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Acknowledgements

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 is based on an initial draft prepared for the World Health Organization (WHO) by Karen Fediuk, MSc, and Harriet V. Kuhnlein, PhD, RD, Centre for Indigenous Peoples’ Nutrition and Environment (CINE), McGill University, Quebec, Canada. CINE has continued to work closely with WHO on successive revisions of the document. A statement outlining CINE’s approach and response strategy can be found on the back cover of this document.

A large number of institutions and individuals, both indigenous and non-indigenous, have provided comments and feedback on this document. While these are too numerous to name individually, we sincerely thank all who contributed their time and effort in this way.

Special thanks are due to Bill Erasmus, National Chief of the Dene Nation, Canada, and Chair of the CINE Governing Board, for helpful considerations and comments.

A Spanish version of the document is being prepared for circulation and comments.

Further comments and suggestions on this document and its use in the field are welcome, and should be addressed to:

Jacqueline Sims
Technical Officer
Sustainable Development and Healthy Environments (SDE)
World Health Organization
Avenue Appia 20
1211 Geneva 27
Switzerland
Tel: +41 22 791 3755
Email: simsj@who.int

Professor Harriet Kuhnlein
Founding Director
Centre for Indigenous Peoples’ Nutrition and Environment
Macdonald Campus of McGill University
21,111 Lakeshore Rd
Ste. Anne de Bellevue
Quebec, Canada H9X 3V9
Tel: +1 514 398 7671
Email: harriet.kuhnlein@mcgill.ca
CINE Website: http://www.cine.mcgill.ca/

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