Reimagining institutional ethics procedures in research partnerships with young people across Majority/Minority World contexts

ABSTRACT

While institutional ethics are crucial, their application on the ground often creates tensions with what is considered ‘ethical'. This paper reflects on the dissonances between formal institutional ethics and community-based research. The focus is on a project involving young people from India and Brazil, where they actively contributed as co-researchers and advisors. The project's international collaboration encompassed partners from Majority and Minority World contexts, including universities, community organizations, and government bodies. The project, initially planned before the Covid-19 pandemic but implemented during it, necessitated adjustments to its methodology. This paper examines the role of institutional ethic procedures in light of power imbalances and tensions within three areas: (1) research co-production with young people, (2) collaborative cross-country research with partners, and (3) the relevance of ethical guidelines in diverse research contexts. We raise concerns about the top-down nature of these procedures and emphasise the significance of reflexivity, conversations, and relationships in ethical considerations. With growing research in the Majority world (funded by the Minority world), there is an urgent need to recognise and build on the expertise of experienced local civic society organisations in ethical research and safeguarding, to work in genuine, respectful partnership with those we do research with.

KEYWORDS:

• Institutional ethics
• young people
• Majority/Minority World
• research co-production

Acknowledgements

We would like to thank the young people and adult professionals who participated in the research, particularly the members of the Youth Expert Groups in India and Brazil. The project was undertaken by scholars and practitioners from the University of Edinburgh, UK (Sukanya Krishnamurthy, Mary Ann Powell, Loritta Chan, E. Kay M. Tisdall), Youth for Unity and Voluntary Action, India (Roshni Kishore Nuggehalli, Alicia Tauro, Sachin Nachnekar), Fields of View, India (Bharath Palavalli, Vaibhav Dutt), National Institute of Urban Affairs, India (Mayura Gadkari, Ajay Suri), and The International Center for Research and Policy on Childhood at the Pontifical Catholic University of Rio de Janeiro (CIESPI/PUC-Rio) Brazil (Irene Rizzini, Renata Brasil).

Disclosure statement

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

Notes

1 Majority and Minority World is an alternative terminology for Global South/Third World/Developing world and Global North/First World/Developed world respectively (Punch 2016).

2 For example, the Nuremberg Code (1947), the Declaration of Helsinki (1964), Belmont Report (1979).

3 The National Health Council in Brazil adopted Guidelines and Norms Regulating Research involving Human Subjects (Conselho Nacional de Saude, 1996, Resolution, 196/96). Subsequent adoption of Resolution 466/12 (2012) and Resolution 510 (2016) are more accommodating of qualitative and social research, however the default position and universal ethical approach in Brazil privileges positivist and medical research as outlined in Resolution 196/96 (Israel 2015). The Indian Council of Medical Research (ICMR) published a policy statement on ethical considerations in 1980, followed by establishment of Ethical Guidelines for Biomedical Research on Human Subjects in 2000, subsequently revised in 2006, all focused largely on clinical trials. The most recent iteration includes the National Ethical Guidelines for Biomedical and Health Research Involving Human Participants (2017), however Nderitu and Kamaara (2018) note the seeming ignorance in the guidelines of what social and behavioural sciences constitute, and the lack of recognition of the breadth of social and psychological risks.

4 Articles 12.1 (freedom of opinion), 13.1 (freedom of expression), 36 (protection from harm and exploitation) and 3.3 (standards of care).

5 The Youth Expert Groups worked with adult researchers in each location, developing the project’s local scope and focus, guiding and advising local youth-led research projects, facilitating trainings, establishing/connecting with community networks, documentation and disseminating findings, and participating in knowledge exchange events.

6 While the project in Brazil was carried out as a group of young people, in India the young people wanted to work individually in their communities.

7 The grant supported training and capacity building activities in India and Brazil. The young people did not receive any cash remuneration for their participation but participated in training and various knowledge exchange activities (nationally and internationally).

8 ‘Tanisha’ is a pseudonym used for the young researcher to protect their identity.

Additional information

Funding

The support of the British Academy (BA, grant no: YF\190041) is gratefully acknowledged.