by a CLSA Data Access Committee and submitted for approval to an independent ethics review panel composed of scientists, ethicists, and lay persons.
All CLSA staff will sign an oath of confidentiality agreeing to adhere to strict privacy policies and procedures for ensuring the confidentiality and security of data held by the CLSA.
Questions?
If you have questions about CLSA’s research ethics or privacy and security policies and procedures, please contact:
Name: Dr. Parminder Raina
Telephone: (905) 525-9140 Ext. 22197
Email: