Keywords

6.1 Introduction

This book has aimed to tackle the protection-inclusion dilemma for vulnerable groups in research, with a particular focus on the South African San community and Nairobi sex workers. Both groups live in situations characterised by severe poverty, and both struggle with extreme stigma. Having secured a minimal livelihood in desperate circumstances, the Nairobi sex workers face stigmatisation, discrimination, marginalisation and abuse, as their occupation is illegal and taboo in Kenya. The South African San face unfairness and exclusion as a highly marginalised group in South Africa, stigmatised because of their languages and poverty-related social challenges.

6.2 Protection Through Exclusion Leaves Vulnerable Groups Behind in Research

For several decades, vulnerable groups have been largely excluded from research to protect them from harm and exploitation. This exclusion approach originated in medical research, which often carries risks and burdens. Imposing such risks and burdens on those already disadvantaged seemed inappropriate. Hence, the Declaration of Helsinki stipulates:

Medical research with a vulnerable group is only justified if the research is responsive to the health needs or priorities of this group and the research cannot be carried out in a non-vulnerable group. In addition, this group should stand to benefit from the knowledge, practices or interventions that result from the research. (WMA 2013: Art. 20)

In research ethics, Indigenous peoples and sex workers are often automatically labelled as vulnerable groups, and are therefore at high risk of being excluded from research. This can mean that the groups most in need of research are excluded from it. For instance, the 2012 UNAIDS Ethical Considerations in Biomedical HIV Prevention Trials notes that “men who have sex with men, injecting drug users, sex workers, transgender persons, indigenous populations, the poor, the homeless” are populations with an increased vulnerability (UNAIDS and WHO 2012: 31).

This approach of labelling entire groups as “vulnerable” is, however, slowly being abandoned. The updated 2021 UNAIDS Ethical Considerations in HIV Prevention Trials no longer singles out Indigenous populations and sex workers as vulnerable groups, but instead points to the social and political contexts of vulnerability (UNAIDS and WHO 2021: 37).

This growing movement recognises that protection through labelling as “vulnerable” is a potentially patronising (Rogers et al. 2012) approach, which can lead to additional victimisation (Wrigley and Dawson 2016). For instance, in 2016, the International Ethical Guidelines for Health-Related Research Involving Humans by the Council for International Organizations of Medical Sciences (CIOMS) noted that the council did not want to label entire classes of individuals as vulnerable. Instead, they wanted to look at specific characteristics that may render individuals prone to harm or exploitation and then identify mechanisms for better protection (CIOMS 2016: 57). However, this still leaves three problems: remaining possibilities for harm and exploitation; continuing reluctance to include vulnerable groups in research; and mistrust in researchers, a bottom-up version of exclusion from research, where individuals from vulnerable groups decide not to engage with researchers.

  • The potential remains that individuals from highly impoverished, stigmatised groups in lower-income settings face a higher likelihood of being harmed and exploited in research than privileged individuals in high-income settings.

The debate around “ethics dumping”—that is, the export of unethical research practices from higher to lower income settings—is intensifying rather than diminishing (Schroeder et al. 2019). The term was only coined in 2014, and now generates more than 700 entries on Google Scholar, the academic search engine. The extent of extreme poverty faced by the San and the sex workers might offer researchers “opportunities” to recruit them into studies against their better judgement. As noted in Chap. 3, San parents who cannot feed their children will be open to almost any kind of “incentives” to procure food. Giving researchers information (data), for instance on traditional knowledge, in return for a cash payment (that is unlikely to have been declared to a research ethics committee) seems an obvious way to obtain money for food. San community elder Petrus Vaalbooi referred to researchers “who come and tempt us with ten rand or five rand” (five rand being equivalent to €0.24 or £0.20) (Andries Steenkamp and Petrus Vaalbooi interviews 2018: 00:57).

  • Changes in supranational (as opposed to institutional) ethics guidance are not necessarily taken up by researchers or research ethics committees.

Laudable efforts like the CIOMS stipulation cited above—that the labelling of entire classes of individuals as vulnerable should be avoided—still face significant operationalisation challenges. As shown in Chap. 2, de facto group exclusion from research still happens. This can involve acts of “remote paternalism”, when research ethics committees in high-income countries exclude vulnerable populations in lower-income countries from international, collaborative research. Or it can occur when researchers decide, at the planning stage of their research, that the perceived or expected barriers to the involvement of vulnerable groups at the ethics approval stage will be so considerable that they would rather choose to work with non-vulnerable groups (De Poli and Oyebode 2023). The latter case can arise especially in the context of overly risk-averse, protectionist RECs, whose overprotection can take the form of exclusion from research (Friesen et al. 2023).

However, it is not only top-down exclusion by RECs that blocks access to research participation.

  • Individuals from vulnerable groups, potentially entire communities, can be reluctant to engage with researchers based on past experiences of exploitation and harm, whether colonial-type exploitation (Smith 1999), ethics dumping (Schroeder et al. 2018), or patronising or culturally inappropriate practices (Schroeder et al. 2021).

The result of all three problems (potential for exploitation, reluctance of researchers to work with vulnerable groups and vice versa) is the protection-inclusion dilemma (Friesen et al. 2023), which leads to vulnerable groups being left behind in research.

In tackling the protection-inclusion dilemma for the South African San and the Nairobi sex workers, we aimed to achieve our overall mission: to ensure that no one is left behind in research unnecessarily. To achieve this mission, we pursued both content and methodological innovations. We wanted:

  • to find out how two vulnerable populations define vulnerability for themselves

  • to do so with minimal risk and minimal burden to those who agreed to pursue this goal with us

  • to explore how we could reduce mistrust in researchers.

6.3 Vulnerability Lost in Translation?

Trying to establish how the South African San and Nairobi sex workers defined vulnerability for themselves hit early obstacles. All three San groups (!Khomani, !Xun and Khwe) struggled with the term, because they could find no satisfactory equivalent in the relevant San languages, or in Afrikaans, the main language spoken by the !Khomani San. Likewise, there seemed to be no immediately obvious equivalent in Kiswahili, the main language spoken by the Nairobi sex workers. This experience aligned with the PI’s, as “vulnerability” cannot be translated easily into her mother tongue, German, either.

6.3.1 Vulnerability Does Not Require an Agent Who Brings About Hardship

Explaining this conundrum in English is somewhat paradoxical, but possible through back-translations. As Tuhiwai Smith (1999: 36) has explained: “This is one of the ironies of many indigenous peoples’ conferences where issues of indigenous language have to be debated in the language of the colonizers.” In German (and then back-translated into English), the nearest equivalent term for vulnerability is “woundability”, which is a less than ideal match for communication in research ethics. The lack of good equivalents in some of the languages of this author team becomes even more obvious when one translates the Afrikaans term for vulnerability, “kwesbaarheid”, into German rather than English. The translation (back-translated into English) is then “sensitivity”, which is wholly unusable in discussions about vulnerable populations in research.

As most co-authors involved in this book speak several languages, including English, we tried to take great care not to impose the English connotations of the word “vulnerability” onto the San and sex worker representatives who took part in our research. It was crucial to see whether there was a broader concept that could be explained and recognised across language barriers.

Sometimes a new word from a foreign language can be a gift that expresses something one understands without having previously had a word for it. This seemed to be the case, at least for the San representatives. They defined “vulnerability” as weakness, the feeling of being in danger of attack or injury, the feeling of heartache or heartsore (see Chap. 3). In workshop discussions, they discovered that the word “vulnerability” could serve as a useful umbrella term to cover the vast range of issues and problems they experienced, from severe poverty to unemployment, health problems, and family and relationship problems, as well as drug and alcohol abuse.

The Nairobi sex workers who were involved in our research had similar answers for what “vulnerability” meant, once they had overcome the hurdle that there was no obvious translation into Kiswahili. For them, it also signified being in danger, suffering, being weak and poor, but it also meant having been stigmatised. They even found a word that might be a suitable translation for “vulnerability” after all: mnyonge, variously translated as being poor, wretched, frail or weak. What was most striking in the Nairobi sex worker group, which included the lead community researcher, Joyce Adhiambo, is that the initial reactions were all identical, namely:

  • “We are not vulnerable, we are being stigmatised, marginalised, abused and discriminated against.”

The difference is obvious, as explained in the next section.

6.3.2 Vulnerability Versus Stigmatisation, Discrimination, Marginalisation and Abuse

Vulnerability, like structural violence, is a term that does not need a particular actor who brings about hardship (Vorobej 2008). The extreme poverty experienced by the San parents, mentioned above, who cannot feed their children, is not directly attributable to other people. While one might speculate about what the government could do to reduce unemployment, which in turn could reduce poverty, the direct link to particular people is missing.

It is different for stigmatisation, discrimination, marginalisation and abuse, the words emphasised by the Nairobi sex workers. These are active words, which require other agents to do something, namely to discriminate against or to abuse a sex worker—for instance, as recorded in Chap. 4, discrimination within the family: “In my family I am not included in decision-making simply because I am a sex worker,” or by law enforcement agents: “When females are arrested the police start harassment by touching your private parts, without even bothering who is looking, in the pretence that they are doing a warrant search.”Footnote 1

While San representatives who contributed to the survey also spoke about being discriminated against, for instance by a teacher at school, this was much rarer than the equivalent being mentioned by the Nairobi sex workers.

  • The four stressors faced by the Nairobi sex workers, as revealed through the analysis of workshops and conversations stigmatisation, discrimination, marginalisation and abuse all directly involve others. The sex workers face hardships through specific other people, from their own families to the law enforcement agents who are meant to protect them.

6.3.2.1 Is Vulnerability Lost in Translation?

Despite initial struggles with a term for which there was no obvious equivalent in languages relevant to this author team (San languages, Kiswahili, Afrikaans and German), the term “vulnerable” was not lost in translation. For the San representatives involved in our research, it became a useful umbrella term in discussions about what makes them vulnerable to exploitation by outsiders, researchers included. What they also stressed was that the term should not be used in a patronising manner to block access to research that the community might need.

  • While the term “vulnerability” can be useful to groups who, for instance, struggle with severe poverty and social and economic challenges, it should not be used by outsiders to block access to research involving adult members of such a group. This is regarded as patronising interference in the lives of people who might benefit from research and who welcome long-term relationships of trust with researchers.

The research findings from the workshops and interviews with Nairobi sex workers also pointed to an appreciation of the term “vulnerability” to describe the various situations that expose them to exploitation and harm, but an emphasis on the four stressors the community face regularly was more important. They face stigmatisation, discrimination, marginalisation and abuse, which are all attributable to actions from specific people. Research by Human Rights Watch has found that

sex workers face physical, psychological, sexual, economic, and other forms of violence from a wide range of perpetrators, including police, clients, health care providers, government bodies, and others. Our research has repeatedly found that the criminalization of sex work … is one of the underlying causes … of much of this violence, making decriminalization a critical step in the eradication of violence against sex workers. (HRW 2024)

  • What endangers the lives, health and mental integrity of the Nairobi sex workers is, to a large extent, the criminalisation of an activity, sex work, that is relied upon to provide a livelihood for them and their families. In a context of severe poverty where other job opportunities might not be available, the criminalisation of sex work adds the burden of stigma and violence to the lives of the Nairobi sex workers. Their vulnerability to harm and exploitation – also in research – would be much reduced if their profession was decriminalised. South Africa is taking the lead on this topic (Wheeler 2022), but other countries such as Kenya could follow.

Undertaking research with people who face extreme poverty and extreme stigma is highly challenging, which is why protective exclusion from research made sense for such a long time. Only with the inclusion movements of the twenty-first century, most notably the “leaving no one behind” mission of the UN’s 2030 Agenda, has this been questioned more broadly.

  • Our contribution to resolving the protection-inclusion dilemma for at least some research in some communities has been to advocate and practise the prioritisation of research participant needs over researcher needs.

6.4 Enthusiasm for Research

The enthusiasm with which our research was greeted was considerable. Those we engaged with in the San community and the Nairobi sex worker community were extremely keen to help us find out more about how their vulnerability could be defined and reduced. And they were keen to contribute their knowledge and ideas in a search for solutions that used the methods of Socratic dialogue. This was also in line with a statement from the South African San Council, which invites applications for community approval from researchers as follows:

The South African San Council believes that research in our communities is of the utmost importance for the betterment of the people, but for years the San have been subject to exploitation from researchers. (SA San Council n.d.)

We believe that the enthusiasm for our research can be explained in two ways: long-term relationships of trust, and prioritising research participant needs over researcher needs.

6.4.1 Long-Term Relationships of Trust

The Wellcome Trust funding call for their Research Development Awards—a one-off scheme, to which we responded successfully—prioritised established relationships of trust over new collaborations by requiring evidence that the team worked well together. We thought this was an inspired move towards inclusive, equitable research. In contrast, one of the three reviewers for this book noted that “the fact that the two case studies are both from sub-Saharan Africa can be seen as a limitation”. Luckily, he or she also gave us this stamp of approval: “Excellent proposal, certainly should be published.”

However, the reviewer’s reservation still made us think. Our relationships of trust, developed over many years (see Fig. 5.2), were the reason why this team came together with these two vulnerable populations. Yet, we wondered, should we retro-engineer some kind of scientific justification for the involvement of the San and the Nairobi sex workers? We could, for instance, say that we had chosen the two communities because they represent the three main reasons for community vulnerability: severe poverty, ethnicity, and illiteracy (Gehlert and Mozersky 2018), one community based in a rural area and the other in an urban area. But this would have been tantamount to declaring that the UK team was the chooser, the group that, alone, decided which communities, and therefore which co-applicants, they wanted to work with. And yet communities and their gatekeepers have their preferences too. They prefer to work with teams with whom they have established long-term relationships of trust.

  • When working with vulnerable populations in research, we recommend prioritising long-term relationships of trust between the relevant communities and the research teams in any decision-making. This would also make it easier to involve representatives of the community in all stages of the research, from deciding about the topic of the research and obtaining funding through to dissemination, thereby leading to truly equitable research partnerships.

6.4.2 Prioritising Research Participant Needs over Researcher Needs

Having worked very closely with the San community and the Nairobi sex workers for many years also made it easier for us to take the next step in equitable research partnerships: to prioritise research participant needs over researcher needs.

We knew that, especially in the case of the Nairobi sex workers, any leak of personal data revealing that a person was a sex worker could bring them significant harm, even involving violence (see Chap. 4). We therefore decided to forego the collection of personal data and set out to obtain authentic input for our research that would not allow the identification of individuals. Hence, no record of names, no audio recording and no video recording. All information gathered in workshops or one-to-one conversations was collected anonymously in the form of written notes taken by facilitators known to the sex workers. As one of the sex workers gratifyingly put it:

I didn’t know that a discussion forum where personal details are not collected can be so liberating! We spoke without fear and poured our hearts out. It is the first time I have been able to talk about being threatened with death.

  • We are proud of the fact that we obtained excellent research results in the Nairobi sex worker community without collecting any personal data, and without any audio or video recording. Safe spaces for information exchange were created in collaboration with the sex workers. We believe this is a step that others could take to increase the number of research studies that are minimally risky and minimally burdensome, especially for vulnerable populations that are highly stigmatised.

In the San community, an aversion to personal data collection was not the main issue, but rather the San’s significant mistrust due to prior experiences with researchers. Here again, we tried something innovative, namely conducting almost all research through community researchers. We made this effort both in the San community and in Nairobi, and it is described as a full case study for the San (see Chap. 5).

  • The Nairobi sex workers who took part in workshops and one-to-one conversations never once met anybody from the wider team, either from South Africa or from the UK. For them, this was Nairobi-led research undertaken in Nairobi. Instead of the traditional bridge-building between (overseas) researchers and local communities through gatekeepers, our research was community-driven, community-led and, in the main, community-analysed.

The process was slightly different with the San community, as the PI had visited them many times and was known to many of the leaders. The South African team therefore asked her to join all workshops for short conversations via Zoom. Figure 6.1 shows such a meeting in August 2023, bringing the PI together with 11 community researchers, or “The Chosen Ones” (see Sect. 5.5.4), as well as Leana Snyders (far right) and Roger Chennells (front), two of the three group facilitators.

Fig. 6.1
figure 1

PI Doris Schroeder meets “The Chosen Ones” again

Full size image

The younger San seen in the picture are the ones who went out into the community and obtained views on what vulnerability meant to the San. As recounted in Chap. 5, even they faced mistrust, but persevered, hearing many sad stories and learning about their community, and did so in an attitude of humility, building trust and seeking information in a spirit of curiosity and collaboration.

The community researchers were selected during consultative workshops for their energy and enthusiasm for the topic, and their willingness to learn and to engage with others in respectful encounters to uncover new knowledge. They were involved in confidence-building activities and exposed to role plays, exchanging information and new ideas and having to present their thoughts and elicit information from others. They also co-designed the survey they were to take back to their communities.

In a guided exercise in December 2023, “The Chosen Ones” reflected on their journey as community researchers and described powerful images of growth, confidence, movement and personal development: from walking to riding a bicycle; from a small man alone and shy with no opportunities to a flourishing flowerpot; from a sunless heart at first, shy and reserved, to a candle giving light to others.

  • It was a privilege to work with “The Chosen Ones” for this team, and we cannot recommend working closely with community researchers strongly enough: recruiting them via workshops and training them via stories, humour and trust-building exercises.

6.5 Conclusion

As Fatima Castillo notes in the Foreword to this book, inclusive research with vulnerable populations can increase scientific rigour and ethical vigour. Indeed. But we want to go even further. The Wellcome Trust, which funded the research for this book through a Research Development Award, urged researchers to add excitement and fun to research. And even though we were working with vulnerable populations whose lives were blighted by extreme disadvantage and the discriminatory actions of others, the “can do” spirit and humour that prevailed at the workshops in Nairobi and South Africa were highly inspirational. It happened this way, we believe, because there was no “othering”, no potential exploiter, in the research relationships we built. As noted earlier, the research was community-driven, community-led and, in the main, community-analysed.

While we see trusted long-term relationships as the prime prerequisite for equitable research and for obtaining authentic input on difficult-to-resolve research questions, there are three areas we plan to develop further.

First, we want to strengthen our commitment to Socratic dialogue techniques in community-led research. If successful, this might resolve some of the main challenges recorded in the literature regarding research data obtained from community researchers. Community researchers, it is said, collect only superficial data, and it has been argued that they do not have the confidence to probe deeply enough. Both challenges could potentially be addressed with Socratic dialogue techniques, and early results involving “The Chosen Ones” are promising.

Second, we would like to accredit our type of training in some way so that the community researchers who gave us their time and energy can point proudly to a certificate, and be in a position to demonstrate transferable skills and, ideally, connect with different researchers in the future. Especially in the context of our book, this would be highly desirable, as leaving sex work is a key priority for most of the sex workers we engaged with, and in the San community unemployment is a major factor in poverty-driven hopelessness.

Third—and this is more of an aspiration in a world where research funding is usually tightly linked to very specific, technical questions—we would like to organise a set of consultation workshops, like those outlined in this book, with completely open questions: “What do you see as the main problem in your community?” “How do you think researchers could help?” “What can you do to help the researchers?” As Castillo writes in the Foreword: “As clearly evidenced in this book, communities like sex workers and Indigenous peoples, who suffer from the intergenerational impact of intersecting factors of discrimination, poverty and exploitation, can be dynamic, effective and crucial partners in research.”

Who knows what would happen if these dynamic, effective and crucial partners took the very first decision in research: namely, what is to be researched in the first place?

We hope our work provides a framework for others to consider, recognising the value of engaging with communities through relationships built on trust, respect, humour, equity and collaboration. Our approach challenges the protection-inclusion dilemma and demonstrates how leaving no one behind in research is possible, desirable and achievable.