Research Data Management

Data Ethics and Research Ethics

Ethical Data Management

The principles of data ethics are rooted in the principles of research ethics, particularly the ethical considerations of data collection, analysis and use. Ensuring fair, non-discriminatory, and transparent data practices from the outset of research is crucial for ethical data-driven research.

UWinnipeg's Research Ethics
Apply for human ethics, resources & FAQs.
Resources for Researchers Sharepoint (Human Ethics) (UWinnipeg Only)
Additional resources only available to UWinnipeg faculty and staff.

Sensitive Data & Informed Consent

The Sensitive Data Expert Group of the Alliance has created a suite of tools for Canadian researchers. These tools have been created to help researchers understand how research data is involved in the research ethics process, and to address the evolution of research data management (RDM) practices such as data sharing and deposit in the context of existing research ethics frameworks.

Senstive Data Toolkit for Researchers Part 1: a Glossary of Terms for Sensitive Data used for Research Purposes
This tool is intended to provide definitions for a number of common terms used in the discussion of the management of sensitive data in the Canadian context.
Senstive Data Toolkit for Researchers Part 2: Human Participant Research Data Risk Matrix
This tool is intended to help researchers determine risk level for human participant research data, and make decisions with respect to its management, deposit, and appropriate access/future use.
Senstive Data Toolkit for Researchers Part 3: Research Data Management Language for Informed Consent
This tool is intended to assist researchers working with sensitive data in the development of tailored, deposit- friendly language for ethics approval and informed consent.
Can I Share My Data?
This decision tree is designed to help alert researchers to situations where human participant data would need to be anonymized or de-identified before being deposited into a repository. It relies heavily on the Canadian Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans – TCPS 2 (2018) which addresses consent and secondary use of information for research purposes.
Recommended Informed Consent Language for Data Sharing (ICPSR)
Language to avoid, model language, known concerns and recommended alternatives for informed consent language for data sharing.

Participatory Research

Participatory Research & Data Management

Participatory research is a collaborative approach to research where community stakeholders, including those directly affected by a problem, actively participate in all stages of the research process, from identifying the problem to disseminating the findings. Participatory research can and should extend to the research data management practices of the project, to truly achieve community involvement in all decision making.

Resources

Autistic Self Advocacy Network - Research Resources
"We need more research that helps autistic people live our lives. But most autism research focuses on trying to find out what causes autism, in order to prevent or “cure” it. This is not research that autistic people want. It doesn’t help autistic people that are here now. More money needs to be given to research that helps us, like research on communication, community living, education, and health care for autistic people."
UWinnipeg's Community Based Research Training Centre
The Community-Based Research Training Centre (CBRTC) provides accessible resources, training, and supports for getting involved in community-based research. The CBRTC expands local capacity for community-based research (CBR) by offering a range of free events and workshops. These are open to post-secondary student, faculty, or community members interested in learning more about CBR.
A Guide to Selecting Participatory Research Methods Based on Project and Partnership Goals
Duea, S. R., Zimmerman, E. B., Vaughn, L. M., Dias, S., & Harris, J. (2022). A Guide to Selecting Participatory Research Methods Based on Project and Partnership Goals. Journal of Participatory Research Methods, 3(1). https://doi.org/10.35844/001c.32605