Protecting your privacy

The Canadian Longitudinal Study on Aging (CLSA) is committed to protecting the privacy of participants, safeguarding the confidentiality of personal information, and ensuring a secure environment for all information collected as part of the CLSA research platform.

All personal information collected for the CLSA is managed in compliance with McMaster University’s privacy policies, the province of Ontario’s Freedom of Information and Protection of Privacy Act (FIPPA) and Personal Health Information Protection Act (PHIPA), as well as the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans – TCPS 2 (2022).

The CLSA also recognizes the compliance requirements under Law 25, as it pertains to participants and users who reside in the Province of Quebec.

How is my privacy protected?

The CLSA is committed to ensuring that privacy and confidentiality are always respected. The CLSA meets this commitment to privacy by:

  • Establishing clear principles and strict policies for the protection of personal information, emphasizing high standards of organizational, technical and physical security procedures;
  • Ensuring that CLSA staff members are trained in the principles and procedures of personal information protection;
  • Restricting access to personal information to a limited number of CLSA personnel who have authorized access for research, administrative, or communications purposes;
  • Ensuring updates to the CLSA research protocol is reviewed regularly by the research ethics boards of the institutions involved;
  • Designating a member of the CLSA Executive Committee to oversee the study’s privacy protection policies and procedures and work in collaboration with the Advisory Committee on Ethical, Legal and Social Issues (ELSI) to review these policies and procedures and develop new ones as needed; and
  • Ensuring the CLSA’s policies and procedures are consistent with legislative requirements and the best provincial, national and international standards of privacy and confidentiality protection in health research.

CLSA Privacy Policy

The CLSA Privacy Policy has been developed to:  

  • Provide transparency and accountability regarding the practices for how the study manages and protects personal information; and 
  • Provide CLSA participants, researchers and users of the CLSA website and other CLSA online platforms with information on their privacy and access rights. 

PARTICIPANT PRIVACY POLICY WEB USER PRIVACY POLICY

Quebec Law 25 Compliance

As an entity operating within the Province of Quebec, the Canadian Longitudinal Study on Aging (CLSA) is subject to the Act respecting Access to documents held by public bodies and the Protection of personal information, chapter A-2.1 (the “Act”). The Act, also known as Law 25, defines Personal Information as any information that allows an individual to be identified, either directly or indirectly.

The CLSA recognizes the compliance requirements under Law 25, as it pertains to participants and users who reside in the Province of Quebec. These requirements include:

  • Privacy incident reporting: The CLSA is compliant with McMaster University’s Privacy Breach Protocol which includes a requirement to notify affected individuals whose information has been exposed as a result of a privacy incident.
  • Privacy impact assessment: McMaster University has a robust privacy impact assessment process, with an integrated algorithmic impact assessment, to identify risks to the protection of personal privacy.
  • Privacy Notice: The CLSA website provides information regarding how personal information is collected, how consent is obtained and with whom information is shared. The full version of the privacy notice related to participants is included in the CLSA Participant Privacy Policy.
  • Personal Information Clause: The CLSA ensures that any contract, partnership, agreement of purchase of goods or services – all third-party partners or service providers – that it engages with are held to specific privacy obligations contained in the law. All units, departments and individuals must now add a Personal Information Clause along with a linked addendum to these types of contracts to be compliant.
  • Data Subject Rights: Law 25 empowers individuals with rights granting them control over their personal information, including a right to access, right to correction, right to portability, right to erasure, right to information regarding how their information is used and secured, and a right to object to automated decision-making.

For more information on how the CLSA protects personal information , please contact us toll-free: 1-866-999-8303, or via e-mail: info@clsa-elcv.ca.

Who ensures high ethical standards?

All research conducted in preparation for, or as part of, the Canadian Longitudinal Study on Aging abides by the requirements of the Canadian Institutes of Health Research (CIHR) and relevant institutions for ethical conduct and privacy protection in health research.

The CLSA participates in an ethical review process at universities and research institutions involved in the study. This process involves local research ethics boards reviewing all changes to the CLSA research protocol. Research ethics boards are responsible for ensuring compliance with national, provincial and institutional standards and policies on research involving human subjects.

The CLSA Advisory Committee on Ethical, Legal and Social Issues (ELSI) meets regularly, as part of a broader CLSA governance structure, to uphold the accountability, transparency and integrity of the CLSA.

Research Ethics Boards

The CLSA research protocol has been reviewed by the following Research Ethics Boards. If you have questions regarding your rights as a research participant, you may contact the Research Ethics Board in your province.

Simon Fraser University

8900 Nelson Way 
Burnaby BC V5A 4W9

University of British Columbia

Office of Research Services 
6190 Agronomy Road 
Vancouver BC V6T 1Z3 

University of Victoria

Administrative Services Building (ASB), Room B202 
PO Box 1700 Stn CSC 
3800 Finnerty Road 
Victoria BC V8W 2Y2

Island Health

Queen Alexandra Centre
Main Building Room 205
2400 Arbutus Road
Victoria BC V8N 1V7

University of Calgary

MacKimmie Tower (MT), 6th Floor 
University of Calgary 
420 Campus Lane NW 
Calgary, AB T2N 1N4 

University of Manitoba

Bannatyne Campus 
University of Manitoba 
P126 Pathology Building 
770 Bannatyne Avenue 
Winnipeg MB R3E 0W3 

Bruyère Continuing Care

43 Bruyère Street 
Ottawa ON K1N 5C8

McMaster University

237 Barton Street 
Suite C1-205 
Hamilton ON L8L 2X2

McGill University Health Centre (MUHC)

5100, boul. de Maisonneuve Ouest, 5th floor, Office 576
Montréal, Québec, H4A 3T2

University of Sherbrooke

CIUSS de l’Estrie-CHUS 3001,  
12e Avenue Nord, bureau 2929 
Sherbrooke QC J1H 5N4

Memorial University

2nd Floor, Bonaventure Place
95 Bonaventure Avenue
St. John’s NL A1B 2X5 

Dalhousie University

6299 South Street 
2nd Floor, Suite 231 
Halifax NS B3H 4H6