Scope
Note: This Procedure is consistent with the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (“TCPS 2 (2022)”), Chapter 5 – Privacy and Confidentiality.
This procedure forms part of JIBC’s Research Involving Human Participants Ethics Policy (the “Policy”) and should be followed and applied in relation to the free and informed consent of participants in research at JIBC under the Policy. Terms not otherwise defined in this procedure are as defined in the Policy.
Purpose
JIBC acknowledges the interests of participants in protection of privacy, and the corresponding duties of researchers to treat personal information in a confidential manner.
Procedural Guiding Principles
All persons engaged in research at JIBC are responsible for compliance with all applicable legal and regulatory requirements with respect to protection of privacy, and consent for the collection, use or disclosure of information about participants. These requirements may vary by jurisdiction and, depending on who is funding or conducting the research, may include obligations under the Constitution (including the Canadian Charter of Rights and Freedoms), and federal or provincial privacy legislation, among other legal and regulatory requirements.
Ethical Duty of Confidentiality (TCPS 2 (2022), Chapter 5, Articles 5.1 and 5.2)
Researchers shall safeguard information entrusted to them and not misuse or wrongfully disclose it. Institutions shall support their researchers in maintaining promises of confidentiality.
Researchers shall describe measures for meeting confidentiality obligations and explain any reasonably foreseeable disclosure requirements:
- in application materials they submit to the Research Ethics Board (“REB”); and
- during the consent process with prospective participants.
Safeguarding Information (TCPS 2 (2022), Chapter 5, Articles 5.3 and 5.4)
Researchers shall provide details to the REB regarding their proposed measures for safeguarding information, for the full life cycle of information: its collection, use, dissemination, retention and/or disposal.
Institutions or organizations where research data are held have a responsibility to establish appropriate institutional security safeguards.
Consent and Secondary Use of Information for Research Purposes (TCPS 2 (2022), Chapter 5, Articles 5.5A and 5.5B)
Researchers who have not obtained consent from participants for secondary use of identifiable information shall only use such information for these purposes if they have satisfied the REB that:
- identifiable information is essential to the research;
- the use of identifiable information without the participants’ consent is unlikely to adversely affect the welfare of individuals to whom the information relates;
- the researchers will take appropriate measures to protect the privacy of individuals and to safeguard the identifiable information;
- the researchers will comply with any known preferences previously expressed by individuals about any use of their information;
- it is impossible or impracticable (defined as incapable of being put into practice due to a degree of hardship or onerousness that jeopardizes the conduct of the research, it does not mean mere inconvenience) to seek consent from individuals to whom the information relates; and
- the researchers have obtained any other necessary permission for secondary use of information for research purposes.
If a researcher satisfies all the conditions in Article 5.5A(a) to (f), the REB may approve the research without requiring consent from the individuals to whom the information relates.
Researchers shall seek REB review, but are not required to seek participant consent, for research that relies exclusively on the secondary use of nonidentifiable information.
When secondary use of identifiable information without the requirement to seek consent has been approved, researchers who propose to contact individuals for additional information or for reasons related to the welfare of the participant shall, prior to contact, seek REB approval of the plan for making contact.
Data Linkage (TCPS 2 (2022), Chapter 5, Article 5.7)
Researchers who propose to engage in data linkage shall obtain REB approval prior to carrying out the data linkage. The application for approval shall describe the data that will be linked and the likelihood that identifiable information will be created through the data linkage.
Where data linkage involves or is likely to produce identifiable information, researchers shall satisfy the REB that:
- the data linkage is essential to the research; and
- appropriate security measures will be implemented to safeguard information.