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About this document

Table of contents Disclaimer Acknowledgements Foreword Preface Acronyms used in this document About this document 1. Introduction 2. Guiding principles for participatory health research 3. Communicating about research 4. Roles and responsibilities 5. Preparing a health research agreement References Selected further reading Annex A: Key elements of research ethics procedures and guidelines Annex B: Example of a research agreement concluded between CINE and an indigenous community in Canada Annex C: Example of a form for obtaining individual informed consent Annex D: Example of collective consent obtained from an indigenous organization

This document provides information on how research projects can be set up between Indigenous Peoples and research institutions, in a collaborative and ethically appropriate manner, on the basis of good management practices. It outlines key principles for participatory research management, and steps in the communications process between Indigenous Peoples and research institutions from the development of a research idea to negotiation of a mutually acceptable research agreement. Beyond the basic principles outlined in this document, all culture-specific local rules, requirements, and ethics should be taken into account.

This information is likely to prove most useful in the context of community-based research carried out with the active involvement of participants identifying themselves as indigenous, for the purpose of addressing and improving health problems and outcomes through mutually identified and agreed approaches and interventions.

All health research involving humans requires ethics clearance in accordance with established national mechanisms. This involves peer-review of research proposals and clearance through an ethics review board or committee. This document is not intended as a substitute or replacement for national and international medical research ethics procedures.

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