Hazel Partington

Leaving no one behind is the main transformative promise of the UN’s 2030 Agenda for Sustainable Development. It encapsulates the 21st-century mission of inclusion. This chapter introduces the main mission of this book: leaving no one behind in research. It provides the context for all the chapters that follow by explaining what it means to leave no one behind in research, how the protection-inclusion dilemma for vulnerable groups and individuals is generated, and how risks and mistrust in research might be reduced. The book was written in collaboration with two groups who are traditionally labelled as highly vulnerable and are therefore often excluded from research: the South African San community and an impoverished sex worker community in Nairobi. Working closely throughout all research stages with the two communities, including co-authorship of this book, we prioritised research-participant needs over researcher needs, aiming for minimally risky and minimally burdensome research, as well as increased trust in researchers. This involved foregoing the collection of personal data and obtaining all research input through community researchers. It led to a potential alternative to exclusion from research, namely research led by vulnerable groups for vulnerable groups.

Sex work is one of the most stigmatised professions in many parts of the world. In Kenya, where it is also illegal, sex workers can even face rape and abuse at the hands of law enforcement agents when it becomes known how they earn a living. As a result, sex workers rarely disclose their profession to family members, let alone outsiders. This means that the involvement of Kenyan sex workers in research over the years has been highly risky, as most research efforts collect personal data. This chapter describes a four-stage investigation into how sex workers define vulnerability for themselves. The approach was community-driven, community-led and, in the main, community-analysed. Importantly, no personal data was collected, and all engagement was undertaken by trusted facilitators and a sex worker community researcher. Findings showed that structural vulnerabilities are intersectional and stigma-aggravated. At the root may be poverty, but the stress created by being stigmatised can lead to mental health problems which, in turn, can aggravate poverty and stigma. The Kiswahili term mnyonge may capture the essence of vulnerability, expressing a sense of weakness without the ability to defend oneself.

This 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.

The Indigenous San peoples, often referred to as South Africa’s “First Peoples”, experienced a violent history of displacement and genocide. Modern-day San still suffer from the intergenerational trauma inflicted by colonists as well as discrimination, marginalisation and impoverishment. In addition, the South African San are collectively labelled as a vulnerable group, whose inclusion in research should be reduced to a minimum if one follows traditional protection mechanisms from research ethics. The purpose of this chapter is to let the San define “vulnerability” for themselves through workshops and community-administered surveys. It became clear that San representatives did not perceive the word “vulnerable” to be pejorative per se. On the contrary, it served as a useful umbrella term to cover a vast range of issues and problems. However, it also became clear that the term is perceived as negative when external actors block research—in a potentially patronising manner—that could be beneficial to the community. Equitable research partnerships between researchers and South African San community members, facilitated by the South African San Council and guided by the San Code of Research Ethics, can lead to rich data that have the potential to assist the community in finding ways out of vulnerability. Externally labelling them as “vulnerable” as a group and blocking access to research cannot be the solution.

What do ethics codes and guidelines tell us about who is vulnerable in research? To what are they vulnerable? And how might this vulnerability be addressed? These questions guided our analysis of 57 research ethics codes and guidelines that mention the involvement of vulnerable persons in research. The chapter draws upon the findings from this analysis to help explain how and why some people might be excluded from research unnecessarily. The investigation is also informed by the findings from an empirical study into the perspectives of 22 researchers who have extensive experience of undertaking research with vulnerable individuals. Their encounters with research governance measures, including research ethics approval and research ethics codes, expose challenges that can exacerbate unnecessary exclusion from research. We learn from the researchers and the research ethics codes that governance measures intended to protect the vulnerable from exploitation in research can lead to unfair exclusion when applied in a blanket fashion. Research governance guidelines and processes must encourage a more nuanced understanding of what it means to be vulnerable in research to ensure that people are not left behind unnecessarily.

Engaged research, which strengthens research teams through community researchers, offers many opportunities and challenges. From better access to community members who are hard to reach, to the collection of more meaningful and authentic data, and greater trustworthiness of research findings, the benefits for research are manifold. However, research has also shown that community researchers might be overtly biased, only collect superficial data or lack the confidence to probe deeply enough, among other challenges. Simultaneously, the literature on community researchers is heavily biased towards high-income countries, and there is very little to be found on experiences from low-and middle-income countries that goes beyond assistance in obtaining informed consent. This chapter starts to close that gap by presenting a case study involving 12 community researchers from the South African San community. Collecting no personal data and obtaining all research input through community researchers shows that research led by vulnerable groups for vulnerable groups is possible. It is one way of ensuring that the San, and wider research communities, have access to research they can trust.