Keywords

1.1 Introduction

“Leaving no one behind” encapsulates the 21st-century mission of inclusion. For the UN, it is “the central, transformative promise of the 2030 Agenda for Sustainable Development and its Sustainable Development Goals” (UNSDG n.d.). We believe that it should also play a role in refining research ethics for the twenty-first century.

Leaving no one behind in research is the vision of this book, and the first chapter will introduce the main ideas and link them to the remainder of the book. The focus will be on how community-led research may have the potential to significantly reduce the risks for certain vulnerable individuals and groups who take part in research.

We use the following definition of vulnerability:

To be vulnerable means to face a significant probability of incurring an identifiable harm while substantially lacking ability and/or means to protect oneself. (Schroeder and Gefenas 2009)

The definition includes a distinction between those who are unable to protect themselves from harm and exploitation in research because they lack the ability to do so, and those who may be unable to protect themselves from harm and exploitation in research because they lack the means to do so. The former (lack of ability) applies to all groups who are unable to provide informed consent, because they either are still developing the cognitive abilities required (e.g. children) or have temporarily or permanently lost those abilities (e.g. those in a coma or with severe, advanced Alzheimer’s disease). The latter (lack of means) applies to a wide range of groups who are said to be vulnerable, even though they could provide informed consent, prominent examples being pregnant women, persons in dependent situations and impoverished people.

Chapter 2 will present the results of a literature review on which specific groups are considered vulnerable in research today. A simplified preview is given in Table 1.1, which is based on an analysis of 57 ethics guidelines. There is a lot of disagreement in academic debates about which groups should be regarded as vulnerable in research (Hurst 2008; Solomon 2013), and more recently whether any groups should be labelled as such, or whether the result is overly patronising (Rogers et al. 2012), leading to additional victimisation (Wrigley and Dawson 2016).

Table 1.1 Vulnerable groups in research
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For this reason, the table is built on an analysis of current ethics guidance. The groups are split into those who can be said to lack the ability to protect themselves (i.e. who cannot provide informed consent) and those who may lack the means to protect themselves. To accommodate those for whom the distinction cannot be made readily, a heading of “unclear” is added to the table. The order in which the groups are listed corresponds with the frequency with which each group is mentioned as vulnerable in the ethics guidance analysed. Where groups overlap (e.g. refugee and minor), only the main grouping has been listed (e.g. refugee).

By far the majority of the groups listed in Table 1.1 are able to provide informed consent and could theoretically protect themselves from exploitation and harm by saying “no” to involvement in research. However, saying “no” can be difficult for many of those groups. For instance, people in the armed forces, prisoners, students and subordinate personnel might be subject to undue influence, as Table 1.2 summarises.

Table 1.2 Vulnerability based on the potential of undue influence
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This book was written in collaboration with representatives from the South African San community, an Indigenous group which has historically suffered severe trauma at the hands of outsiders (e.g. genocide by colonists), and representatives from an impoverished sex worker community in Nairobi whose contributions to research have been invaluable, for instance in HIV/Aids research. One of our methodologies (for the surveys described in Chap. 3) additionally involved 12 San community researchers who had no prior experience of being involved in research teams before our work began.

The book is not about individuals who are unable to provide consent. They are outside the scope of our work. Instead, our main focus is on two groups that are a subset of the groups listed in italics in Table 1.1: minoritised ethnic groups (who include Indigenous peoples) and impoverished people (who include most sex workers in low-income settings). The reason for limiting the focus to two specific groups is that the research for this book was fully inclusive, in that it was not about these groups but with and for these groups. We could not have completed this research in the time available without confining ourselves to two groups. We do hope, however, that our findings and recommendations apply to other groups too, and will offer evidence for broader application wherever we can.

This chapter is structured as follows. The first section briefly introduces the concept of leaving no one behind, as popularised by the 2030 Agenda (UNSDG n.d.). The second section links that concept to research. All the main possibilities for leaving no one behind in research will be identified, in order to situate and pinpoint the origin of the protection-inclusion dilemma. The third section applies the distinctions made in the first section to the dilemma identified in the second, that is, the protection-inclusion dilemma (Friesen et al. 2023).

What will become clear is that prioritising research participant needs over researcher needs can significantly reduce the risks to Indigenous peoples and sex workers involved in research and simultaneously increase their trust in researchers. Our experiments involved sacrificing the collection of personal data and obtaining all research input through community researchers. We carried out non-clinical health and ethics research, and leave it to other researchers and/or future studies to determine whether our findings may also be relevant to clinical research.

How the remaining chapters contribute to ameliorating the protection-inclusion dilemma is set out in Sect. 1.3. As we will be moving from a big topic—leaving no one behind—to increasingly specific topics, we present an overview of the main topics of the book in Fig. 1.1.

Fig. 1.1
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Main topics of book

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1.2 Leaving No One Behind

The concept of leaving no one behind became widespread in the development discourse when the Sustainable Development Goals (SDGs) were adopted by world leaders at a UN Summit in September 2015, and came into force on 1 January 2016 (UN n.d.). As the World Health Organization (WHO) describes them,

Sustainable Development Goals (SDGs) aim to transform our world. They are a call to action to end poverty and inequality, protect the planet, and ensure that all people enjoy health, justice and prosperity. It is critical that no one is left behind. (WHO n.d.)

The essence of leaving no one behind can be summed up in two main points.

1.2.1 Putting the Most Disadvantaged First

Prominently in the 2030 Agenda for Sustainable Development, the signatories assure readers: “As we embark on this great collective journey, we pledge that no one will be left behind … And we will endeavour to reach the furthest behind first” (UN 2015). The second part of the pledge has been taken up regularly by others. For instance, “Reaching the furthest behind first is the answer to leaving no one behind” was the key message of a panel of prominent civil society activists, global experts and local leaders attending a meeting of the High‑Level Political Forum on Sustainable Development (UN-DESA 2017). The UN plea to put the furthest behind first is reminiscent of John Rawls’s “difference principle”.

Simplified, the difference principle makes benefits for the least advantaged the decisive factor in agreeing on whether a society is just, or, as Rawls put it, “the higher expectations of those better situated are just if and only if they work as part of a scheme which improves the expectations of the least advantaged members of society” (Rawls 1999: 65). According to van Parijs (2003: 200),

Few components of John Rawls’s political philosophy have proven so epoch-making as what he somewhat oddly called the “difference principle”. None has exercised as great an influence outside the circle of academic philosophers.

Similarly, in the words of Mahatma Gandhi: “Recall the face of the poorest and the weakest person you may have seen and ask yourself if the step you contemplate is going to be any use to them” (Watkins 2014). (In this book we use the terms “most disadvantaged” and “most marginalised” as synonyms for “furthest behind” and “least advantaged”.)

1.2.2 Including the Voices of the Most Disadvantaged

Not only are the most disadvantaged to be helped first, but the process of formulating the SDGs also “paid particular attention to the voices of the poorest and most vulnerable” (UN 2015). This is reminiscent of a groundbreaking book published by the World Bank, Can Anyone Hear Us? Voices of the Poor, which collected the voices of over 40,000 poor people in 50 countries, who were asked what poverty meant to them and how it should be measured (Narayan et al. 2000). This type of inclusion namely, listening to those whose challenges are to be overcome is also a cornerstone of equitable research (Schroeder et al. 2019).

The next section explores what leaving no one behind in research could mean.

1.3 Leaving No One Behind in Research

Leaving no one behind in research can mean many things. Table 1.3 summarises the main possibilities. The list may not be complete but will suffice to show where the book’s focus lies and identify the origin of the protection-inclusion dilemma, which will be discussed later. The elements of the table align with the stages of the research process, and each of these points is discussed in more detail below. Smith (1999: 10) touches on all the issues when she asks:

Whose research is it? Who owns it? Whose interests does it serve? Who will benefit from it? Who has designed its questions and framed its scope? Who will carry it out? Who will write it up? How will the results be disseminated?

Table 1.3 Example meanings of leaving no one behind in research
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1.3.1 Research Focus

The research enterprise commonly starts with decisions about which areas and topics are to be researched. For instance, in 1990, the Council on Health Research for Development discovered that only 10% of health research resources were spent on countries that saw 90% of preventable deaths worldwide (CMAJ 2004): the 10/90 gap. Thirty years later, “the imbalance between research needs and research efforts persists as most of the research effort concentrates on diseases affecting high-income countries” (Yegros-Yegros et al. 2020). In the context of leaving no one behind in research, it would clearly be in the interests of marginalised people if research efforts were better matched to their research needs.

1.3.2 Research Positions

Who has designed the research questions and framed their scope?Footnote 1 Who will carry out the research? Who will write it up? These questions from Tuhiwai Smith are about the researchers, the vast majority of whom are based in high-income countries with a high statistical likelihood of being white and male. “Taken together, the G20Footnote 2 countries boast 88.8% of the world’s researchers, 93.2% of research spending and 90.6% of scientific publications” (Naujokaitytė 2021). In a 2021 Nature survey among scientific researchers, “82% of respondents in the United Kingdom, 81% in Germany and 74% in the United States identified themselves as White” (Woolston 2021). At the same time, fewer than 30% of researchers worldwide are women (Shannon et al. 2019). Even though researchers generally have a university education and are therefore unlikely to be among the most disadvantaged that the “leaving no one behind” agenda targets, it is crucial that leaving no one behind in research includes ending all forms of discrimination or biased practices, such as appointing people who are similar to oneself (affinity bias) (Gibney 2022).

1.3.3 Involving Communities and Participants in Research

The research enterprise often includes local communities—as in the case of climate change research, which requires access to soil (Jansson and Hofmockel 2020)—or research participants, as in the case of most medical research. As Apolot (Nelson et al. 2021) notes in the context of leaving no one behind in research:

Your life as a researcher will get much easier if you listen … when you design and do everything with the community, instead of imposing your ideas on them, then the process will work much better.

Equitable engagement with local communities and research participants brings leaving no one behind in research into the realm of research ethics. It is not only beneficial for the research, as Apolot notes, to work closely with local communities and research participants, but also fairer, especially when vulnerable people and power imbalances are involved (Schroeder et al. 2019).

1.3.4 Involving Pregnant Women in Research

At first sight, the demand to include pregnant women, and by implication their foetuses, in research (possibly as an example for other vulnerable populations) looks very similar to all the other calls, as though equity reasons should drive inclusion demands. Pregnant women are commonly regarded as a vulnerable group (Table 1.1), and this perception has led to their widespread exclusion from research (Ballantyne and Rogers 2016). According to Ballantyne and Rogers (2016), there is a tendency towards blanket exclusion rather than risk mitigation, because how pregnancy renders a person vulnerable is not well defined. The result of this blanket exclusion from research is a gap in medical knowledge, with repercussions for medical practice. In this example, excluding pregnant women from research leaves the knowledge base on safe and effective medication for use during pregnancy missing or incomplete, potentially resulting in significant harm to pregnant patients in general (Zur 2023).

A closer look reveals that pregnant women are left behind as a group because it may be too risky for certain individual pregnant women to take part in medical research. However, if some pregnant women were to accept the risks of potential harm for themselves and their foetuses, all pregnant women and public health could gain. This distinction between the individual on the one hand and the group and public health on the other hand is different for the other cases listed in Table 1.3, as explained below. It explains the essence of the protection-inclusion dilemma. Let us look at the last possibility for not leaving groups behind in research before we return to that point.

1.3.5 Research Benefits

Who will benefit from the research? This is one of Tuhiwai Smith’s most powerful questions. “Those who are paid to do the research” is one narrow answer, aligned with Tuhiwai Smith’s (1999: 3) criticism that unwanted research in her community “suggested things that would not work, and made careers for people who already had jobs”. However, in line with the Universal Declaration on Bioethics and Human Rights (UNESCO 2005), we take the benefits of research to mean the fruits of research: for instance, insights into how to improve processes, or innovative products and services.

The Leave No One Behind: Strengthening Health Systems for UHC and the SDGs in Africa report by WHO Africa (2017) calls for health services that are “responsive to the population needs and provided in a manner that guarantees equitable access” (WHO 2017: 3). This aligns with access to the fruits of research, in the sense of, for instance, access to medical products for everybody.

According to Jeffrey Sachs, “there is enough in the world for everyone to live free of poverty and it won’t require a big effort on the part of big countries to help poor ones” (Xinhua 2018). Access to the fruits of research is possibly the most urgent of the five goals discussed here, as it has the potential to reduce preventable mortality and morbidity in the most disadvantaged populations most quickly. And it does not have to be medical research. Poor nutrition, indoor air pollution and lack of access to proper sanitation and health education are major contributors to poverty-related preventable mortality and morbidity, and questions about reducing indoor air pollution could be addressed, for example, through research undertaken by engineers (Smith 2002).

Based on the distinctions drawn in Table 1.3, we now explain the protection-inclusion dilemma in research.

1.4 The Protection-Inclusion Dilemma in Research

The protection-inclusion dilemma occurs at one particular research stage, implementation (Fig. 1.2).

Fig. 1.2
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Main stages of research

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Research implementation has been highlighted in red in Fig. 1.2 for the following reason. Of the five stages of researchFootnote 3 listed, only one can often be risky and burdensome, and then only for a subset of the people involved, and that is research implementation. While research implementation can carry some risks for researchers, such as health and safety risks in work with infectious agents, it is mostly research participants who endure risks and burdens in research. By taking part in research, they enable the process of science and wider community benefits such as new products, services and processes.

This dilemma is similar to other dilemmas where the wider community benefits from the actions of a small group. For instance, Germany now generates over 40% of its electricity from wind, sun, water or biomass (BMWK n.d.), yet individual villages are often opposed to wind farms “in their back yard” (Bürgerbegehren Rettet den Dömlingsberg n.d.). A typical argument from such a village is that while the benefits of green electricity may be enjoyed by all, wind generators uglify their particular landscape (Bürgerbegehren Rettet den Dömlingsberg n.d.). This is the scenario from which the protection-inclusion dilemma derives.

Inclusion is often regarded as an incontrovertibly good thing. For instance, UN Women argue, referring back to the 2030 Agenda and the SDGs, that “women’s equal participation and leadership in political and public life are essential to achieving the Sustainable Development Goals by 2030” (UN Women 2023). And inclusion is clearly a good thing for four out of the five stages set out in Table 1.3—inclusive research focus, inclusive hiring of researchers, inclusive research engagement and inclusive research benefits for humanity—but not when it comes to the inclusion of vulnerable groups or individuals in research.

The inclusion of research participants in research (and of villages among the locations of wind farms for the benefit of the broader community) is not necessarily a good thing for all involved, because potential harms and burdens are carried by a small group for the benefit of a larger group.

The fact that in research some carry risks and burdens for the benefit of others is a dilemma that is particularly pressing when research participants are from a vulnerable group. The Declaration of Helsinki therefore imposes significant restrictions on such research:

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 other words, the Declaration of Helsinki protects vulnerable individuals from potential harm and exploitation by excluding them from most medical research, which is protection through exclusion. Because leaving no one behind is the diametric opposite of exclusion, we consider in the next section how the two constituent parts of leaving no one behind identified earlier can assist in addressing the protection-inclusion dilemma in research.

1.4.1 The Most Disadvantaged First in Research?

The first point we identified from the “leaving no one behind” mission of the 2030 Agenda was the ambition to put the most disadvantaged first. How would that work in research implementation, and what implications would it have for research ethics?

Staying within the framework of Rawlsian analysis, the “most needy members of society [are those that]… lack basic necessities such as food, shelter, and safety” (Green 2013: 124). This Rawlsian-inspired definition of the most disadvantaged aligns with the first two SDGs, which aim to fight poverty and hunger (UN-DESA n.d.).

One could argue that the protection-inclusion dilemma is at its harshest in this group. To avoid a double burden, one could reasonably say, those who are already highly disadvantaged should not be burdened with involvement in research. Table 1.4 provides examples of types of research that have harmed research participants in the past 20 years, with one example from 30 years ago. All examples focus on vulnerable populations as listed in Table 1.1.

Table 1.4 Studies in which vulnerable populations have incurred harm through research involvement
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The cases listed in Table 1.4 focus on adults who had the ability to provide informed consent and who took part in a variety of research studies, not just clinical research. They were harmed as a result. Being involved in research is not only potentially harmful but also burdensome in the time required for the study itself and for the informed consent procedure. For instance, a study evaluating the informed consent process for clinical research in the UK and Ireland found that the “mean time taken for the research participant’s last informed consent discussion was 51 min” (O’Sullivan et al. 2021). For one person, the discussion took 300 min (O’Sullivan et al. 2021).

Given the above examples of harm done to individuals from vulnerable populations who took part in research, protection through exclusion seems to be an approach that makes sense for the most disadvantaged groups, the target of the “leaving no one behind” agenda. In terms of the Declaration of Helsinki, research involving these groups would still be possible if it could not be undertaken on a non-vulnerable group, if it aligned with the health needs of the vulnerable group and if the results of the research were accessible to the group (WMA 2013: Art. 20). However,

A central challenge at the heart of planning and reviewing research involving vulnerable populations is a paradox that overprotection can block needed research, while research without adequate support and benefits can worsen vulnerabilities. (Molyneux et al. 2021)

One answer to the protection-inclusion dilemma that has been emerging strongly over the past decade consists of avoiding the categorical approach to vulnerability (Gordon 2020) and focusing on situations that make people vulnerable rather than labelling entire groups as such (Gordon 2020). Hence, it is wrong to use a black-and-white approach which assumes that somebody is either vulnerable and ought to be excluded from research or not vulnerable and therefore fit to be included in research. Such an approach

does not account for variation in the degree of vulnerability within the group based on individual characteristics, and classifies certain persons as vulnerable rather than identifying situations in which individuals might be considered vulnerable. The alternate contextual approach allows for a more nuanced understanding of the nature of the vulnerability than the categorical approach and therefore a more focused approach to safeguards. (Gordon 2020)

A contextual approach also takes account of the significant difference between those people who are vulnerable because they lack the ability to defend themselves against exploitation (e.g. those with very advanced Alzheimer’s disease) and those who lack the means to defend themselves against exploitation (e.g. impoverished, illiterate people). The situation of the latter group may be transient, in that they may learn to read and may find a way of making a secure living. In that case, they would previously have been in a situation of vulnerability. We fully agree with this approach, which has also been taken by some ethics guidance drafters.

For instance, in 2018, the International Ethical Guidelines for Health-Related Research Involving Humans by the Council for International Organizations of Medical Sciences (CIOMS) noted that they did not want to label “entire classes of individuals as vulnerable” (CIOMS 2016: 57). 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).

We would like to turn to another approach to resolving the protection-inclusion dilemma for at least some types of research and at least some vulnerable groups. We want to focus on the minimal risk, minimal burden element of research. This exemption from involvement in research for vulnerable populations even applies to those who are unable to consent. The Oviedo Convention (Council of Europe 1997) allows research involving participants who are unable to consent if the research has the potential to benefit the group and if it “entails only minimal risk and minimal burden for the individual concerned” (Council of Europe 1997: Art. 17(2)(ii)). Likewise, the Declaration of Helsinki allows research with those unable to give consent if it can “promote the health of the group represented by the potential subject, the research cannot instead be performed with persons capable of providing informed consent, and the research entails only minimal risk and minimal burden” (WMA 2013: Art. 28).

It might be assumed that research entailing minimal harm and minimal burden can always involve vulnerable individuals if all other relevant requirements are observed (a match to research needs, informed consent, community approval and access to results). However, this is not the case. Such research can be blocked for a variety of reasons, all related to the labelling of particular groups as vulnerable and the recommendation to protect them through exclusion. Research can even be deterred for the sole reason that research ethics committees are likely to exclude vulnerable groups from research anyway.

For instance, a UK study found that the reason why prisoners were rarely involved in research was not so much that it was impossible to address ethics concerns, but that researchers regarded the burden of overcoming governance hurdles as too great (Charles et al. 2016: 1). Or, as we will see in Chap. 2, research involving vulnerable populations in low- and middle-income countries (LMICs) is blocked by research ethics committees from high-income countries (HICs) in an act of “remote paternalism” aiming to protect via exclusion. This can also happen because the “culture of ethics review … has been considered overly risk averse” and “protectionist in nature” (Friesen et al. 2023).

Instead, as the CIOMS (2018) guidelines recommend, better mechanisms for protection in research are needed as a more nuanced way to protect vulnerable populations. If the research only involved minimal risk and minimal burden, this would be an ideal way of moving forward.

One possible obstacle to this approach is that not much research seems to satisfy the criterion of minimal risk and minimal burden. In fact, as the Declaration of Helsinki notes: “In medical practice and in medical research, most interventions involve risks and burdens” (WMA 2013: Art. 16).

We believe that the potential exists to increase the number of research studies that could meet the description of minimal risk and minimal burden, if scientists were willing to look critically at their methods. In other words, opportunities for minimally risky and minimally burdensome research involving vulnerable populations could be increased by deprioritising traditional methodological scenarios.

As we will see in Chap. 4, many Nairobi sex workers are highly reluctant to take part in research that collects personal data. There is a particular fear that involvement in research will reveal to third parties, such as landlords or family members, that the person earns his or her living with sex work. An even greater fear, taking into account that sex work is illegal in Kenya, is that personal data will be revealed to law enforcement agents. Chap. 4 will explain some of the consequences of revealing sex work as an occupation to outsiders—consequences that include rape and other violent abuse.

By undertaking research without personal data collection, one can prioritise research participants’ interests over researchers’ interests. Working with two communities that suffer from high stigmatisation, we sacrificed—from a researcher’s perspective—the benefit of obtaining personal data from research encounters with these communities. Research for this book involved data from 239 South African Indigenous San community members, 19 highly marginalised Nairobi sex workers, and just under 90 delegates from both groups who took part in consultation workshops, but no personal data were recorded for research purposes.

South African San community members are also often reluctant to take part in research because of previous community experiences of exploitation. When recounting the drive towards the San Code of Research Ethics, San leaders recalled:

The San peoples … have been the object of much academic research over the past centuries. In recent years San leaders have, with increasing confidence, arrived at the conclusion that most academic research on their communities was neither requested, nor useful, nor protected in any meaningful way. In many cases, dissatisfaction if not actual harm was the result. (Chennells and Schroeder 2019: 4)

Tailoring our methods to the needs and wishes of the San community, and trying to respond to the mistrust generated by prior encounters with researchers for whom the extraction of knowledge, samples or data had been paramount (Chennells and Schroeder 2019), we obtained all data through community researchers, and there was no in-person engagement between community members and overseas researchers.

We applied the two approaches—no collection of personal data and all research engagement conducted through community researchers—to our research in both communities. We hoped that these two measures would increase the possibility of conducting research with vulnerable groups in a minimally risky and minimally burdensome way. This would then counteract the exclusion approach to protecting vulnerable groups in research sometimes taken by research ethics committees (Chap. 2). Why? Because the Oviedo Convention and the Declaration of Helsinki both allow minimally risky, minimally burdensome research that is tailored to local research even when the participants are unable to provide consent (Council of Europe 1997: Art. 17(2)(ii), WMA 2013: Art. 28). Hence, it should certainly be acceptable for those who are regarded as vulnerable but still able to consent.

1.5 Voices of the Most Disadvantaged Heard?

The second part of the mission to leave no one behind set out earlier is the obligation to ensure that the most disadvantaged are heard. From a research benefit perspective, this aligns with best practice whenever a service is developed for the disadvantaged. For instance, Lathrop et al. (2022) observe: “Respecting people, hearing their stories, and inviting them to share their stories” can contribute to the empowerment of marginalised communities. Livingston (2018) advocates listening to the marginalised as a way of supporting them, when he says that “by listening to individuals’ concerns, we not only connect with their need, but help personalise the experience of support provided” (Livingston 2018).

However, one of the main challenges of this approach is mistrust of researchers on the part of communities and individuals. The following factors have all contributed:

  • long-standing, including colonial, exploitation (Smith 1999)

  • 21st-century ethics dumping (Schroeder et al. 2018)

  • the impact of exploitation by non-researchers, e.g. the media, on the relationship with researchers (Chennells and Schroeder 2019: 19)

  • patronising or culturally inappropriate practices (Schroeder et al. 2021).

These factors are also why a considerable literature exists on how to reach hard-to-reach groups (Van der Ven et al. 2022).

In the cases of the two highly stigmatised and marginalised groups represented in this book, the South African San and the Kenyan sex workers, we found a way to listen while not intruding unnecessarily into the private spheres of those who contributed to the research.

Working closely throughout all research stages with the two communities, who are also represented among the authors 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 an alternative to exclusion from research, namely research led by vulnerable groups for vulnerable groups. We hope this book shows that the approach worked, at least for ethics research on the topic of vulnerability and within the domain of non-clinical health research (e.g. an increase in HIV infections). Table 1.5 summarises the structure of the book.

Table 1.5 Structure of book
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