How do confidentiality and privacy play out in practice for TCPS 2 research?

• A. Privacy equates to data publishing; confidentiality means data is freely shared.
• B. Privacy only matters for genetic data; confidentiality is universal.
• C. Privacy governs information collection and use; confidentiality concerns protecting data from unauthorized access.
• D. They are separate and unrelated concepts.

Answer: (C)

In TCPS 2 practice, privacy and confidentiality address different parts of how information about participants is handled from the start to the end of a study. Privacy governs information collection and use: what data are asked for, why they’re collected, how they’ll be used, and who may access or learn about them, including what is disclosed in consent. This shapes decisions about consent, data collection limits, and whether data can be linked or shared beyond the study.

Confidentiality focuses on protecting the data once it exists: preventing unauthorized access, disclosure, loss, or misuse through safeguards like secure storage, access controls, de-identification or coding of data, encrypted transfers, and clear data-sharing agreements. It also involves governance practices about who can see the data and under what conditions.

Choosing the option that privacy governs information collection and use while confidentiality concerns protecting data from unauthorized access accurately reflects how these concepts operate in practice under TCPS 2. It captures the flow from gathering information to keeping it secure, which is central to respecting participants’ privacy and ensuring data security. The other descriptions misstate the roles of privacy or confidentiality and don’t align with how researchers plan and report protections in TCPS 2.