Abstract
Objectives
The second edition (2010) of the Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans (TCPS2) prescribes a set of principles and provisions for engagement with Aboriginal communities. The objective of this study was to explore research ethics board (REB) stakeholder perspectives on the principles and processes of reviewing and conducting public health research with Aboriginal populations and communities.
Method
Twenty-four semi-structured qualitative interviews were conducted with REB staff, chairs, members (academic, community and student), and ethics policy key informants with knowledge of the ethics review process, including four Aboriginal participants. Interviews were professionally transcribed verbatim and thematically analyzed using NVivo 8 qualitative data management software.
Results
Three dominant themes emerged specific to ethical research practices with Aboriginal communities: 1) the importance of understanding Aboriginal research as a distinct form of research; 2) the unique nature and complexity of negotiating community consent; and 3) the importance of trust and relationship-building in the research process.
Conclusion
Thematic results highlight the most prominent issues that REB participants encountered in reviewing research involving Aboriginal peoples. Continued attention needs to be paid to acknowledging and respecting issues of diversity in research involving diverse First Nations, Inuit and Métis peoples. While specific to Aboriginal peoples, the TCPS2 guidelines also illustrate processes and practices that may assist in the development of respectful, collaborative public health research relationships with other historically marginalized populations.
Keywords: Ethics, research; ethical review; community-based participatory research; Aboriginal research
Résumé
Objectifs
Dans la deuxième édition (2010) de l’Énoncé de politique des trois Conseils: Éthique de la recherche avec des êtres humains (EPTC 2), on prescrit un ensemble de principes et de dispositions pour traiter avec les communautés autochtones. Nous avons voulu étudier les perspectives des membres des comités d’éthique de la recherche (CÉR) sur les principes et les processus d’examen et de conduite de la recherche en santé publique auprès des populations et des communautés autochtones.
Méthode
Vingt-quatre entretiens qualitatifs semi-directifs ont été menés avec le personnel, les présidents et les membres (universitaires, grand public et étudiants) de CÉR et avec des spécialistes des politiques en matière d’éthique pouvant nous informer sur le processus d’examen de l’éthique, dont quatre participants autochtones. Les entretiens ont été professionnellement transcrits, mot à mot, et analysés par thème à l’aide du logiciel de gestion de données qualitatives NVivo 8.
Résultats
Trois grands thèmes se sont dégagés en ce qui a trait aux pratiques éthiques dans la recherche avec les communautés autochtones: 1) l’importance de considérer la recherche autochtone comme une forme de recherche distincte; 2) la singularité et la complexité de la tâche de négocier le consentement communautaire; et 3) l’importance d’établir la confiance et de tisser des relations au cours du processus de recherche.
Conclusion
Les résultats par thème font ressortir les principales difficultés rencontrées par les participants des CÉR lors des examens d’études de recherche auprès des Autochtones. Il faut poursuivre nos efforts pour reconnaître et respecter l’enjeu de la diversité dans la recherche impliquant diverses populations inuites, métisses et des Premières Nations. Bien qu’elles soient axées sur les Autochtones, les lignes directrices de l’EPTC 2 illustrent un processus et des pratiques qui peuvent aider à tisser des relations respectueuses et collaboratives lorsqu’on fait de la recherche en santé publique avec d’autres populations longtemps marginalisées.
Mots clés: éthique de la recherche, évaluation en éthique, recherche participative communautaire, recherche autochtone
Footnotes
Acknowledgements: Research funding was provided by the Canadian Institutes of Health Research (CIHR) [grant FRN 87363]. We thank: members of the Improving the Accessibility of Research Ethics Boards for Community-Based Research in Canada research team, including Robb Travers, Jacqueline Gahagan, Patricia O’Campo, Stephanie Nixon, Claudia Mitchell, Louise Binder, Mike Wilson, Sarah Fielden and Adrian Guta; the talented team of research assistants who contributed to this phase of the study, including Lauren Munro and Gillian Kolla; and our community partner, the Ontario HIV Treatment Network, for in-kind contributions. We are especially grateful to the participants who made this work possible by sharing their time and rich insights with us, and to an Aboriginal scholar who reviewed the manuscript, but who wishes to remain anonymous.
Conflict of interest: None to declare.
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