Vulnerability and Leaving No One Behind in Research: The Recommendations

AbstractThis concluding chapter summarises how we challenged the protection-inclusion dilemma in order to avoid leaving people behind in research unnecessarily. The fact remains that individuals from highly impoverished, stigmatised groups in lower-income settings face a high likelihood of being harmed and exploited in research. However, excluding them from research is not the answer and can also be seen as a patronising interference in the lives of people who might benefit from research and might welcome long-term relationships of trust with researchers. Achieving long-term relationships of trust requires research methods that strive to be minimally burdensome and minimally risky. In the context of working with the South African San and the Nairobi sex workers, this means that we had to avoid all personal data collection. It also required community involvement at all stages of the research. A key consideration, often lacking from the wider literature, is how community researchers are identified, trained and supported. In our work, this involved trusted community members leading the training, and the use of storytelling, humour and Socratic methods to encourage reflexivity, compassion and sensitivity. Notable findings generated from our work include that ‘vulnerability’ is not lost in translation, even though the English term is not readily translatable into relevant other languages, or where the main stressors—such as the stigmatisation, discrimination, marginalisation and abuse besetting the sex worker community—cannot simply be subsumed under “vulnerability”, because they involve specific individual actors who bring about hardship. Our work identifies an approach for leaving no one behind in research that can stimulate a deeper understanding of how equitable research partnerships with highly marginalised groups can be achieved.