Research ethics considerations in RDM
Part of creating and implementing research data management, especially when considering data deposits of clinical biomedical research, involves patient consent. Canada’s clinical community has yet to harmonize consent language considering shifting data management and deposit mandates.
Below we present an infographic developed for use as a training tool. The collaboration between Research Ethics Boards and researchers will help better equip research communities in effectively and efficiently complying with new and incoming research data management requirements, including that of the Tri-Agency Research Data Management policy.
Harmonized consent language for data sharing
The template provides guidance that can be adapted to the research team's study and goals. This document is a working draft and will continue to be reviewed and refined. This is a pan-Canadian effort. In our next steps, the templates will be reviewed from a legal and bioethical perspective, then reviewed from a patient perspective.
Last updated: 2024-03-28
- This is version 1 of the templates, still awaiting legal review.
Consent is critical to clarify factors of what a participant may expect for how their data will be collected, handled, stored, and/or shared to be used in the future.
Here, we present templates for consent for REBs for data sharing, illustrating the continuum of consent language for restricted access to open data sharing, as well as obtaining consent retrospectively.
Templates for sharing genomics data and samples in biobanks will be coming soon.