Towards ethically sound participatory research with marginalised populations: experiences from India

Abstract

Participatory research is increasingly being used with poor and marginalised populations in developing countries. However, there has been relatively little attention paid to ethical considerations in participatory research. We argue that there is a need for additional strategies to promote ethically sound participatory research, especially when working with marginalised groups. We present our experiences from a participatory research initiative with an indigenous population in rural India, in which we developed and implemented a Code of Research Ethics and sought community consent as well as individual consent. The challenges that we faced and how we attempted to overcome them are also discussed.

Dans le sens de recherches participatives robustes sur le plan éthique avec des populations marginales : expériences d'Inde

Les recherches participatives sont de plus en plus utilisées avec des populations pauvres et marginalisées dans les pays en développement. Cependant, une attention relativement faible a été accordée aux considérations éthiques dans les recherches participatives. Nous soutenons qu'il est nécessaire d'adopter des stratégies supplémentaires pour promouvoir des recherches participatives robustes sur le plan éthique, en particulier au moment de travailler avec des groupes marginalisés. Nous présentons nos expériences d'une initiative de recherche participative avec une population autochtone dans une zone rurale de l'Inde, dans le cadre de laquelle nous avons élaboré et mis au point un Code d'éthique en matière de recherche et tenté d'obtenir le consentement de la communauté ainsi que celui des individus. Les défis auxquels nous nous sommes heurtés et la manière dont nous avons tenté de les relever font aussi l'objet d'une discussion.

Em direção a uma pesquisa participativa eticamente sœlida com populaçóes marginalizadas: experiéncias da Índia

A pesquisa participativa está cada vez mais sendo utilizada com populaçóes pobres e marginalizadas em países em desenvolvimento. Porém, tem havido relativamente pouca atenção a consideraçóes éticas na pesquisa participativa. Argumentamos que há uma necessidade de estratégias adicionais para promover pesquisa participativa eticamente sœlida, especialmente quando se está trabalhando com grupos marginalizados. Apresentamos nossas experiéncias a partir de uma iniciativa de pesquisa participativa com uma população nativa na zona rural da ëndia, na qual desenvolvemos e implementamos um Cœdigo de èica de Pesquisa e buscamos o consentimento da comunidade e também o consentimento individual. Os desafios que enfrentamos e o modo como tentamos superá-los também são discutidos.

Hacia una investigación participativa ética con poblaciones marginadas: experiencias de India

La investigación participativa se aplica cada vez más con poblaciones pobres y marginadas de los países en desarrollo. Sin embargo, se ha prestado poca atención a los aspectos éticos de este tipo de investigación. Los autores sostienen que sería conveniente contar con nuevas estrategias para promover la investigación participativa con sólidas bases éticas, en especial a la hora de trabajar con grupos marginados. Los autores presentan los resultados de una investigación participativa con una población indígena del sector rural de India, donde elaboraron e implementaron un Código de Ética para la Investigación que incluía el consentimiento tanto comunitario como individual. El ensayo también expone cómo los autores afrontaron los retos que surgieron.

Keywords:

• Methods
• Social sector
• South Asia

Acknowledgements

The authors are grateful to the Paniyas who participated in this study. We thank Planet Kerala for their help. Finally, we thank Beatrice Goddard and Matthew Hunt for their valuable comments on an earlier draft.

Additional information

Notes on contributors

K. S. Mohindra

K. S. Mohindra is Global Health Postdoctoral Fellow (Canadian Institutes of Health Research) at the Institute of Population Health, University of Ottawa. Her research focuses on how to break the cycle of poverty and ill health among women and marginalised populations. Her most recent book is Women's Health and Poverty Alleviation in India.

D. Narayana

D. Narayana is a Professor and Reserve Bank of India Development Studies Chair at the Centre for Development Studies, Thiruvananthapuram, Kerala, India. His current areas of interest are decentralised governance and health care services. He is also actively involved in capacity building at the level of the local government and women's self-help groups in Kerala. <[email protected]>

Slim Haddad

Slim Haddad is a Professor with the Department of Social and Preventive Medicine, Université de Montréal, and Senior Researcher with the Centre de Recherche du Centre Hospitalier de l'Université de Montréal. He has led numerous studies in low- and middle-income countries. His areas of expertise include intervention research and evaluation in global public health. <[email protected]>