Ethical Issues in Participatory Action Research on Covid-appropriate Behaviour and Vaccine Hesitancy in India: A Case with Commentaries

ABSTRACT

This article starts with a case outlining ethical challenges encountered in participatory action research (PAR) on vaccine hesitancy in rural India during Covid-19. Community researchers were recruited by a not-for-profit organisation, with the aim of both discovering the reasons for vaccine hesitancy and encouraging take-up. This raised issues about the roles and responsibilities of local researchers in their own communities, where they might be blamed for adverse reactions to vaccination. They and their mentor struggled with balancing societal protection against individual rights to make choices. These themes are explored in two commentaries discussing the difficulties in balancing ethics in public health (prioritising societal benefits), social research (protecting participants from harm and respecting their rights not to be involved) and participatory research practices (maximising democratic participation and decision-making). As discussed in the first commentary, often these cohere, but tensions can arise. The second commentary also raises the issue of epistemic justice, questioning the extent to which the villagers could have a say in the design, implementation and interpretation of the research, and the dangers of not hearing the voices and arguments of people who reject vaccination. The case and commentaries highlight the complexities of PAR and additional challenges in a public health context.

KEYWORDS:

• Vaccine hesitancy
• India
• participatory health research
• ethics
• Covid-19

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Notes on contributors

Pradeep Narayanan

Pradeep Narayanan is a Director, Research, Praxis Institute for Participatory Practices, New Delhi, India. He is a practitioner of participatory methods and approaches. He works on participatory monitoring and evaluation with community mobilisation, ethics, child rights and bonded labour as themes.

Michelle Brear

Michelle Brear is a postdoctoral research fellow at the University of Witwatersrand in South Africa. Her research focuses on community-participatory health research and interventions in rural southern Africa contexts. She is currently conducting an anthropology of participation in informal caregiving for people with dementia.

Pinky Shabangu

Pinky Shabangu is a community-based researcher and activist in a participatory health research project in Eswatini. She is currently working as a research assistant, a role that has enabled her to reflect on her experiences of being a community researcher. She has an interest in social research, particularly about gender issues, women and children’s health and development in the Global South.

Barbara Groot

Barbara Groot is a senior researcher at the Leids Medical University Centre (LUMC) in the Netherlands. Her research focusses on the ethical reflection of co-researchers in participatory health research and extreme citizen science. She teaches qualitative and participatory research.

Charlotte van den Eijnde

Charlotte van den Eijnde is a PhD candidate at Leids Medical University Centre (LUMC), Netherlands. She conducts participatory research into the moral relational learning of healthcare professionals, together with stakeholders from education and healthcare practice.

Sarah Banks

Sarah Banks is a Professor in the Department of Sociology and co-founder of the Centre for Social Justice and Community Action, Durham University, UK. She coordinates the Ethics Working Group of the International Collaboration for Participatory Health Research and has a particular interest in ethics in participatory research.