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  • Published: 04 March 2023

The biomedical securitization of global health

  • Jens Holst   ORCID: orcid.org/0000-0002-0896-1549 1 &
  • Remco van de Pas   ORCID: orcid.org/0000-0002-6098-334X 2 , 3  

Globalization and Health volume  19 , Article number:  15 ( 2023 ) Cite this article

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The COVID-19 outbreak has shifted the course in the global health debate further towards health security and biomedical issues. Even though global health had already played a growing role in the international policy agenda, the pandemic strongly reinforced the interest of the media, the general public and the community in cross-border infectious diseases. This led to a strengthening of the already dominant biomedical understanding of global health and the securitization of health in foreign policy.

This paper critically provides a narrative, iterative review of the health security literature available to date, with a special focus on the development of the currently prevailing concept of health security and the dual trend towards the securitization and biomedicalization of global health.

In a world increasingly determined by power asymmetries, unequal distribution of opportunities and resources, and inadequate governance structures, securitizing health has become a key feature of global governance. Health security is predominantly based on a concept that neglects the global burden of disease determined by non-communicable conditions rather than by infectious diseases. Moreover, it exhibits a trend towards biomedical solutions and neglects root causes of global health crises.

Conclusions

As important as health security is, the underlying concept driven by biomedical and technocratic reductionism falls short. It widely neglects the social, economic, political, commercial and environmental determination of health. Beyond improved health care and prevention, health-in-all policies are ultimately required for ensuring health security and reducing one of its main challenges, health inequalities within and between countries. Global health security must first and foremost seek to guarantee the universal right to health and therefore emphasise the social, economic, commercial and political determination of health.

Introduction

The COVID-19 outbreak has highlighted the continuing menace to humanity of global health issues that had been suppressed and considered under control, at least in the Global North. The massive warfare activities in Ukraine in the third year of the pandemic have reawakened the sense of threat particularly in Europe. Both the pandemic and the war, as well as the escalating climate crisis, have made global insecurity more tangible. The existing and likely crises caused by these unfortunate occurrences – mass displacement, increasing prices for products of basic needs such as food and energy, and the overall severe impact on global economy—will burden people in low-income countries most but not at all exclusively [ 1 ]. Especially the fatal effects on future generations [ 2 ] understandably reinforce the desire for a safer world. Enhanced security is needed in times of growing uncertainty, threatened ancestral rights and dwindling opportunities for a large part of mankind. The current global order has therefore been aptly described as a world risk society [ 3 ].

Even if this need for security is comprehensible, the nature of the security discourse in global health and beyond raises fundamental questions and concerns. Instead of pursuing common objectives, such as social stability, global public goods, equity or social justice, and recognizing shared responsibilities by governments across national boundaries, security policies predominantly envisage biomedical threats such as infectious diseases, more or less openly admitting that the focus is on the autonomy of nation states and safeguarding the existing status quo in international relations, however unfair they may be [ 4 ]. The utopian exuberance that led to the founding of the WHO and other United Nations (UN) organizations is thus giving way to a pragmatic, predominantly biomedical realism that undermines rather than promotes people’s rights and legal entitlements, as enshrined in the Universal Declaration of Human Rights and in the WHO constitution [ 5 ].

The SARS-CoV-2 pandemic has highlighted the extent to which global and public health has become dominated by biomedical approaches. Politicians, policymakers and the media provided virologists and epidemiologists a paramount role in dealing with the pandemic. For a considerable time, they provided the main evidence base for partly far-reaching measures and restrictions. The strong, near-exclusive focus on biomedical sciences and their assessment of the pandemic situation led to the initial ignorance of the non-medical, social determination of health. In Germany, for example, it took the dominant COVID-19 experts and political decisionmakers 14 months to even notice the pronounced socio-economic differences in the burden of the coronavirus infection [ 6 ].

The ongoing debate about the COVID-19 pandemic and its interrelation with health security does not sufficiently put the spotlight on the structural causes of global health crises. Despite overwhelming evidence of the social determination of health, political leaders, the media and an influential part of global health actors have focused first and foremost on biomedical approaches [ 7 ], while often underestimating or even ignoring the close relationship between socioeconomic status, living conditions and unhealthy lifestyles on the one hand, and both the burden of non-communicable diseases and the severity and lethality of COVID-19 infections on the other [ 8 , 9 ].

A narrative, iterative review of the available literature on health security indicates an increasing biomedicalization of public health that has contributed significantly to making the linkage between health and security the priority discourse in global health and its governance. Security aspects and considerations have gained both acceptance and importance in the last decades. The quest for security is understandable in an increasingly inequitable, unstable and disjointed world, particularly vis-à-vis the militarization of conflicts and international relations. But a closer look at the concept of health security makes things appear more complicated. It often remains unclear what is meant by this form of security, who defines it and who is being targeted by security policies as well as how health security is to be generated [ 10 ]. Health security remains centred on the security of nation states and defence against international threats, rather than prioritizing people’s health and its determination [ 11 ]. Policymakers in high-income countries tend to emphasise protection of their populations particularly against external threats, for example bioterrorism, zoonoses and pandemics, whereas many—but not all—global health professionals understand the term in a broader context of social health protection, population health and its determination [ 12 ].

Over the last two decades, global health security has often become virtually and almost interchangeably synonymous with global health [ 13 ]. However, this perspective rather exhibits a conceptual narrowing than epistemic clarity. Global health security is actually but one area of the global health domain, as it primarily addresses cross-border health threats but not the whole span of global health policy [ 14 , 15 ]. Meanwhile, a universal definition of global health security is still lacking, despite the abundance of available literature on human and (global) health security. The recent attempt of the WHO, as the United Nations (UN) agency specialised on health, to define global health security falls short as it focuses predominantly on the international spread of acute infectious threats [ 16 ]. The fact that the use of the term “health security” by different actors is as widespread as it is inconsistent is by no means attributable to the difficulty of achieving conceptual clarification, but rather to the widely divergent perceptions, interests, priorities, politics, and power relations that exist in the broader field of global health [ 17 ]. Despite its widespread use, the World Health Assembly has not yet agreed on a resolution on the concept of ‘health security’, indicating that its scope is contested among member states [ 18 ].

Health security in international foreign policy

Already before the COVID-19 outbreak, global health was high on the international political agenda and played an important role at summit meetings of international fora of high-income and emerging countries such as the “Group of 7” (G7), and the “Group of 20” (G20) [ 19 ]. However, the prevailing global health security approach tends to be insufficient for adequately catering to the complexity of challenges. There is a need to harmonise the contemporary security debate with other fundamental health-policy challenges from an equity perspective [ 20 , 21 ]. Current global health programmes often fail to fulfil the claim to universalism implicitly associated with the term “global” and tend to neglect the requirements of a comprehensive transdisciplinary and interdisciplinary understanding of health security policies. There is still a large discrepancy between the current state of knowledge on improving health security, equity and actual global health politics and practices [ 22 ]. This trend is partly attributable to the unexpected resurgence of epidemic risks that were considered defeated or at least controllable in high-income countries in recent years.

Since the last two decades, a rapid (re)-emergence of pathogenic infectious diseases has been seen in several regions of the world, including, but not restricted to, diseases such as SARS, avian influenza, Ebola, Zika, and most recently, COVID-19. These outbreaks have each led to the application of control measures around the world and strongly influenced the global health debate in which securitization has become a prevalent and common theme among global health scholars and practitioners [ 23 ]. At the same time, other health threats such as tuberculosis, malaria, or chronic conditions like cardiovascular diseases and diabetes mellitus persisted. However, neither poverty-related infections nor the growing prevalence of non-communicable diseases have ever received the attention they deserve due to the continuous upward trend, particularly in countries in transition [ 24 ].

Notwithstanding this alarming global burden of disease trend both in the Global North and South[ 25 ], it is not the major killers, but the rapid succession of transnational ‘health crises’ caused by viral infections that repeatedly provoke a state of alert and make the headlines. However, public interest in the general health-related challenges of other countries and continents is usually short-lived and transient. In low-income countries the situation is fundamentally different. Certain health hazards persist and the risk of ‘endemic’ diseases and their underlying ‘syndemics’ is part of everyday life [ 26 ]. In the course of epidemiological transition, the disease spectrum is increasingly expanding or even shifting from infectious to non-communicable, chronic diseases. During the last decades, societies in the Global South and elsewhere have been facing a double burden of disease caused by bacterial, viral or other pathogens on the one hand, and health problems commonly referred to as non-communicable diseases (NCD’s) on the other [ 27 ]. The simultaneous coexistence of undernourishment, malnutrition or dietary overweight exacerbates the situation [ 28 ].

Securitization of global health

Global health has become an important area of foreign and security policy and hence of international diplomacy [ 29 ]. In fact, the UN Security Council has addressed health beyond the issue of epidemics and pandemics and taken the role of a forum to debate and negotiate global health issues; this reflects primarily the political interests of the permanent five, particularly the USA [ 30 ]. Health security often shapes the global health debate more than other health issues. Security is frequently encountered as a contextual framework in political health and foreign-policy documents, and the securitization of health has for some time now been considered a key feature in global health governance [ 31 ]. Security practices and medical knowledge share a common evolutionary history; to consider and analyse them as independent of each other would be to ignore the historical formation of nation states and also the colonial roots of global health [ 32 ].

Security is one of several global health “frames” that are by no means exclusive, but have been driven in recent decades by a deep core of neoliberal values [ 33 ]. This implies that in contemporary global health governance there is an overemphasis on agency, while deeper structures, including its embedded ideas and configurations of powers, are neglected [ 31 ]. As such, neoliberalism has become the globally “hegemonic paradigm” during the first two decades of the twenty-first century [ 34 ]. Covid-19 and viral neoliberalism must be understood as co-pathogeneses whereby the corona-virus pandemic has disclosed and reinforced global health insecurities due in large part to market-driven policies and neoliberal practices; the combination of societal inequalities, weakened response capacity by marketized health systems and biomedicine-oriented global health governance have created vectors of vulnerability [ 35 ].

The health security paradigm has its roots in concepts of risk mitigation and adaptation [ 3 ]. The Ebola outbreak in Western Africa in 2014–2015 has been important for the paradigm shift in global health policy. Since then, experts and politicians have been discussing the establishment of heath emergency funds, the formation of rapid reaction medical forces (‘white helmets’), as well as the creation of robust care structures and resilient health systems [ 36 ]. The 2015 Johannesburg Summit on China-Africa Cooperation identified Public Health as one of the cornerstones for foreign policy action in the China-Africa cooperation [ 37 ]. During their 2017 Berlin meeting the health ministers of the G20 countries simulated the necessary measures for combating future pandemics [ 38 ]. However, the prevailing reasoning does not aim to address the structural causes of potential threats [ 39 ], but serves as “a form of immunization to have societies and systems become more resilient in dealing with future risks” [ 40 ]. In this light, one should also analyse the process for establishing an international pandemic treaty, under WHO auspices, as a global normative framework for the preparedness and response to future pandemics [ 41 ]. This pandemic agreement, which at the time of writing is under negotiation by WHO member states, deserves critical scrutiny as its focus ought to be on people’s health, not merely national security. Creating genuine global health solidarity focused on human security requires a new pandemic agreement that mandates the sharing of technologies, scientific capacities and finance in future pandemics [ 42 ]. Wenham and colleagues argue that the key tension of the pandemic treaty is rooted in globalist ideals of what the perfect pandemic governance should look like, yet “that it seems to have little regard for the realities of the statist, securitized landscape that exists for responding to pandemic threats… Even something as big as a major global pandemic is not sufficient to get governments to think beyond national interests” [ 43 ].

Blurred lines between hard and soft security practices

To a large extent, health security is viewed as a mainly biomedical challenge determined by biological dysfunctions and disturbances of the homeostatic state of the body. The guiding concepts for infectious disease control are based on the extended bacteriological model developed towards the end of the nineteenth century by the German physician and microbiologist Robert Koch, who discovered the specific causative cell-agents called bacteria, which cause fatal infectious diseases such as anthrax, tuberculosis, and cholera. Until today, despite all knowledge and empirical evidence about the enormous importance of non-biological influences on disease and health [ 44 ], the perception of health threats and the shape of health security are still dominated by a biomedical scientific approach derived from Koch’s “cellular pathology” [ 45 ]. Natural science medicine is considered to have made an important contribution to the increase in global life expectancy—even though social and environmental advances and the general improvement of living conditions worldwide have contributed to this in the first place—and is therefore considered to be a historically successful framework model for the prevention and treatment of infectious diseases [ 46 ]. Moreover, the biomedical understanding of health problems and the resulting importance of healthcare provision are plausible and relatively easy to explain and understandable for the general public [ 47 , 48 ].

Notwithstanding this widespread perception, the biomedical concept is not conducive to adequately address the underlying conditions between public health status and disease outcomes. Already in the context of clinical conditions, biomedicine faces challenges vis-à-vis treating mental health problems or chronic degenerative diseases and their multifactorial causes that are prevalent worldwide today. Biochemical causal chains, organic defects or epigenetic variables and “markers” cannot be verified with certainty for numerous physical diseases and dysfunctions. Fundamental questions about the validity and relevance of the scientific biomedical paradigm therefore remain warranted [ 49 ]. This paradigm systematically neglects the consideration of non-medical variables and thus the social and ecological determination of health [ 50 ].

The dominant perception of health security as a defence against acute health threats openly reflected in high-level political statements about the “war on COVID-19” [ 51 ], is consistent with the (historical) involvement of defence forces in epidemic disease control [ 52 ]. In many countries, the military provided active and highly visible logistical support to the health sector in COVID-19 vaccination campaigns [ 53 ]. A few years ago, at the height of the Ebola crisis, “Médecins sans Frontières”, which otherwise rejects any proximity to the armed forces [ 54 ], demanded support from soldiers in controlling the epidemic and related social unrest [ 55 ]. Due to the increasing number and brutality of protracted armed conflicts and the growing need for humanitarian assistance, even NGO aid is increasingly becoming securitised with many organizations having to employ security personnel [ 56 ]. Ebola made it onto the agenda of the UN Security Council, and for the first time in the history of the UN, a mission to control a disease was established in the form of the “UN Mission for Ebola Emergency Response” [ 57 ]. While militarization is not the same as the securitization of health [ 58 ], the involvement of (armed) defence forces has contributed to the shaping of the global health security discourse. The military backing of state responses to national health threats has enforced the security narrative and thereby mobilised patriotic emotions of the general public which contradict the universality and shared responsibility required to foster global public goods for health [ 59 , 60 ].

Systemic shortcomings of global health security

Health security policies deal with future risks in such a way that they do not endanger the status quo of current political-economy inequalities and power relations. De Waal aptly notes that COVID-19 is not the nemesis of radical capitalism, but that rather “ the two parasitize on one another’s disruptive politics ” [ 61 ]. It is not the attention to the actual structural determinants of the pandemic that is at the centre of current political considerations, but rather the question of how to enable efficient crisis management [ 62 ]. The focus has been on how public health risks emerging from the animal world and environmental conditions can be identified and contained as early and directly as possible. The recent example has been the COVID-19 pandemic, which was governed by lock-down policies, a series of restrictions on socio-economic life and even curfews in many countries, as well as mass vaccination campaigns. Only few have raised the question of the upstream causes of the outbreak, amongst others the organization of food production in times of neoliberal globalization [ 63 , 64 ]. The current global health security strategies and its financial mechanisms are not necessarily aimed at the protection of those who are most in need of social and human security—the poor and the marginalised. Instead, they pursue protecting the property, vested interests and privileges of the better-off [ 65 ]. Or to say it more bluntly; safeguarding the imperial way of life of some at the expense of many [ 10 ]. For overcoming the colonial and imperial heritage and addressing relevant health policy issues, global health needs to be decoupled from the global security approach, rather than deepening the connection [ 66 ]. This will require an extensive political process that must link a broader human security perspective to a systemic health-in-all approach that allows government efforts and investments to be regulated.

Less biomedicine, more public health

Global health always contains a normative dimension, and global health practices and research, including on security matters, require normative premises that cannot be based solely on empirical evidence [ 67 ]. A moral language and deliberative process is requisite for ethical considerations that go beyond national, sovereign interests. At the same time, legal jurisdiction is needed for setting the rules of global health governance and remains best guided by human rights covenants [ 68 ]. The level of international negligence in the period between epidemic outbreaks is worrying. Long-term pandemic prevention, preparedness and health systems strengthening is needed in order to increase the security of people, societies and markets. However, governments, international organizations and global players mostly tend to neglect the underlying causes of epidemic risks and the unequal burden both caused and deepened by outbreaks. In fact, social movements in many places play a stronger role in sensitizing the public and fighting for health rights and entitlements than the state, although the latter is ultimately responsible for enforcing the right to health, including during epidemic crises [ 69 ].

It would be too simplistic to blame only biomedical researchers and their political advocates for a one-sided approach to the pandemic. The long neglect of the social determination of the impact of the COVID-19 pandemic is also attributable to the absence of a nuanced voice from the public and global health community, which tends rather to embrace the crisis frame because it brings the necessary attention and additional funds, and sometimes even adopts martial language itself [ 70 ]. Public health advocates subordinated themselves too long and too willingly to the fear-driven discourse that the media and politics readily reproduced [ 71 , 72 , 73 ]. Contrary to what could be expected vis-à-vis a veritable global health challenge, the pandemic response has only in a limited manner enhanced non-medical, social-science-oriented health research, and rather marginalised or even weakened it [ 7 ]. Simultaneously, due to their sheer financial power, philanthropic foundations such as the Gates foundation have enormous influence on academic and research agendas, health care supply and public policies worldwide [ 74 ]. Their focus on output-based performance measures and innovation further drives the verticalization of biomedical approaches at the expense of integration, interdisciplinary cooperation and wider system approaches [ 75 , 76 ].

In order to develop and implement an appropriate and effective global health policy going beyond the current understanding of health security, much more than biomedicine, epidemiological surveillance, data integration or genetic-engineering is needed. Health security should primarily pursue the goal of all human beings to be protected from social, economic and ecological risks, while fulfilling health capabilities and equity, a concept known as ‘human security’ [ 77 ]. Overly securitised health policies have often prevented truly universal, public national health systems that promote health equity and envisage upstream determinants of health [ 78 ]. Global health security needs more focus on environmental health promotion, decent employment and income conditions for all, and other non-medical determinants of health. Health security policies must address the dubious influence of powerful transnational corporations, such as those involved in toxic waste processing, nuclear waste deposits, and hazardous chemical industries. Likewise, the responsibility of corporate powers on health security is evident in, among others, industrialised food production [ 79 ], as well as exploitative, unacceptable and impoverishing working conditions.

Global health policies must intervene beyond the health sector itself and address real and potential health threats and the socio-economic determination of health, including unpacking and pushing back the strong influence of corporate interests and the power they exert over health, mainly through their growing commodification and control of knowledge through the imposition of intellectual property rights [ 80 ]. Hence, regulating the power of transnational corporations should be a public good and particularly a global health priority as important as fighting epidemic threats [ 81 ]. This requires an intensive political and social struggle that goes beyond the health sector and health policies alone. Individual nation states and national governments are likely to be overwhelmed in addressing the health security challenges created by transnational corporations by regulating and taxing them more heavily. However, this is an urgent task for policy-makers, both to reduce health threats and to expand the financial scope for systemic improvements in health security [ 82 ].

While the necessary global governance structures are difficult to implement and enforce, health-in-all policies are ultimately required in order to integrate and articulate health considerations into policymaking across sectors [ 83 ]. The increasing emphasis on securitizing global health in the sense of combating acute and future health threats will, however, not make a significant contribution, if at all, to the basic conditions of people’s health, but rather tend to deteriorate them [ 84 ]. On the contrary, as Loewenson and colleagues have expressed in response to the securitization of the COVID-19 pandemic: “experiences of comprehensive, equity-focused, participatory public health approaches, which use diverse sources of knowledge, disciplines and capabilities, show the type of public health approach that will be more effective to meet the twenty-first century challenges of pandemics, climate, food and energy crises, growing social inequality, conflict and other threats to health.” [ 50 ].

The recent coronavirus pandemic has demonstrated the overarching and sorely neglected relevance of the political and, in particular, economic and commercial determination of health, and the need for them to be taken more seriously into account in all future investments, including ensuring the availability of global public goods such as vaccines and medicines [ 85 ]. Health security policies must ultimately focus on protecting the people of this world from the consequences of global economic inequalities as largely determined by neoliberal doctrine. Governments around the world have outdone each other by launching huge investment programmes at unprecedented levels in order to mitigate the immediate economic consequences of the COVID-19 outbreak [ 86 , 87 ]. Likewise, the World Bank committed over 200 billion US dollars to public and private sector clients between April 2020 and March 2021 to overcome the economic and financial sequela of the pandemic [ 88 ]. During such a state of epidemic emergency, governments need to exercise the economic power vested in the state to address societal unrest and instability. As a response to several conflicts, food and economic crises, over 140 countries around the globe will impose new austerity measures on public expenditure in the upcoming post-pandemic years [ 89 ].

Such an imposition of executive power can provide fertile grounds for human-rights violations and may even facilitate further transformation from democratic-liberal to more authoritarian regimes [ 90 ]. History has taught us that emergency measures are often abused and maintained permanently. A growing number of governments has started to require citizens to install smartphone apps, allowing officials to track individuals and determine whether they can leave their homes. Without proper and legitimate governance this can lead to a form of surveillance capitalism [ 91 ].

De Waal suggests that we not merely have a pandemic crisis, but that we have a crisis in our way of life. He recommends to use the word ‘pandemy’ instead, as this better reclaims the concept of a holistic, socio-political, health and ecological pathology. As such, a response to address a ‘pandemy’ would need to integrate a comprehensive ‘One Health’ approach to identifying the root causes of disease with the ´People’s Science’ practice of responding to them [ 61 ].

The fact that in recent years the global context of health has increasingly come to the fore in foreign policy is encouraging, as long as it is not reduced to epidemiological preparedness for preventing the cross-border spread of infectious diseases, particularly to high-income countries. Biomedical and technocratic reductionism leads to selective access to health care, and privatization increases rather than reduces health inequalities [ 50 , 54 ]. Global health security policies have to take into account the complexity of health in its plurality and diversity; it can only be effective when it is recognised as a cross-cutting issue in all policy areas. Global health security must extend the concept of health threats beyond acute infectious diseases and ultimately apply to conditions and factors that have the potential to threaten people’s health. Health security must invariably envisage environmental, social, political, military, and commercial determinants [ 92 ] that put population health and equity under pressure and threaten people’s health and well-being, not only when a viral epidemic or pandemic arises. Thereby, health security must not disregard the structural causes of both communicable and non-communicable global health threats, inequities and impoverishment of many on this planet, namely the persistence of coloniality and its imperial mindset and practices [ 93 ] and a neoliberal capitalist economic order oriented towards short-term profit maximization and the ecological exploitation of natural resources in particular. Responsible global health security policy must address the underlying structures of existing problems and should not limit itself to merely sustaining the conditions that have led to the global and planetary health crisis to begin with.

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Abbreviations

Coronavirus disease 2019

Group of 20

Non-communicable disease

Severe acute respiratory syndrome coronavirus 2

United Nations

World Health Organization

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  • Published: 06 December 2018

Exploring the ethics of global health research priority-setting

  • Bridget Pratt   ORCID: orcid.org/0000-0002-4934-3560 1 ,
  • Mark Sheehan 2 ,
  • Nicola Barsdorf 3 &
  • Adnan A. Hyder 4  

BMC Medical Ethics volume  19 , Article number:  94 ( 2018 ) Cite this article

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Thus far, little work in bioethics has specifically focused on global health research priority-setting. Yet features of global health research priority-setting raise ethical considerations and concerns related to health justice. For example, such processes are often exclusively disease-driven, meaning they rely heavily on burden of disease considerations. They, therefore, tend to undervalue non-biomedical research topics, which have been identified as essential to helping reduce health disparities. In recognition of these ethical concerns and the limited scholarship and dialogue addressing them, we convened an international workshop in September 2015. The workshop aimed to initiate discussion on the appropriate relationship between global and national levels of health research priority-setting and to begin exploring what might be ethically required for priority-setting at each of those levels.

This paper comprises our reflections following the workshop. Its main objective is to launch a research agenda for the ethics of global health research priority-setting. We identify three domains of global health research priority-setting—scope, underlying values and substantive requirements, and procedural considerations. For each domain, specific research questions are highlighted and why they need to be explored is explained. Some preliminary thoughts and normative arguments as to how the research questions might be answered are also offered. For example, we provide initial ideas about the appropriate relationship between different priority-setting levels and what values and substantive considerations should guide or underpin global health research priority-setting as a matter of justice.

We anticipate that framing a new research agenda for the ethics of global health research priority-setting will spur ethicists, researchers, and policymakers to refocus their efforts on developing more rigorous and ethically sound approaches to priority-setting.

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Research ethics has traditionally focused on issues that arise within the researcher-participant relationship such as ensuring informed consent, a favourable risk-benefit ratio, and fair subject selection. In recognition of the growing global context of research and lack of benefits accruing to vulnerable populations, particularly in low and middle-income countries (LMICs), Benatar and Singer ([ 5 ], p. 826) argued “a new, proactive research ethics... must ultimately be concerned with reducing inequities in global health and achieving justice in health research and healthcare.” This call to expand the scope of research ethics has been reiterated by others [ 19 , 22 , 34 ]. It is also consistent with calls to expand the more general bioethics agenda to focus on population health and health disparities between and within countries [ 12 , 23 ].

When the scope of research ethics encompasses efforts to promote health justice domestically and globally, the targets of ethical analysis expand to include health research priority-setting and resource allocation, research translation, and research capacity strengthening [ 6 , 34 ]. In this paper, we focus on the first of those targets— priority-setting in research , particularly in relation to global health research. We define global health research as research addressing health problems worldwide, including those of the most disadvantaged, who live primarily (but not exclusively) in LMICs [ 24 , 31 ].

Decisions about what global health research is prioritised matter to the achievement of health justice. While largely setting aside ongoing debates about the scope and meaning of health justice, as they are not the focus of our paper, we adopt a middle-ground position: to achieve health justice is to bring individuals worldwide up to at least a decent level of health, with some priority going to those who are worst-off or disadvantaged. Footnote 1 Achieving health justice requires the provision of public health and healthcare goods and services, establishing institutional structures for health, and having broader social arrangements (political, legal, economic, and cultural) that are organized to promote and sustain individuals’ health [ 13 , 39 , 44 ].

Yet whether individuals worldwide, including the vulnerable and disadvantaged, receive preventative care and treatment for their illnesses in part depends on what public health interventions and what medicines have been developed and whether health systems can deliver them efficiently and affordably. This, in turn, depends on what global health research has been prioritised and performed. Where global health research does not focus on particular health conditions (e.g. neglected tropical diseases), effective public health interventions and medicines will not be developed for them. Where global health research does not generate new knowledge on strategies for those interventions and medicines’ delivery and financing, health systems will not be optimised to promote population health and to reduce health disparities. As a result, some individuals, especially in LMICs, will be more likely to get preventable illnesses and to lack access to effective treatments for them.

Despite significant scholarship on research ethics and the ethics of healthcare resource allocation, limited work in bioethics has specifically focused on health research priority-setting. That existing work has largely concentrated on the lack of resources allocated to research on health problems primarily experienced in LMICs. In 1990, the Commission on Health Research for Development’s landmark report, Health research: Essential link to equity in development estimated that only 5% of the world’s resources for health research were being applied to the health problems of LMICs, where 93% of the world’s preventable deaths occurred [ 10 ]. The disparity subsequently became known as the 10/90 gap and there has been much consideration about how it should be addressed by philosophers, bioethicists, policymakers, and organisations such as the Council on Health Research for Development and the World Health Organization [ 28 , 32 , 46 ]. There continues to be significant effort globally, often led from the global south, to push for decision-making for research to move to LMICs and to support capacity strengthening initiatives aimed at promoting that shift.

Beyond the still relevant 10/90 gap, we draw attention to three aspects of global health research priority-setting that raise ethical considerations and concerns connected to health justice. First, priority-setting occurs at different levels, with global priorities often influencing and possibly determining national priorities for health research in LMICs. It has been argued that states—rather than global actors—should be primarily responsible for ensuring their population’s health and, in effect, setting their national research priorities [ 35 ]. The complex and varied nature of health systems between countries means local stakeholders are often better situated to identify national research priorities that advance population health and/or contribute to the reduction of health disparities in their countries [ 7 ]. This raises a key ethical question: what should the appropriate relationship between different levels of research priority-setting comprise? Should national priorities, for example, direct global priorities or vice versa? A lack of ethical debate and guidance exists on this topic.

Second, there is also a lack of discussion and consensus in the bioethics literature on what values ought to be reflected and what associated substantive requirements ought to be used in global health research priority-setting. Nuyens ([ 29 ], p. 320) affirms that health research priority-setting is a “value-driven and political activity” and should, in particular, be driven by the aim of advancing health equity. This is consistent with our position that global health research priority-setting has an essential role to play in promoting health justice and with recommendations made at global ministerial summits that health research should help reduce health disparities between and within countries [ 26 ]. However, no specific substantive requirements for equity-oriented health research priority-setting have been described to guide policymakers [ 36 ]. There are also other values and substantive requirements related to them that should be included in deliberations about global health research priority-setting. What they are and how they should be reflected/implemented in priority-setting processes requires further investigation.

Third, also of ethical concern are the processes through which global health research priorities are set. At the global level, such processes have tended to be top-down, reliant on a limited consultative process, and unable to consider fine-grained local issues [ 2 ]. It has been suggested that global health justice demands a system of shared health governance, under which global priorities reflect the true consensus of global, national, and sub-national actors [ 35 ]. Additionally, global health research priority-setting processes are often exclusively disease-driven, meaning they rely heavily on burden of disease considerations. Such processes tend to undervalue non-biomedical research, resulting in the identification of fewer health systems research priorities and more basic science and clinical research priorities [ 37 ]. This is concerning from a health justice perspective because implementation research, health systems research, and research on broader social determinants of health are required to address the health needs of individuals worldwide, particularly the vulnerable and disadvantaged [ 4 , 47 , 48 ]. Another key question to explore is then: what is required for fair and just global health research priority-setting processes?

In recognition of these ethical concerns and the limited scholarship and dialogue addressing them, we convened an international workshop of health researchers, research managers, philosophers, lawyers, bioethicists and ethics review committee members in September 2015. The workshop aimed to initiate discussion on the relationship between global and national levels of priority-setting and to start thinking about what might be ethically required for global health research priority-setting at each of these levels. The workshop aims were then primarily exploratory. Given the lack of thinking and work on the ethics of global health research priority-setting, the intent was to articulate and discuss initial ideas on the two topics. No attempt was made to generate a consensus position based on the workshop discussions. Workshop speakers and participants spanned five continents and twelve countries: Botswana, Uganda, India, South Africa, Ghana, Australia, Canada, Pakistan, UK, USA, Zimbabwe and Zambia. The structure of the workshop was a mix of formal presentations and extensive group interactions; their content informed this paper. We indicate throughout the paper where particular ideas came from workshop speakers or participants and where broad (though generally not overall) support amongst workshop attendees existed for certain ideas. However, we emphasise that the paper is not a product of the workshop but rather a set of reflections arising out of it. It describes our thinking on global health research priority-setting in light of the workshop’s presentation and discussion content.

The main aim of the paper is to launch a research agenda for the ethics of global health research priority-setting. We identify three domains of research priority-setting—scope, underlying values and substantive requirements, and procedural considerations. For each domain, we highlight specific research questions and explain why they need to be explored. We also offer some preliminary thoughts and normative arguments on how the research questions might be answered. For example, we provide initial ideas about the appropriate relationship between different priority-setting levels and what values and substantive considerations should guide or underpin global health research priority-setting as a matter of justice.

The paper comprises an initial attempt to outline and broadly structure future research directions. As an agenda setting paper, it seeks to lay out broad claims about the terrain rather than set policy (which would clearly require wider input and consensus). Ultimately, our intent is to contribute to a “new proactive” research ethics agenda by drawing attention to domains where future bioethics research on priority-setting is needed and by providing preliminary ideas in relation to these areas. It is hoped that our initial attempt to define these issues will be met with critical attention and spur future investigations by ethicists, researchers, and policymakers.

In any discussion about the ethics of global health research priority-setting, the scope of the priorities to be set must first be clarified. Three dimensions can be identified along which the scope of priority-setting decisions might vary: the geographic region or entity to which the decisions apply, their macro or micro level focus (categories of research versus specific research questions), and the sources of research funding to which resultant priorities will apply. Any particular priority-setting exercise may be resolved into these dimensions.

The first dimension might be understood to capture the level at which priority-setting is undertaken. Workshop participants repeatedly emphasised that global health research priority-setting can occur at multiple, distinct levels that encompass global and national levels but also include funder, consortia, and institutional levels. At the national level, priorities are generally set for the health research that is supported within a particular country. It entails LMICs and high-income countries alike setting their own domestic health research priorities as well as high-income countries including health problems primarily experienced in LMICs in their priorities. Depending on the structures and health concerns within a given country, this priority-setting might stipulate fine-grained or broad brush research priorities. At the global level, research priorities are set that apply across countries worldwide and/or across regions and there is potential for many more actors to be involved in the decision-making process. The global health landscape has expanded tremendously over the past two decades, with many new actors emerging such as global health organisations (e.g. GAVI, Global Fund), philanthropic foundations (e.g. Gates Foundation), and product development partnerships (e.g. Drugs for Neglected Tropical Diseases) [ 31 ]. These priorities are, therefore, likely to be broad ranging and, in principle, based on global or regional trends and needs. Global health research consortia (alliances of universities, research institutions, and other organisations) often set priorities that are meant to guide the research projects undertaken by their member institutions. These priorities are likely to be driven in part by the concerns, interests, and goals of a given consortium and its members. How a particular donor sets priorities for the global health research it funds will only apply to eligible applicants and recipients and is likely to be driven by its broad institutional goals and interests. Finally, research institutions set priorities that apply to their internal funding schemes, which are typically open to their staff.

The second dimension refers to the intended breadth or specificity of the outputs of global health research priority-setting. Depending on whether broad or narrow priorities are sought, priority-setting may involve making macro-level decisions about broad areas of health research or micro-level decisions about specific health research questions. As affirmed in the Council on Health Research for Development’s Manual for Health Research Priority-setting , there must be follow-up action after identifying broad priority areas, which includes translating them into specific research questions [ 30 ]. For example, a ‘macro’ level decision could be: should HIV prevention research be prioritised over research on family violence prevention? A ‘micro’ level decision related to the priority area of HIV prevention research might then be: should a research question about the efficacy of a new PrEP regimen be ranked higher than a research question about the effectiveness of an intervention targeting the structural causes of HIV? Setting priority areas of health research seems to potentially be the remit of global, national, and donors’ priority-setting processes, whereas deciding upon specific research questions under those areas might be more applicable to consortia and research institutions.

Beyond identifying research priority areas and questions, priority-setting also encompasses applying those priorities (i.e. resource allocation decisions). A ‘macro’ level decision could be: should we create a grant program for biomedical research on neglected tropical diseases or a grant program for social determinants research on non-communicable diseases? A ‘micro’ level decision (within a grant program) could be: should a trial testing the effectiveness of a HIV vaccine candidate be funded over a trial testing the effectiveness of a specific sexual health education service? Applying priorities seems to be the remit of donors and research institutions, as they are the bodies that primarily oversee and implement grants programs.

The third dimension acknowledges that global health research is typically funded by multiple sectors (public, private for-profit, philanthropic) with distinct aims and accountabilities. At the national (and perhaps global level), a decision might be made (as part of the priority-setting process) about which research priorities should attract public sector funding and which should be left to the market or to philanthropies. Perhaps public funding should be used to support global health research on issues that market forces or charities do not. It might be that a particularly strong charity presence means that public funds should be redirected elsewhere. Alternatively, it might be important to manage or shape the incentives for private for-profit funders and/or philanthropic funders by designating priorities for them to address. Legal or regulatory instruments might be used in ways that can shape these decisions. The European orphan drug legislation is an example of this kind of incentive management. It provides commercial protection by allowing companies to hold patents for an extended period of time, which is intended to make investing in orphan drugs more commercially appealing to the private for-profit sector.

Given these dimensions, there is a pressing need for academic ethics research to investigate what relationship should exist between priority-setting at not only global and national levels but also funder, consortia, and institutional levels. As a starting point, workshop speakers proposed a bottom-up approach to global health research priority-setting may be ethically appropriate in a range of contexts as opposed to the top-down approaches often employed. This concept was supported by many (but not all) workshop participants. Bottom-up meant an approach where institutional priorities (informed by an “evidence of need” Footnote 2 generated through community engagement) direct national priorities, which, in turn, direct global priorities. A normative basis for this claim might be found in accounts of health and social justice, using concepts of shared health governance and cognitive justice. Shared health governance calls for shared decision-making with meaningful participation of a wide range of health-related stakeholders, rather than top-down and hierarchical decision-making [ 39 ]. Knowledge democracy and cognitive justice recognise the right of different systems of knowledge to exist as part of dialogue and debate [ 43 , 45 ]. They draw attention to inequalities in the knowledge that is valued and produced in today’s world (e.g. “Northern” epistemologies over “Southern” epistemologies Footnote 3 and expert knowledge over local and indigenous ways of knowing) and call for such inequalities to be rectified [ 20 ].

Even so, significant questions remain about whether and when a bottom-up approach is ethically preferable to a top-down approach. Arguably funders’ research agendas might be usefully informed by national priorities and locally-driven institutional priorities. The range and complexity of these decisions might mean that alternative approaches are appropriate instead. The context-sensitive ethical justification for bottom-up or other approaches to connecting the different levels of priority-setting in global health research should be explored further. Additionally, global health research priority-setting processes of varying scope (i.e. differing across the three dimensions) will generate both overlapping and distinct ethical considerations relative to one another. Conceptual and empirical work is needed to determine what ethical considerations arise and how they should be addressed given the scope of research priority-setting undertaken.

Values and substantive considerations

A key overarching ethical question is what values and substantive requirements should guide or underpin global health research priority-setting. As noted by Nuyens ([ 29 ], p. 320-1) “setting priorities means making choices, and those choices must refer to defined underlying values.” Health justice has been identified as one such guiding value for health research priority-setting in the literature [ 29 , 36 ]. To ensure such processes generate outputs that advance health justice, it is important to identify substantive ethical criteria to guide them. But what substantive criteria should be applied at the different levels? Several criteria, which may be necessary to apply in global health research priority-setting, were suggested by workshop participants: need, magnitude of benefits, equity, the needs of vulnerable and disadvantaged groups, cost-effectiveness of research, cost-effectiveness of proposed interventions, and likelihood of research success.

In global health research priority-setting, the temptation is to think that research targeting conditions with the highest health burden should be prioritised as a matter of justice. Instead, workshop participants recognised that the decision is much more complex than that and identified, need , rather than burden of disease, as a possible criterion for global health research priority-setting. The two concepts are not identical; burden of disease considerations alone are insufficient to establish that research addresses a health need. What comprises a health need depends in part on the concept of health and the causal explanation of what determines health being used. Footnote 4 Important conceptual and empirical research questions thus remain about what constitutes a health need and how we should understand the relationship between the health needs of individuals, the health needs of groups or larger populations, and the burden of disease. Another topic to investigate is how to prioritise research that addresses different health needs such as longer length of life versus better quality of life, severe diseases versus prevalent diseases, or child health versus ageing. How these particular health needs ought to be balanced and traded against each other will vary according to different accounts of health and social justice. For example, Powers and Faden’s theory of social justice emphasises protecting health early in the life course [ 33 ]. It would support using criteria or weighting criteria in ways that favour research priorities focused on children’s health needs.

The magnitude of the benefits (if the research hypothesis is successfully proven), equity , and the needs of vulnerable and disadvantaged groups (as distinct from needs generally) were also proposed as potential substantive criteria by workshop participants. The former criterion entails considering the size and type of expected benefits of the research for the host population. The latter two criteria encompass assessing whether the research has potential to generate evidence that will help reduce unjust health disparities and whether the research has potential to address vulnerable and disadvantaged groups’ most pressing health needs. Tensions will likely arise between, for example, consideration of magnitude of benefits and equity, and how to navigate them needs to be investigated.

The cost-effectiveness of research and the cost-effectiveness of proposed interventions are additional potentially relevant criteria. The former comprises considering is the research itself a good use of resources and the latter means considering is the intervention good value for money (compared to existing interventions). As part of further specifying these criteria, how cost-effectiveness should be defined will be important to explore. Questions remain about what constitutes cost-effectiveness in global health research contexts. The assumptions and analytical tools used in cost-effectiveness analysis reflect certain values and setting-specific valuations, and they can violate ethical principles like equity [ 40 ]. It is also noted that trade-offs between the two cost-effectiveness considerations might occur during micro-level application of priorities. For example, should a donor support research proposal 1—a large clinical trial with a moderate chance of success that, if successful, will produce intervention A, which will be affordable and effective on a large scale. Or should the donor invest in research proposal 2—a series of comparatively inexpensive, small-scale studies that are likely to succeed and will produce intervention B, which is expensive and treats a relatively rare, localised health problem.

The likelihood of the research being successful may be another pertinent criterion and would encompass consideration of, for example, the background evidence supporting the research, its novelty, and the time it will take to yield results. Yet workshop participants noted a tension exists between prioritising research with high versus lower degrees of uncertainty in outcomes (e.g. basic science to support drug discovery versus health systems research testing the efficacy of a proven delivery model in a new location) since research with a high degree of uncertainty might bear fruit in the long-term. Recognition of the potential for this criterion to bias priority-setting against basic science research might be appropriately reflected in its weighting relative to other criteria.

Further bioethics scholarship is needed to determine the ways in which the proposed criteria are best specified to promote health justice and how their specification may vary between priority-setting at different levels. It should also explore what weights might be assigned to the various criteria. Scholars have argued that the goal of health research priority-setting is to define a portfolio that has the greatest impact on the health of the worst-off or disadvantaged [ 4 , 36 ]. There was strong support for this view at the workshop, where it was suggested that helping improve the health of the worst-off in a country, region, or even globally ought to be an over-riding ethical value for setting research priorities. This would entail weighting substantive criteria related to equity more heavily in health research priority-setting than those related to utility and cost-effectiveness. Certain types of research questions have been identified as more likely to benefit people who are disadvantaged: 1) research questions to develop more affordable, less technology-dependent versions of existing medical products; 2) implementation research questions to ensure effective interventions are integrated into health systems; and 3) health systems research questions more broadly [ 4 ]. Assigning an equity criterion a high weight would likely favour identifying such research questions as priorities.

Finally, bioethics scholarship is needed to determine what other values should also or alternatively be pursued through global health research priority-setting and what upholding those additional values entails (in terms of substantive criteria) at the different levels of priority-setting. It is important to observe that health research priority-setting decisions across levels may well involve differing sets of values and so the set of relevant criteria to be considered at each level may vary. Exploring the trade-offs between different values and their associated criteria will also be critical.

Procedural considerations

Theories of justice generally call for using deliberative processes and norms to achieve fair or just priority-setting [ 18 , 49 ]. Drawing on these theories, the well-known ‘Accountability for Reasonableness’ (A4R) framework was developed as a guide for achieving fair priority-setting processes [ 13 , 14 ]. The rationale was that, in the absence of consensus about how specific values should guide priority-setting decisions, it is essential to put in place procedures that will ensure the fairness and legitimacy of those decisions [ 42 ].

With the A4R approach in mind, three procedural considerations that can promote fairness and justice are identified that apply to each level (global, national, funder, consortia, institutional) of priority-setting:

What is the right process for making decisions about global health research priorities?

Who should initiate and lead global health research priority-setting, who should participate in global health research priority-setting and how should they participate.

Specific sub-questions for exploration are highlighted below within each of these broader areas. Some of these sub-questions may apply to all levels of priority-setting whereas others may only be relevant to a particular level(s).

Workshop participants affirmed, at a minimum, the right process should be a fair process; procedural requirements for a fair health research priority-setting process then need to be identified. This may demand requirements corresponding to norms of deliberative decision-making such as transparency, reciprocity, non-coercion, qualitative equality, and accountability amongst others [ 18 , 21 ]. It is possible that A4R requirements (relevance, publicity, appeals/revision, and enforcement) might be adapted for global health research priority-setting as part of future conceptual work. However, it will be important to take account of existing criticisms and limitations of using the A4R approach when doing so. For example, Gibson, Martin, and Singer [ 15 ] have proposed that, beyond A4R, a requirement for promoting qualitative equality is also vital to ensuring fairness in decision-making in contexts of power disparities. Upholding such a requirement entails, first, identifying where power differences exist between participants in a given decision-making process and, second, developing and implementing strategies to minimise those power differences.

Sub-questions for exploration then include: (i) what deliberative norms should apply in global health research priority-setting and how should procedural requirements reflecting them be specified? (ii) are additional procedural requirements ethically required to achieve fairness and justice? A local ownership requirement may be needed and could perhaps be reflected in how the next two procedural considerations under discussion are specified. A requirement for using “interpretive” priority-setting methods rather than technical, disease-driven methods may apply where global health research priority-setting encompasses selecting both biomedical and non-biomedical research priorities or only non-biomedical research priorities. As previously noted, the use of “interpretive” priority-setting methods may be essential as a matter of health justice because types of non-biomedical research are needed to improve the health of the most disadvantaged. Requirements for the way in which a global health research priority-setting process is set up and justified (and by whom) may also be important because they can help establish the ethical legitimacy of the resultant priorities.

Workshop participants identified leadership of priority-setting processes and determining who should ideally initiate such processes as an important ethical consideration. The actors or institutions who assume or are given the responsibility to undertake a global health research priority-setting exercise gain considerable power, as they make a number of decisions that shape how the priority-setting process is conducted. For instance, they determine who is included in the process and whether it is structured in a way that promotes different stakeholders having an equal opportunity to participate. They may even have control over the substantive criteria used to set research priorities.

A workshop speaker noted that empirical evidence shows nearly half of health research priority-setting processes in LMICs are initiated by international organisations, with only a third initiated by LMIC governments and an even lower proportion (15%) commenced by LMIC researchers [ 25 ]. Where national or institutional research priority-setting is not led by in-country actors, it generates ethical concern that there is a lack of local ownership of the process. This reflects concern over whose priorities are ultimately reflected in the outputs of priority-setting—namely, local or external actors—based on who “owns” the process. Given that approaches like A4R rest on the idea that justice requires all parties to have (and be seen to have) an equal opportunity in deliberations, the potential for these kinds of biases are ethically significant.

Sub-questions for exploration then might include for example: (i) which actors, donors, or institutions should lead or control global health research priority-setting processes at the different levels? (ii) what is the role of the international scientific community in priority-setting processes? At the national level, priority-setting could be led by the ministry of health, the national research council, or particular prominent research institutions. According to workshop participants, the appropriate actor to initiate priority-setting may be national health research councils because they are responsible for overseeing research in many countries. Yet this may be difficult to implement in practice since some countries do not have bodies that coordinate health research and others have more than one. Moreover, government support and public trust in such bodies may be quite limited. In such cases, who should lead national research priority-setting? At the global level, it is even less clear which type of actor(s) and/or institution(s) should be in charge of leading and initiating global health research priority-setting.

Relevant ethical considerations about participation in global health research priority-setting that apply at each level are: who should be involved and how should they be involved. Workshop attendees suggested participants could potentially include national and sub-national stakeholders spanning the weak and powerful, the organised and unorganised, research experts, policymakers, healthcare providers, citizens, and independents (i.e. those who are not stakeholders per se but can ensure that the process functions fairly). An account of deep inclusion in health research priority-setting argues that involving research-producers, research-users, and research-beneficiaries is necessary but not sufficient. Achieving deep inclusion means ensuring that participants also span a wide spectrum of relevant roles and demographics within those three categories [ 36 ]. That account and the A4R framework further emphasise that disadvantaged and vulnerable groups must participate in health-related priority-setting as a matter of fairness and justice [ 17 , 36 ]. How to ensure the involvement of the disadvantaged and less powerful was raised as a key concern by workshop participants.

A key sub-question in this context might then be: What is required to achieve fully inclusive global health research priority-setting at the different levels? A comprehensive account would speak to what types of actors must participate and across what demographics, what mode of participation should be afforded to different actors, what phases of the priority-setting process they should participate in, and how the disadvantaged and vulnerable should participate. A variety of modes of participation exist, with some more “active, deliberative, and influential” than others ([ 11 ], p. xxvii). Sherry Arnstein and others distinguish between lay control, partnership, and consultation [ 1 , 8 , 27 , 38 ]. Lay control means citizens are solely responsible for decision-making with (at most) consultative input from experts. Collaboration or partnership involves shared decision-making between experts and citizens [ 38 ]. Consultation is characterised by citizens being invited to give their input but having no assurance that it will be used by those who decide [ 1 ]. It may entail all or some of the following: proposal-sharing, information-giving, and/or providing feedback Footnote 5 [ 9 ]. A number of phases in “interpretive” health research priority-setting have also been identified: planning the priority-setting process, identifying research topics and ranking criteria, and setting health research priorities. It has been argued that earlier entry into the process is associated with deeper inclusion [ 36 ].

Other related sub-questions to explore include: (ii) what role should LMIC actors play in priority-setting at the global level? (iii) should external actors be allowed to participate in national and institutional health research priority-setting? Currently, LMIC actors (e.g. general public, researchers, policymakers) typically play a limited part in setting what are meant to be global priorities [ 29 ]. Their taking on a bigger role may be warranted as a matter of fairness and justice. External donors often exert undue influence on national and institutional health research priority-setting in LMICs because they provide the majority of research funding in LMICs [ 16 ]. As an example, during the course of one year, a Faculty within a South African research institution received a total of $232,000 USD in funding from within its country compared to $10,786,000 USD from the United States’ National Institutes of Health. When the relative proportions of health research funding from outside and within the country are compared, it demonstrates the extent to which international funding and the priorities set by external donors can influence what research is prioritised and pursued locally. A primary role for LMIC actors may instead be generally warranted in their national and institutional research priority-setting as a matter of justice. Accounts from political philosophy like shared health governance would support such an approach [ 35 ].

Even if a country-based approach is warranted, it is also necessary to consider under what circumstances the “autonomy” of sub-national and national stakeholders can permissibly be “influenced” by the involvement of external actors in national or institutional priority-setting. Workshop participants suggested that the participation of external actors may be ethically permissible in some contexts such as where countries have corrupt governments or where certain requirements for the legitimacy of the priority-setting process are not met. What those “legitimacy” requirements are and who determines if they have been met are additional questions for exploration.

A final set of sub-questions relates to the involvement of communities: (iv) what is the nature and purpose of community engagement in global health research priority-setting? (v) is community engagement necessary at each level of priority-setting? Community engagement using various mechanisms and with different understandings of “community” can, where appropriate, be built into, be prior to, or sit alongside global health research priority-setting processes. Workshop speakers affirmed the potential for community engagement to play a specific and key role in global health research priority-setting—namely, capturing an “evidence of need” to inform the process. For example, they proposed community engagement could inform national priority-setting via institutional priority-setting; different research institutions could be responsible for engaging with their surrounding communities, including the disadvantaged within them, and incorporating their “evidence of need” into institutional research priorities. Accessing the voices of more disadvantaged community members would be important to making their health needs visible in research priorities. This more local or ground-level evidence could then more thoroughly inform decisions about national and global priorities. Where robust community engagement has occurred at the institutional level and its outputs are used to inform higher level priority-setting, it may then not be necessary as part of national or global processes.

Conclusions

The ethical issues involved in setting global health research priorities are complex and under-researched. In this paper, we identify and frame a research agenda for these complex ethical issues so that they can be studied further (Table  1 ). Three sets of ethics questions emerge. First, there are pressing ethical issues about the interaction and relationship between the various scope distinctions within global health research priority-setting. Under what circumstances and in what way should institutional or national research priorities influence, or be influenced by, global priorities? Workshop participants proposed a case could be made for bottom-up approaches in some contexts. This idea received support from many (but not all) workshop attendees.

The second set of ethics issues involves being clear about the values and associated substantive requirements that are at stake in global health research priority-setting. What is the range of values and relevant substantive criteria that should be taken into account when prioritising global health research at each of the levels? What is the best way to specify the various substantive criteria? There was strong support at the workshop for the view that helping improve the health of the worst-off in a country, region, or even globally ought to be an over-riding ethical value for setting global health research priorities.

The third set of ethics questions concerns the nature of the processes that should be used to ensure fair and just decision-making about research priorities at each level. What is the right process for making decisions about global health research priorities? Who should initiate and lead global health research priority-setting? Who should participate in global health research priority-setting and how should they participate?

We take these three areas of investigation to set an important agenda for academic ethics research. Both normative and empirical ethics methods can usefully be employed to explore them. We emphasise the need for more work, debates, and discussions amongst researchers, ethicists, and policymakers in all three areas and hope this call to action will stimulate an active global discourse on the ethics of global health research priority-setting. We further note that, while this paper has focused on global health research, our arguments and research agenda may be relevant to research priority-setting more generally.

A point of convergence among multiple theories of social justice is that it is a priority and duty of justice to avert and alleviate disadvantage [ 3 ].

This term was used by workshop speaker Professor James V. Lavery (Emory University) in his presentation.

Here, “the global South is not a geographical concept, even though the great majority of its populations live in countries of the Southern hemisphere. The South is rather a metaphor for the human suffering caused by capitalism and colonialism on the global level… It is a South that also exists in the geographic North (Europe and North America), in the form of excluded, silenced and marginalised populations, such as undocumented immigrants, the unemployed, ethnic or religious minorities, and victims of sexism, homophobia, racism and islamophobia” ([ 41 ], p. 18–19).

Depending on what concept of health is used, needs may be understood to comprise deficits in physical and mental well-being (from an optimal or decent level) or they may be defined more broadly. Venkatapuram’s account of health justice, for instance, defines health as individuals’ ability to achieve ten central human capabilities: life; bodily health; bodily integrity; senses, imagination, and thought; emotions; practical reason; affiliation; other species; play; and political and material control over one’s environment [ 44 ]. Causal models of health identify different bases of individuals’ ability to be healthy: biological, agency, physical, and/or social. Depending on what causal bases are recognised as pertinent, needs may be defined as what is required to generate improvements in: individuals’ biological capacity to achieve health, individuals’ ability to act as agents of their own health and achieve health goals they value, enabling physical environmental conditions, and/or social and material structures that promote health.

In proposal-sharing, citizens provide their recommendations or suggestions for what they would decide if they had the power to make certain decisions. They offer their “demands” for new research priorities, topics, or questions to be investigated by those with decision-making power [ 9 ]. In information-giving, citizens provide information on topics that have been selected by those who created the decision-making space and/or by themselves. Their information may or may not be used. Finally, providing feedback means that citizens share their opinions on the outputs or other aspects of a decision-making process. They give judgements about the relevance of research priorities set by others [ 9 ].

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Acknowledgements

The authors would like to acknowledge the other speakers and participants at the “Ethics of health research priority-setting” workshop, which was held after the Oxford Global Health and Bioethics International Conference in 2015: Angus Dawson, Jim Lavery, Barbara Sina, Anant Bhan, Poloko Kebaabetswe, Kausar S. Khan, Chris Muna, Paul Ndebele, Paulina Tindana, Gerry Bloom, Joseph Ochieng, Maureen Kelley, Michael Parker, Patricia Kingori, Angeliki Kerasidou, and Kristin Voight. The ideas and valuable insights shared at the workshop informed this paper.

The “Ethics of health research priority-setting” workshop was funded by the Ethox Centre at the University of Oxford through a Wellcome Trust grant (200125/Z/15/Z). Mark Sheehan is funded by the National Institute for Health Research (NIHR) Oxford Biomedical Research Centre, grant BRC-1215-20008 to the Oxford University Hospitals NHS Foundation Trust and the University of Oxford. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. AAH is grateful for the support of the Future Health Systems Consortium. These funding bodies had no role in the design of the paper, in the analyses described in it, or in writing the manuscript.

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BP, MS, NB and AAH conceived of the paper: its topic, aims, and arguments. All authors contributed to the analysis presented in the paper. BP was responsible for writing the first draft of the paper. All authors revised the work critically for important intellectual content, with BP taking the lead role in finalising the revisions. All authors gave final approval of the version to be published.

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The 10 largest public and philanthropic funders of health research in the world: what they fund and how they distribute their funds

  • Roderik F. Viergever 1 &
  • Thom C. C. Hendriks 2  

Health Research Policy and Systems volume  14 , Article number:  12 ( 2016 ) Cite this article

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Little is known about who the main public and philanthropic funders of health research are globally, what they fund and how they decide what gets funded. This study aims to identify the 10 largest public and philanthropic health research funding organizations in the world, to report on what they fund, and on how they distribute their funds.

The world’s key health research funding organizations were identified through a search strategy aimed at identifying different types of funding organizations. Organizations were ranked by their reported total annual health research expenditures. For the 10 largest funding organizations, data were collected on (1) funding amounts allocated towards 20 health areas, and (2) schemes employed for distributing funding (intramural/extramural, project/‘people’/organizational and targeted/untargeted funding). Data collection consisted of a review of reports and websites and interviews with representatives of funding organizations. Data collection was challenging; data were often not reported or reported using different classification systems.

Overall, 55 key health research funding organizations were identified. The 10 largest funding organizations together funded research for $37.1 billion, constituting 40% of all public and philanthropic health research spending globally. The largest funder was the United States National Institutes of Health ($26.1 billion), followed by the European Commission ($3.7 billion), and the United Kingdom Medical Research Council ($1.3 billion). The largest philanthropic funder was the Wellcome Trust ($909.1 million), the largest funder of health research through official development assistance was USAID ($186.4 million), and the largest multilateral funder was the World Health Organization ($135.0 million). Funding distribution mechanisms and funding patterns varied substantially between the 10 largest funders.

Conclusions

There is a need for increased transparency about who the main funders of health research are globally, what they fund and how they decide on what gets funded, and for improving the evidence base for various funding models. Data on organizations’ funding patterns and funding distribution mechanisms are often not available, and when they are, they are reported using different classification systems. To start increasing transparency in health research funding, we have established www.healthresearchfunders.org that lists health research funding organizations worldwide and their health research expenditures.

Peer Review reports

Approximately 40% of all health research in high-income countries is funded by public and philanthropic funding organizations [ 1 ]. These organizations play a central role in the development of new knowledge and products, particularly in areas that are not sufficiently profitable [ 2 ]. For example, the involvement of public and philanthropic funding organizations has been key in the development of new medical products to combat neglected diseases [ 1 , 2 ] and, since recently, these organizations are increasingly taking action to address the lack of development of new antibiotics [ 3 – 5 ].

Transparency on who the main funding organizations of health research are, on what they fund (their funding patterns) and on how they decide on what gets funded (their priority setting mechanisms and funding distribution mechanisms) can help funding organizations to synchronize their efforts, potentially preventing the duplication of research and improving collaboration on research priorities, and has various other strategic and practical benefits for funders [ 2 , 6 – 12 ]. Such transparency also allows for external evaluation of funding organizations’ portfolios and decision-making processes [ 7 , 13 ]. This is particularly important for public funding organizations, since they distribute public funds. For philanthropic funders, such accountabilities are less clear, but given the substantial impact of some of these funders on the global landscape for health research, it might be reasonable to make similar demands from this group of funders [ 14 , 15 ].

Although substantial insight has been created in recent years into countries’ expenditures on health research [ 1 , 16 – 20 ], there has been relatively little scrutiny of the funding patterns and mechanisms of individual funding organizations. Mappings of individual funding organizations’ expenditures on health research are often limited to one or several countries [ 7 , 10 , 21 – 26 ] or to a select group of diseases [ 25 , 27 – 29 ]. To increase the available information on major public and philanthropic funders of health research, we present a mapping in this article that had a simple target: to identify the 10 largest public and philanthropic funders of health research in the world, to report on what they fund, and on their mechanisms for distributing these funds (funding organizations’ priority setting mechanisms were beyond the scope of this study – see Limitations section for more detail).

Here, we outline the methods used to identify the 10 largest funding organizations of health research in the world, and to assess the funding patterns and funding distribution mechanisms of these organizations. A more detailed description of these methods is provided in Additional file 1 . All data were collected from November 4, 2013, to August 12, 2014.

Identifying the 10 largest funders of health research

Search strategy.

This study distinguished between four types of public and philanthropic health research funders: (1) public national or regional funders (excluding funders of official development assistance (ODA) and multilateral funders), (2) philanthropic funders, (3) ODA funders, and (4) multilateral funders. The mandate of the funding body did not need to be limited to funding health research. Funding organizations were identified through a search strategy that had several components: key funding organizations in the 20 countries with the highest spending on health research [ 1 ] were identified, membership lists of collaborative groups of funders (i.e. groups where major funders of health research collaborate on a global or regional level) were reviewed, publicly available lists of funding organizations that included annual spending on health research were searched, and data on Development Assistance for Health were used to identify key ODA funders. For every funder type, a specific search strategy was used to identify the largest funders of health research (Additional file 1 ). Private for-profit funding organizations were not included in our analysis; we only aimed to map public and philanthropic funders (private for-profit health research funders are mapped elsewhere [ 30 ]). Product development partnerships (PDPs) and other public private partnerships (PPPs) were also excluded because they are intermediate funding organizations, who are funded in turn by governments, philanthropies and the for-profit sector. Furthermore, we excluded single disease funders; although the majority of philanthropic funders of health research focuses on one disease [ 21 ], the largest philanthropic funders of health research tend to fund across multiple disease areas (with some exceptions [ 31 , 32 ]). We note that the annual health research expenditures of the largest PDP, PPP and single-disease funders that we are aware of are lower than the annual expenditures of the 10 largest public and philanthropic funders reported in this study (see Additional file 1 ). Finally, in two cases (the United States Department of Defense (US DoD) and the European Commission (EC)) we included both the overarching organization at its largest sub-organizations or sub-programmes, because of the substantial differences between the funding distribution mechanisms of these sub-organizations and sub-programmes.

To aid future analyses of this kind, we provide an overview of various sources that helped us identify the main public and philanthropic funders of health research globally in Additional file 2 .

Assessing health research expenditures

For all the funding organizations that followed from our search, publicly available data were collected on the organizations’ annual health research expenditures (from annual reports and websites). Data were collected for the most recent year available. When we were not able to find data on organizations’ annual expenditures in the public domain, we contacted funders to ask if they could provide us with their annual expenditures on health research.

Funding organizations differ on at least three aspects in terms of how they report their annual health research expenditures. First, expenditures can be reported as actual expenditures, commitments or budgets. Second, there can be differences in terms of what the expenditures cover. They can cover the organization’s total expenditures on health research excluding operational costs (for managing the funding organization), its total expenditures including operational costs, or its total overall turnover over a single fiscal year (this was only collected if the funding organization exclusively funded health research). Third, there can be differences in terms of the research areas that the reported expenditures pertain to: only health research, or broader categories such as health and biological research or life sciences research. For each funder we extracted data on annual health research expenditures in a step-wise manner, always reporting the actual expenditures excluding operational costs in the area of health research when possible. When these numbers were not available, we reported the next best available number, following the order in the categories provided above. We note that the data from the funding organizations in the top 10 all relate only to health research, all concern actual expenditures or commitments, and for all, except one, operational costs were excluded.

Training support and research education were not included in the overall amount for health research expenditures. In addition, for government ministries, we excluded two types of funding flows. First, when funding was provided by ministries to funding agencies for distribution, we included the funding for the funding agencies, but not for the ministries. Second, for government ministries, such as ministries of education or health, we excluded block funding to universities or hospitals (similar to other initiatives that have reported on health research funding flows [ 24 ]). For funding agencies, we did include institutional funding.

Finally, organizations’ expenditures were made comparable using methods by Young et al. [ 17 , 20 ]. To do so, we first deflated organizations’ expenditures in the national currency to the year 2013 using Gross Domestic Product deflators from the International Monetary Fund World Economic Outlook Database of April 2014 [ 33 ]. Second, we converted the inflation-corrected expenditures to US dollars using the World Bank Official exchange rates for the year 2013. As a secondary outcome, we calculated funding organizations’ health research expenditures as 2013 purchasing power parity-adjusted US dollars (these are not reported in this article, but are available on www.healthresearchfunders.org ) [ 17 , 20 ].

Assessing the funding patterns and funding distribution mechanisms of the 10 largest funders of health research

After the 10 largest funding organizations of health research were identified, data were collected on their funding patterns and funding distribution mechanisms. For each organization, data were collected on:

The funding mechanisms used to distribute funding: intramural funding or extramural funding. For extramural funding, we distinguished between project grants, ‘people grants’, programme grants, funding distributed to organizations and other extramural research funding. For project grants, data were collected to assess if the distribution was untargeted, targeted or highly targeted (for definitions see Additional file 1 ).

The amount of funding allocated to a list of 20 key health areas from the Global Burden of Disease classification [ 34 ].

Funding for operational expenditures was excluded.

Finally, we denoted whether funding organizations used a classification system to classify funding to various health areas and whether they reported statistics on funding for various research types (e.g. biomedical research, clinical research, epidemiological research or health systems research [ 35 ]) and recipient countries or regions.

All data were collected from online reporting databases, annual reports, official websites, or other information sources. After this, each funder was invited to participate in an interview. Before the interview, a document with collected data was made available to a representative of the funder. Before and during the interviews, representatives were asked to add, amend or confirm the data.

Identifying the 10 largest funding organizations of health research

Public and philanthropic funding organizations.

Our search identified 55 public and philanthropic funders that were candidates for being one of the 10 largest funders of health research in the world (Table  1 ), excluding ODA funders and multilaterals (we searched separately for these and report on them later). For 41 organizations, data on the organizations’ annual health research expenditures were available. For five of these organizations, this information was received through personal communications (not publicly reported). Fourteen funders did not provide figures about their annual health research expenditures. Often, these organizations were general funders of research and did provide overall expenditure data but not for health research specifically.

For the 10 largest funders, health research funding totalled to $ 37.1 billion, approximately 40% of all spending on health research globally by public and philanthropic sources [ 1 ]. The United States National Institutes of Health (NIH) contributed the largest part of this amount, with $ 26.1 billion in health research funding in 2013. The largest philanthropic funder was the Wellcome Trust ($ 909.1 million). The Wellcome Trust and the Howard Hughes Medical Institute (HHMI) were the only two philanthropic funders among the 10 largest funders of health research; the other eight organizations were public funding bodies. All 10 funders came from Northern America, Europe or Oceania. The largest Asian funding organization identified was the National Natural Science Foundation of China (NSFC) ($ 621.3 million), the largest funder from Latin America and the Caribbean was Consejo Nacional de Investigaciones Científicas y Técnicas (CONICET) from Argentina ($ 184.4 million), and the largest African funder was the South African Medical Research Council (SA MRC) ($ 63.2 million).

ODA-agencies and multilaterals

The expenditures of ODA-agencies and multilaterals on health research were substantially smaller than the expenditures of the largest public and philanthropic funding organizations (Tables  2 and 3 ). The largest funder of health research through ODA was USAID ($ 186.4 million) and the largest multilateral funder was WHO ($ 135.0 million).

Assessing the funding patterns and funding distribution mechanisms of the 10 largest funding organizations of health research

Funding mechanisms used to distribute funding.

There was considerable diversity in organizations’ funding distribution mechanisms (Table  4 ). Five funders funded research fully extramurally, five allocated at least a proportion of their funding to intramural research institutes, and one funder, the Institut national de la santé et de la recherche médicale (Inserm), funded research (almost) exclusively intramurally (total is 11 because for the EC and the US DoD we analysed the sub-organizations or sub-programmes: the US Congressionally Directed Medical Research Program (CDMRP), the Health theme of the EC FP7 Cooperation programme and the European Research Council (ERC)).

Of the 10 funding organizations that provided extramural funding, for six, the main mechanism for extramural funding distribution was the allocation of funding through untargeted competitive project or investigator grants (often, there were also some smaller programmes that used a more targeted distribution). Two funders, the Health theme of the European Commission FP7 Cooperation programme and the US CDMRP, used a more targeted approach and issued calls under prioritized areas. Funders also made use, in varying degrees, of highly targeted funding schemes, such as research contracts, tenders or prizes, but this was never the dominant form of funding distribution. The last two funders, the United Kingdom Medical Research Council (MRC) and the Deutsche Forschungsgemeinschaft (DFG), used a mixed approach to allocate funding, with substantial contributions made through different funding distribution mechanisms. Lastly, the funding model of the NIH and the untargeted part of the MRC deserve separate mentioning because, although they adhered largely to an untargeted model and research funding was available for all areas of health research, the amounts of funding available for various broad research areas were earmarked (in the case of the NIH, for example, through budgets for the NIH institutes). This differs from targeted approaches, where not all areas have to be funded and the prioritization is often more specific, but it is also not completely untargeted.

Finally, most funders mainly dispensed funding via project grants, with smaller programmes that provide grants to excellent individual researchers. However, others put more focus on individual excellence. The HHMI has traditionally been a proponent of such people-focused funding. Since recently, other funders, such as the Wellcome Trust and the NIH, are increasingly making use of ‘people grants’ as well [ 36 ].

Funding patterns towards diseases

The funding organizations’ research expenditures towards 20 specific health areas are shown in Table  5 . We could report data for at least one health area for seven funders. However, as the table makes clear, these data were often not available.

Funding patterns varied, with some funders showing preferences for investing in non-communicable over communicable diseases and others showing the opposite. For example, the NIH spent less on infectious disease research in total than on cancer research alone, while the Wellcome Trust spent 14 times more on infectious disease research than on cancer research. Similar variations arose when comparing more specific disease areas within the non-communicable or communicable diseases. For example, the NIH spent almost three times more on cancer research than on cardiovascular research while the EC under the FP7 programme spent roughly equal amounts on both, and while HIV/AIDS funding comprised more than half of the infectious disease research funding at the US NIH, it comprised less than 10% of that funding at the Australian National Health and Medical Research Council (NHMRC).

Six funders used classification systems to classify their funding to health areas (Table  6 ); five different classification systems were used by these funders (the two funders from the United Kingdom used the same system). Besides using different categories for health problems, these systems also varied on other aspects, such as who enters the data (e.g. the researcher or a specialist employed by the funder) and whether grants can be indexed as belonging to one or multiple health problems. Seven funders reported amounts of funding allocated to various research types and the same seven reported how much funding was allocated to various recipient countries or regions.

In this article, we have identified the 10 largest funding organizations of health research globally and shed more light on their funding distribution mechanisms and funding patterns. Two main conclusions can be drawn from this mapping of influential funders of health research.

Differences between funding organizations: the need for more evaluation of funding distribution models

First, there is considerable diversity between funding organizations in terms of what they fund and how they distribute those funds. This begs the question: do some funding distribution models have more impact than others? The impact of different approaches to funding health research is regularly discussed in the literature, for example, for intramural versus extramural funding [ 23 ], for targeted versus untargeted funding [ 37 ], for ‘people grants’ versus project grants [ 36 , 38 ], for small grants versus large grants [ 10 ], and for competitive versus non-competitive research funding [ 39 ]. However, comparative evaluations of the impact of various funding models are scarce [ 10 , 23 , 38 ], even though approaches to measure the impact of health research are available [ 40 ]. An exception has been the recent comparisons of ‘people grants’ versus projects grants in the United States, which compared HHMI with NIH researchers and NIH Pioneer Awards with NIH project grants [ 36 , 41 – 43 ]. These comparisons have led the NIH to consider a broad shift toward ‘people grants’, demonstrating the value and potential impact of such evaluations [ 36 ]. Evaluations of this kind provide new insights when comparing funding models across funding organizations, but given the different contexts in which funders operate, comparing the impact of different models within one funding organization is perhaps particularly valuable and should become more common practice.

There is also a need for more debate about where the power to decide priorities for publicly funded health research should lie (with parliaments, ministries, funding agencies, or independent committees of experts). Such debate is needed because there are finite resources for investing in health research and thus priorities need to be set using fair and legitimate methods and using the best possible evidence [ 44 ]. In practice, public sector health research funding decisions are not only made on the basis of what research is needed, but are regularly influenced by other factors, such as political interests, advocacy and lobbying [ 2 ]. Thus, there is a need for transparency on who makes those decisions and to debate who should make them [ 2 , 13 , 45 – 47 ]. Analysis of funding organizations’ priority setting processes was not part of this study (see Limitations) but deserves to be a more frequent subject of research studies in the future.

Improving publicly available data on health research funding

Second, to enable evaluation and debates as noted above, it is necessary to have a map of the health research funding landscape: to know who the main funders of health research are, what they fund, and how they decide what gets funded [ 2 , 6 – 11 , 13 ]. Yet, this study shows that these data are often not available. Through our study, we did not find a list of all public or philanthropic health research funders worldwide that included their annual health research expenditures (Additional file 1 ). Therefore, we have now established such a list ourselves at www.healthresearchfunders.org . On this website, we provide access to the data collected for this article and to information on more than 200 other public and philanthropic funders of health research that we have added to this website since the mapping for this article was completed.

Besides the absence of a global listing of funding organizations, we found that data on organizations’ funding patterns and funding distribution mechanisms are often not available, and when they are, they are difficult to aggregate, owing to differences in funders’ data classification systems. Notably, we only collected these data for the 10 largest funding organizations of health research. The absence of such information, and the difficulties in aggregating the data across funders, are likely to be more prominent when smaller funders are also included. There is currently no consensus on a framework for producing descriptive data on funders’ funding patterns (both in terms of health areas and research types) nor on a framework for describing their funding distribution mechanisms [ 6 , 8 , 37 ]. In this article, we have proposed three frameworks for reporting data on health research funding: for reporting data on funding distribution mechanisms (Table  4 ), for reporting data on funding patterns in terms of health problems (the Global Burden of Disease classification [ 34 ]), and for reporting data on funding patterns in terms of research types (biomedical research, clinical research, epidemiological research or health systems research, as proposed by Frenk [ 35 ]). The adoption of standards for reporting funding data, including guidance on what data classification systems to use, by funding organizations, for example through collaborative initiatives such as the Heads of International Research Organizations, would substantially improve the quality and comparability of reported funding data [ 9 ].

Funding organizations are starting to support the goal of transparency and are increasingly recognizing the problems noted above and addressing them. At the 2014 World Health Summit in Berlin, several major funders of health research expressed interest to work together toward developing a common approach for mapping health research funding flows [ 12 ]. Another good example of a multi-funder collaboration to increase insight in health research investments is the World RePORT website [ 48 ]. On a national level, the United Kingdom has led the way in terms of harmonized reporting by showing it is feasible to collect comparable data on health research funding from all major public funding bodies and charities in a country [ 22 ]. Besides initiatives from funders themselves, there are also several promising initiatives from other parties to address the lack of data on global health research funding [ 1 , 16 , 49 – 51 ]. The recent decision to establish a Global Observatory on Health R&D at WHO in particular may help to improve transparency in this area [ 1 ].

Limitations

Finally, we note that the mapping conducted for this article has had several limitations. First, we have excluded funding organizations in the private for-profit sector (these are listed elsewhere [ 30 ]). Second, national systems for funding health research vary. In many countries, a large amount of health funding is dispersed directly from governments to universities or research institutes via block grants. We excluded these block grants and therefore the public funding organizations that we report on do not all contribute the same share of all health research that is publicly funded in a country. Third, we had to make several generalizations in order to be able to report data across funders that were diverse in their funding distribution mechanisms and reporting systems. For instance, what we have termed ‘targeted’ research funding, is a grey area that ranges from broad prioritized research areas to specific research topics or questions [ 52 ]. Also, funders reported on their expenditures on health research in various formats. Although we have kept track of these varying reporting formats, they decrease comparability across funders. Fourth, we would have liked to exclude overhead costs within project funding (not operational costs of the funder, which we did exclude where possible, but overhead costs of the research organization), to measure only the amount of funding that went to research, but this was not feasible because it was mostly not reported. Fifth, our proposed framework for reporting on funders’ funding distribution mechanisms (Table  4 ) lacks detail. It would have been interesting to also report on more detailed mechanisms, such as funders’ grants for businesses and PDPs/PPPs, but we did not include such analyses because of a lack of comparable data across funders. Sixth, funding organizations frequently make adaptations to their funding strategies, and therefore our findings should be viewed as a snapshot of funders’ expenditures, funding distribution mechanisms and funding patterns during the time of our data collection [ 53 ]. Seventh, in addition to reporting about funding organizations’ funding distribution mechanisms and patterns, we would have liked to report on funding organizations’ priority setting processes as part of this work (another important aspect of how funders decide what gets funded). However, we found that priority setting processes were generally not well-described and highly variable across funders, making it difficult to analyse and report our data. It deserves recommendation that such an analysis is conducted in the future, but the development of a framework for assessing priority setting processes at funders is needed first, potentially based on existing guidance for health research priority setting [ 44 ]. Lastly, and most importantly, our search strategy was limited in scope (see for more detail Additional file 1 ), was aimed only at finding the 10 largest funding organizations of health research in the world, and detailed data were only collected for those 10 organizations.

This study identified the 10 largest funding organizations of health research in the world and showed that these organizations together fund research for $37.1 billion, 40% of all public and philanthropic health research spending globally. It also mapped the funding patterns and funding distributions mechanisms of these funders and showed that there is considerable diversity between organizations in terms of what they fund and how they distribute those funds, highlighting the need for comparative evaluations of the impact of different funding distribution models. Moreover, because many of the data we tried to collect were not available, our study demonstrates that there is a need for increased transparency on who the largest funding organizations of health research are, what they fund, and how they decide what gets funded. As a first step in improving transparency in this area, we have proposed frameworks for reporting on funding patterns (in terms of health problems and research types) and for reporting on funding distribution mechanisms in this article and have established www.healthresearchfunders.org , where we list more than 250 public and philanthropic funders of health research and their annual health research expenditures. We will further expand and update this list of funding organizations in the future and welcome both suggestions and data from all who wish to help us make this database more accurate and more inclusive.

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Acknowledgements

We would like to thank Alison Young, Koos van der Velden, Rob Terry, Noor Tromp, Leon Bijlmakers, Sanne van Kampen and Eric Budgell for reviewing drafts of this article.

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RV conceived the idea for the study, RV and TH developed the study methods, TH conducted most data collection and analysis, RV conducted additional data collection and analysis, and RV and TH wrote the article. Both authors read and approved the final manuscript.

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biomedical research and global health

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  • Published: 19 January 2023

Changing the landscape of global health with Engineering World Health

  • Tojan B. Rahhal 1 &
  • Rachel N. Goforth 1  

Nature Reviews Bioengineering volume  1 ,  pages 8–9 ( 2023 ) Cite this article

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  • Biomedical engineering
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  • Science, technology and society

Engineers need to meaningfully engage in global health by developing solutions that work in the low-resource environments that are a reality for many health-care professionals and patients around the world. Engineering World Health, founded in 2001, aims to inspire, educate and empower the biomedical engineering community to improve health-care delivery around the world. 

Saving equipment is saving lives

According to the World Health Organization (WHO), an estimated 1.8 billion people, or 24% of the world’s population, live in fragile contexts that are challenged in delivering quality essential health services 1 . The disparity in health-care service is partly owed to the lack of adequate medical equipment that is essential to diagnosing diseases, sterilizing tools and performing surgery. Unfortunately, potentially lifesaving equipment is often in an unusable state and needs repairs, additional parts or even power cords. In addition to voltage and power supply issues, a lack of access to consumables or a lack of instruction manuals can render donated medical equipment unusable. If usable, donated equipment eventually falls out of service, and is then discarded or stored. As you read this, millions of pieces of donated critical medical equipment, including oxygen concentrators, infant incubators and patient monitors, are lying abandoned in hospital ‘graveyards’ in low- and middle-income regions 2 .

In addition to supply chain issues to secure replacement parts and lack of access to technical support from manufacturers, hospitals in low-resource regions face major challenges in accessing skilled biomedical equipment technicians, who can install, repair and maintain the equipment they rely on to treat patients. As a result, the quality of care that they are able to provide is limited.

Engineering World Health (EWH) was founded in 2001 by Dr. Robert Malkin and Dr. Mohammed Kiani to improve the health-care infrastructure of clinics and hospitals around the world. As professors at the University of Memphis in Tennessee, they started EWH institute programmes and encouraged university students to engage by providing abroad programmes for students and young professionals in STEM fields, who have a desire to use their skills for good.

Students work with local hospitals

EWH participants receive intensive hands-on technical and language training before serving as volunteer biomedical equipment technicians at hospitals in their host regions (Fig. 1 ). They collaborate with local hospital staff to repair medical equipment and strengthen the health-care technology situation of the facility, improving their ability to provide quality care to patients in need. On average, participants are able to repair 75% of broken equipment, leaving hospitals with dozens of repaired machines worth hundreds of thousands of dollars, and thus, a tangible benefit to the hospital. Moreover, EWH volunteers provide translated instruction manuals, training guides and spare parts.

figure 1

An engineering student works with a local biomedical engineering trainer to repair an infant incubator during Engineering World Health’s 2022 Summer Institute in the Dominican Republic.

Since 2004, over 1,200 volunteers have made over 13,000 equipment repairs in low-resource hospitals; the value of their work and repairs is estimated to be worth over US $26 million. Importantly, participants often leave this experience with a changed mindset on how to approach engineering.

Outside the box engineering

Summer EWH participants often find that they are challenged in unexpected ways; working with few resources at their disposal forces them to be creative and truly think outside the box to solve real-word problems. This past summer, a group of students repurposed disused IV poles to create hand sanitizer stations at their placement hospital. Another example are blood pressure cuffs, a frequently used item that is typically discarded at the end of its lifespan. In the USA, a blood pressure cuff is not an item that a technician will repair — it will simply be replaced because it is relatively inexpensive. In rural parts of Uganda, however, these cuffs can be difficult to locate. EWH volunteers have found that if they are unable to source a replacement, a punctured cuff can be patched using a bicycle tube patch kit. Although this is not seen as a long-term solution, it can keep a patient monitor in use until a replacement cuff is able to be sourced from a larger city. In a small clinic that might only have one patient monitor, this can make all the difference. These problem-solving skills will ultimately make them better engineers in their future careers in research and development or manufacturing.

In reality, most engineering students do not end up working in global health directly, and do not see global health as a viable career path, but instead, often turn towards higher-paying opportunities in corporate, tech and industrial sectors. However, engineers, no matter the role, have a part to play in improving health-care delivery around the world. Engineers can make a real impact on global health by considering challenges posed in low-resource settings in their designs and by striving for greater accessibility. How many power surges can your design handle before failing? Will it hold up outside of a sterile, temperature-controlled operating room? Does it have too many parts that need frequent replacing making it unusable if these parts cannot be imported? We must begin to design with the whole world in mind, developing solutions that work in challenging environments.

However, to create long-term impact on low-resource health-care systems, we also need to strengthen local capacity to keep critical medical equipment in service.

Local training programmes

Increasing local capacities of repairing medical equipment is a sustainable solution to reduce the amount of out-of-service equipment in low-income regions. EWH summer programmes provide opportunities for volunteers to assist in this effort; however, biomedical engineering technician training programmes remain limited in low-resource regions. In partnership with the General Electric Foundation , Duke University, in-country educational institutions, and local Ministries of Health, EWH completed biomedical engineering technician training programmes in Rwanda, Honduras, Ghana, Cambodia, Nigeria and Ethiopia, from 2009 to 2016, teaching local public hospital workers and students to become fully qualified biomedical engineering technicians. These programmes saw out-of-service equipment fall by almost half after teaching hospital staff to do troubleshooting and basic repairs 3 .

In 2022, after a pause on in-person programmes owing to the COVID-19 pandemic, EWH has successfully concluded its first summer institutes in two years with a renewed commitment to increasing local capacity through the inclusion of host-country students in our training programmes. Fifteen of the forty students who participated in our open enrollment programmes in Guatemala and Rwanda were local students pursuing STEM degrees. The students were recruited in partnership with local universities and supported by EWH thanks to support from those who have generously contributed to our scholarship fund.

Next-generation engineers

EWH provides students with a pathway of opportunities to gain engineering skills, while learning about — and improving — global health. Our global network of over 30 university chapters enables students to connect with their peers abroad, compete in EWH’s annual design competition, and organize events centered around low-resource health care and engineering with a purpose. To date, over 500 high school and university students from around the world have participated in EWH’s innovative virtual programmes , working on international teams to develop solutions to global health challenges. Virtual programmes included teams from Uganda, Cambodia, Australia, the Middle East and the USA. Our outreach initiatives have supported over 1,000 young engineers in Title I K-12 schools with free hands-on STEM learning opportunities designed to teach global health concepts through real-world engineering applications.

Investing in the next generation of engineers and health-care professionals is more important than ever as the world faces unprecedented global health challenges. By encouraging more students to pursue STEM, by making engineering more accessible to more students, and by inspiring students and young engineers to think outside the box and use their skills for good, we can make strides in improving health-care delivery across the globe.

World Health Organization. Quality health services. WHO https://www.who.int/news-room/fact-sheets/detail/quality-health-services (2020).

Jones, A. Medical equipment donated to developing nations usually ends up on the junk heap. Scientific American https://www.scientificamerican.com/article/medical-equipment-donated-developing-nations-junk-heap/ (2013).

Business Wire. GE Foundation, Duke University World Healthcare Tech Lab, and Engineering World Health Establish Biomedical Equipment Training Program in Nigeria to Build Skills and Improve Capacity. https://www.businesswire.com/news/home/20140507005817/en/GE-Foundation-Duke-University-World-Healthcare-Tech#.U2paXIFdVeV (2014).

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Acknowledgements

We would like to acknowledge the EWH founders, R. Malkin and M. Kiani, for their dedication to our mission and their continued support of Engineering World Health. We would also like to extend our sincerest thanks to the staff, Board, partners, students and volunteers who make our programmes possible.

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Engineering World Health: https://ewh.org

EWH’s Institutes: https://ewh.org/the-institutes/

EWH’s innovative virtual programmes: https://ewh.org/the-institutes/virtual-programs/

General Electric Foundation: https://www.ge.com/sustainability/ourphilanthropy

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Rahhal, T.B., Goforth, R.N. Changing the landscape of global health with Engineering World Health. Nat Rev Bioeng 1 , 8–9 (2023). https://doi.org/10.1038/s44222-022-00003-7

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biomedical research and global health

Solving global health disparities through medicine and international development

By Carol Kerbaugh

Bharath Ram MPA/ID 2024 wants to use his degrees in medicine and international development to reduce global health disparities  in an affordable and sustainable way.

Bharath Ram MPA/ID 2024 will graduate from the Master in Public Administration in International Development (MPA/ID) Program at Harvard Kennedy School this month. A native of San Antonio, Texas, Ram has been studying medicine concurrently and will graduate from the Baylor College of Medicine in Houston next year. 

Before coming to HKS, Ram was a research intern at the Center for Strategic and International Studies in Washington, D.C., where he focused on global health policy. Previously, he worked in Peru to improve children’s access to nutrition and was involved in social justice initiatives, including those led by Physicians for Human Rights.

For more than 20 years, Ram has practiced Bharatanatyam, a classical Indian dance form that expresses South Indian religious themes and stories. Over the years, he has held dance performances to raise money for social causes, including a refugee clinic in San Antonio.

Ahead of graduation, Ram reflected on his two years at HKS and what he will take with him.   

What was your driving factor for coming to HKS? What were you hoping to get out of this experience?

I read an article in a medical journal a few years ago detailing how people who give birth near oil rigs are at higher risk of peripartum [the period shortly before, during, and immediately after giving birth] complications. It dawned on me that as a medical student, I would only learn about the clinical solutions to treat patients who suffered from these complications, but not the infrastructural, sociopolitical, and economic factors that influenced their health. 

This became even more salient in medical school. I had patients on my rotations who had housing or insurance problems or problems accessing food. I started thinking about how to enact change in a more systemic way. That’s when I discovered the MPA/ID Program. I wanted to gain a broader understanding of the systems and policies that influence how people can access equitable and quality health care in an affordable and sustainable way.

You came to HKS as a concurrent medical school student. How did you see your interests in medicine and international development aligning and how did you explore this at HKS? 

There’s a critical connection between health care and international development. For example, if people live in a thriving economy where they can secure employment, they can better afford the health care they need.

Throughout my time at HKS, I tied my assignments and projects back to health care. My Second Year Policy Analysis —essentially the MPA/ID Program’s thesis—explored opportunities for low-income countries to build resilience against natural disasters in their health supply chains. For other coursework, I wrote essays about policy failures leading to health disparities in Native American communities and how health care facilities are increasingly becoming part of the dynamic of war. I’m grateful to have had the opportunity to cross-register across Harvard, taking courses at the Harvard T.H. Chan School of Public Health and Harvard Law School to explore humanitarian aid and compare health systems around the world. 

Bharath Ram smiles while standing in HKS courtyard

“There’s a critical connection between health care and international development. For example, if people live in a thriving economy where they can secure employment, they can better afford the health care they need.”

Bharath ram mpa/id 2024, who or what made an impression on you during your time at hks.

My summer internship was fascinating. I interned in Nairobi, Kenya, with the University of Nairobi-U.S. Agency for International Development’s Fahari ya Jamii Project . I was on its health systems strengthening team, looking at ways to improve access to—and quality of—care for people living with HIV in Kenya. 

It was my first time in Sub-Saharan Africa and I had never worked in a government health system. It was interesting to see how a public health system works and get on-the-ground experience seeing how people access care, how they access clean water or sanitation, or how they report gender-based violence. 

In addition to my internship, there were two courses at HKS that made a significant impact on me: MLD-201: Exercising Leadership: The Politics of Change and MLD-202: Leadership from the Inside Out: The Capacity to Lead and Stay Alive–Self, Identity, and Freedom . They were particularly formative because I didn’t just learn about leadership; I learned about leadership through a personalized lens. 

What surprised you during your time at HKS?

I’ve been surprised by how appreciative I’ve grown to be of HKS’s incredibly diverse population. There are people here from around the world who have an incredibly diverse array of interest areas. 

It’s certainly different from my medical school experience, where everyone is so focused on health care. Even for me, I’ve been involved in the health care field for so long—I went to a health-focused high school, I went to college and studied biology and biomedical engineering, and now medical school. I’ve always been around people interested in health and medicine.

But attending policy school, where my peers are passionate about so many fields, has been refreshing. It’s been eye-opening to talk to my classmates and learn about their experiences, their visions of the future, and how their work will get them there. I’ve met people who were revolutionaries in their countries. I’ve met people who invented technologies we use every day. I’ve met people who were leaders of their country’s or state’s education systems.

It's been a valuable experience that has made me appreciate my time at HKS.

How do you plan to apply your HKS degree?

My HKS experience has given me a much broader understanding of how health care plays out in the world. 

I have one more year of medical school at Baylor and then residency. After that, I plan to work as a clinician, but my ultimate goal is to contribute to health policy, health systems development, or global health. 

As I finish medical school and enter residency, I hope to apply what I’ve learned at HKS to my patient interactions. I’ve learned frameworks of how to evaluate a program, think through solutions, and consider different stakeholders. Those are lessons I can take with me as I navigate my final year of medical school, into residency and practice, and eventually as a development practitioner.

“I believe everyone deserves equitable access to quality health care—and policy is the ideal tool to create lasting change. As a doctor, I can help one patient at a time; as a policymaker, I can help a population of people for the next 50 years.”

Why is public service important to you.

I grew up in San Antonio, Texas, and had a pretty privileged middle-class upbringing. I didn’t really understand the disparities and inequities in health care access until I was in high school when I learned about the Tuskegee experiment and I traveled to India to visit family and witnessed global health disparities. I was shocked that these preventable or addressable inequities continue to happen in my community and in communities around me. This awakening drove me to be more invested in social justice and public service. 

I believe everyone deserves equitable access to quality health care—and policy is the ideal tool to create lasting change. As a doctor, I can help one patient at a time; as a policymaker, I can help a population of people for the next 50 years. That’s what drove my decision to attend HKS, not the business school or public health school. That’s what is driving me to enter public service. 

Portraits by Lydia Rosenberg

Marcos Barrozo PhD 2024 standing outside with spring trees in the background.

An ordered study of a wild frontier

By Robert O'Neill

Perspectives on Conservation Impacts of the Global Primate Trade

  • Open access
  • Published: 10 May 2024

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biomedical research and global health

  • Gal Badihi   ORCID: orcid.org/0000-0001-5025-906X 1 ,
  • Daniel R. K. Nielsen 2 ,
  • Paul A. Garber 3 , 4 ,
  • Mike Gill 5 ,
  • Lisa Jones-Engel 6 ,
  • Angela M. Maldonado 7 ,
  • Kerry M. Dore 8 ,
  • Jennifer D. Cramer 9 ,
  • Susan Lappan 10 , 11 ,
  • Francine Dolins 12 ,
  • Emerson Y. Sy 13 ,
  • Agustin Fuentes 14 ,
  • Vincent Nijman 15 &
  • Malene F. Hansen 14 , 15 , 16 , 2  

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The global trade in nonhuman primates represents a substantial threat to ecosystem health, human health, and primate conservation worldwide. Most of the primate trade involves trade for pet-keeping, consumption, or biomedical experimentation. We present an overview of international primate trade through five case studies; each describes a different facet of this trade. We draw on published scientific literature, media outlets, and open access datasets, including the CITES Trade Database to build these case studies. Case study 1 describes the role of introduced island populations of Macaca and Chlorocebus in trade for biomedical experimentation; case study 2 covers the global health threats posed by the primate trade, including zoonotic disease transmission once animals enter the trade pipeline; case study 3 addresses the ways that changing patterns of primate trade, from local markets to online, have increased the demand for primates as pets; case study 4 recognizes the role that local environmental activism can play in mitigating trade; and case study 5 shows variation between global regions in their contribution to the primate trade. We recommend greater oversight of primate trade, especially domestic trade within primate range countries, and real-time reporting to CITES to accurately track primate trade. Effective conservation-focused regulations that can minimise the negative effects of primate trade must be tailored to specific regions and species and require transparency, careful regulation, field research, and an understanding of the magnitude of this trade.

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Introduction

The extraction of other-than-human primates (primates hereafter) from their ecosystems, whether for use as pets, consumption, traditional medicine, or use in biomedical experiments, is a substantial concern for their conservation, and several large-scale investigations have shown that the trade in primates adversely impacts free-ranging primate populations (Estrada et al ., 2017 , 2022 ; Nijman et al ., 2017 ; Fernández et al ., 2022 ). By free-ranging, we mean that all primate populations that are not restricted in movement by human-made barriers designed to confine animals to specific locations. The removal of seed-dispersing and pollinating primates from ecosystems negatively affects the growth and demography of plants that other animals rely on for food (Estrada et al ., 2017 ). In addition, many primates have great cultural significance for indigenous human communities (Lambert, 1998 ; Koné et al ., 2008 ) with whom they share their natural habitats and removing primates from these habitats could negatively influence indigenous cultures (Fuentes, 2010 ; Hansen et al ., 2021 ; Estrada et al ., 2022 ). Other studies have identified additional negative ecosystem effects, including reduction in carbon sequestration and changes in predator-prey relationships, when primates disappear from the landscape (Morton et al ., 2021 ; Estrada et al ., 2022 ; Harvey et al ., 2023 ). The removal of primates from their native environments can result in alternative zoonotic pathogen reservoirs in human populations that could potentially start new human epidemics and pandemics. Without stable reservoirs previously sustained in primate populations, these pathogens are more likely to enter and spread in human populations (Wolfe et al ., 2007 ; Devaux et al ., 2019 ; Borsky et al ., 2020 ; Hamers et al ., 2023 ; Campbell et al ., 2022 ). Once in the trade pipeline, primates are rarely (if ever) provided with adequate living conditions and regularly experience unhealthy levels of stress that further exacerbate disease outbreaks (Roberts & Andrews, 2008 ) and raise serious concerns about the ethics of this trade and its implications for animal welfare (Travers & Turner, 2005 ; IFAW, 2008 ). The global primate pet trade, propagated via the internet (Soulsbury et al ., 2009 ; Siriwat et al ., 2019 ; Nijman et al ., 2021 ), and an increasing demand for free-ranging and captive-bred primates for biomedical experimentation, worsen the primate conservation crisis (Maldonado et al ., 2009 ; de Souza Fialho et al ., 2016 ; Subbaraman, 2021 ; Svensson et al ., 2023 ).

The primate trade is a global industry. The estimated market value of legal exports of just one species of primate, the long-tailed macaque Macaca fascicularis , from ten countries from 2010–2019 was USD 1.25 billion (Hansen et al ., 2022b ). However, tracking the trade in primates globally is difficult, as much of the trade happens within countries and some of the trade (domestic and international) is illegal and therefore undocumented (Norconk et al ., 2020 ; Hansen et al ., 2021 , 2022a ). It is particularly challenging to track the domestic trade within primate range countries, whether for biomedical and pharmaceutical research, primate meat, pets, or traditional medicine, because in most cases this is not documented. The Convention on International Trade in Endangered Species of Wild Fauna and Flora (CITES), which went into effect in 1975, is a binding international agreement among parties that regulates and documents wildlife trade (CITES, 2022 ). Member states of CITES are expected to report their yearly international export and import of CITES-listed species no later than November of the following year (CITES, 2022 ). These annual reports make it possible to track the numbers for legal, international wildlife trades, and can be a helpful tool for research into the impact of trade on wildlife populations (Nijman et al ., 2011 ; Estrada et al ., 2017 ; Hansen et al ., 2022b ), although legal CITES-regulated trade may not result in sustainable harvest of wildlife (Hughes et al ., 2023 ). In addition to legal domestic and international trade, there is an unknown level of illegal trade. Examples of illegal trade include trade that is in clear violation of one or more pieces of domestic or international legislation or trade that only partially meets the requirements for legal trade (i.e., when primates are traded for reasons other than those for which permission was granted) (Warne et al ., 2023 ).

To understand the impact of the trade on free-ranging populations, it is important to identify the country of origin, because primates can be reexported. Reexport is defined as the export of primates who were previously imported into the exporting country from other countries (CITES, 2022 ). It also is important to determine whether individuals are captive-bred or wild-caught, and whether captive individuals are defined as captive-born F1 (first generation, born in a captive setting) or captive-bred F2 (second generation or above, with both parents having been born in a captive setting). The EU now requires all imported primates to be at least F2, potentially reducing its impact on free-ranging populations.

Primates are traded globally for three primary reasons: as pets, for consumption (including for food and medicinal purposes), and for laboratory experimentation. Primates are sourced either directly from free-ranging populations—as is most often the case for the bushmeat trade (Nuñez-Iturri & Howe, 2007 ; Hicks et al ., 2010 ; Covey & McGraw, 2014 ; Cronin et al ., 2017 ) – or from breeding farms, as is mostly the case for primates used in laboratory research. Once in the trade, they may be transported within domestic markets or exported into international markets. Although domestic markets often are harder to track, because they are less likely to produce trade records making it difficult to generate quantitative estimates, international trade in specimens and products can be equally difficult, especially when illegal (e.g., the trade in primate parts into Europe; Svensson et al ., 2023 ).

All primate species are listed on either CITES appendix I (which lists species for which commercial international trade in wild-caught individuals is prohibited) or appendix II (which lists species for which international trade is regulated) and require CITES export permits. Some species also require import permits (all appendix I species, in addition to primates imported into specific countries that have put in place more stringent measures). However, there are frequent discrepancies in reports of imported and exported primates from each country. It is likely that a proportion of individuals traded and listed as captive-bred are actually wild-caught because of falsification and mislabelling of records on CITES permits (SSN, 2012 , 2015a , 2015b ; U.S Attorney’s Office, 2022 ; Warne et al ., 2023 ). Moreover, because trade in wild-caught primates is illegal in many regions, sellers are incentivised to misrepresent the number of primates captured from wild populations and claim that they are captive-bred. This makes it difficult to assess the level of threat to wild primate populations (RFA, 2023 ; Delgado, 2023 ; Warne et al ., 2023 ).

Our goal is to provide readers with accurate and reliable information to better comprehend the magnitude and diversity of the primate trade. There is no single available database that documents all aspects of the primate trade. Even where data are available, data on domestic trade, whether legal or illegal, disease transmission associated with primate trade, online trade, and the quantitative impact of Nongovernmental Organizations (NGOs), are not reported in a standardized way. Therefore, we examine the global primate trade through five case studies that draw on published literature and data from academic papers, media reports, government or legal reports, and (where possible) data from the CITES Trade Database. We begin by discussing four prominent issues within the global primate trade; namely trade in introduced primates (case study 1 ), the public health risks arising from the primate trade (case study 2 ), the role of the internet in the primate trade (case study 3 ), and the role of environmental activism in combating the illegal primate trade (case study 4 ). The final case study (case study 5 ) uses the CITES Trade Database, for the period between 2010–2022, to illustrate patterns of reported trade across primate species, regions, and purposes. These case studies represent examples of the wide-ranging impact that the primate trade has on several, disproportionately affected, primate species and the human-primate interface.

Case Study 1. Trade in introduced primates

We exemplify the trade in introduced primates through the trade of Chlorocebus sabaeus and Macaca fascicularis from islands in the American tropics (St. Kitts, Nevis, and Barbados) and Africa (Mauritius), respectively. The islands of St. Kitts, Nevis, and Barbados have been home to Chlorocebus sabaeus (African green monkeys) since the 1600s, when the monkeys were transported by colonists and merchants from West Africa to the Caribbean (Dore, 2017 ). A recent study estimated that some 30,000 Chlorocebus sabaeus inhabit St. Kitts (which is 168 km 2 ) (Dore et al ., 2023 ). While the islands have unique histories, topographies, and land use patterns that impact the dynamics of their respective human-monkey interfaces, problems with monkeys and negative perceptions of them have increased dramatically on all three islands to the point where they are now locally considered an invasive species. These monkeys are viewed as pests because of their consumption of local crops; they were officially declared as vermin in Barbados in 1682 (Dore, 2017 ), and bounties have been established for culled monkeys on all three islands in recent years. While detailed data are only available for St. Kitts and Nevis, these reports show substantial negative impact to the islands’ local economy and food security, with monkey crop damages amounting to one million USD annually (Dore, in prep).

As a result of their abundance and bad reputation, and the local pressure for monkey control, Chlorocebus sabaeus are harvested for use in biomedical research (Jasinska et al ., 2013 ). Because of their perceived overabundance and lack of diseases, the Behavioural Science Foundation was established on St. Kitts in 1968 to use the Chlorocebus sabaeus population in research. In 1976, an export market was developed for polio vaccine production. In 1982, a second biomedical research facility, the St. Kitts Biomedical Research Foundation, was developed increasing the supply of healthy animals. Monkeys are still trapped today by using a technique developed in the 1970s by Mr. Joseph Cabey, by which as many as 20–30 animals can be trapped in a single cage at one time (Dore et al ., 2023 ).

Today, most monkeys trapped on the islands are used in local facilities, because exporting monkeys from these islands is challenging. If shipped, private charters are used, which is expensive compared with commercial airlines. In the past 10 years, 3,361 Chlorocebus sabaeus were shipped from St. Kitts and Nevis to the United States, and 827 monkeys were shipped from Barbados to the United States (U.S. Centers for Disease Control and Prevention, 2023 ). These monkeys were primarily wild-born and shipped after a quarantine period of at least 32 days. Recent exportation figures indicate that 0.3%–1.8% of the island’s monkey population is exported each year.

A similar case is observed in Mauritius, another relatively small island (1,900 km 2 ), where colonists introduced Macaca fascicularis in the 1600s (Sussman & Tattersall, 1981 ). As with the Chlorocebus sabaeus in the Caribbean islands, Macaca fascicularis are seen as posing ecological threats to the island’s natural flora and fauna (Sussman & Tattersall, 1981 ; Gumert, 2011 ; Sussman et al ., 2011 ). For the past decade at least, Mauritius has been one of the leading global exporters of Macaca fascicularis (Hansen et al ., 2022a , 2022b ), many of which are wild-caught (CITES Trade Database, 2022). Due to a potential founder effect, in which a bottleneck increases genetic homogeneity in introduced populations, low genetic diversity of the Mauritius Macaca fascicularis also makes them sought-after for biomedical research (Kawamoto et al ., 2008 ). The free-ranging population on Mauritius is estimated to have decreased from 40,000 in the 1980s to 10,000 in just three decades in response to human management efforts (Sussman et al ., 2011 ). Trade in wild-caught individuals is substantial when primates originate from introduced populations (CITES Trade Database, 2024 ); however, introduced or not, other risks remain with capturing, transporting, and using wild-caught primates for research: for example, the transmission of zoonotic diseases to humans and the poor welfare of trapped and exported animals.

Case Study 2. Public health risks of primate trade

Capture and trade in primates can cause: 1) transmission of pathogens between humans, primates, and other animals (Pereira et al ., 2022 ; WCMC, 2022 ); 2) introduction and spread of pathogens in captive and noncaptive primate populations (Oliveira & Santos, 2023 ); and 3) risks to primate ecosystem health after removal of keystone primate species (Peres & Michalski, 2006 ; Gamalo et al ., 2023 ).

Just before the global Severe Acute Respiratory Coronavirus 2 (SARS-CoV-2) pandemic, in an effort to characterize the risk of spillover events associated with particular species, scientists assessed the presence of zoonotic viruses in mammals and concluded that only a fraction of mammalian species harbor zoonotic viruses. Among that select group, rodents, bats, and primates accounted for three quarters of the zoonotic viruses that had been described (Johnson et al ., 2020 ). Subsequently, researchers interested in the inherent zoonotic disease risks associated with international animal trade used the CITES database, coupled with recent analyses by Johnson et al . ( 2020 ), determined that trade in two primate species— Macaca fascicularis and Macaca mulatta —carried the greatest potential for zoonotic disease (Borsky et al ., 2020 ).

On multiple occasions over the past three decades, primates imported into the United States as part of the biomedical trade have arrived with pathogens capable of causing the next global pandemic, including filoviruses and Burkholderia pseudomallei (Jahrling et al ., 1990 ; Roberts & Andrews, 2008 ; Taetzsch et al ., 2022 ). Primate immune systems struggle to withstand the stress of capture and exposure to pathogens while in captivity and transit, and individuals frequently become ill from pathogens that their immune systems would normally contain (Roberts & Andrews, 2008 ). Further demonstrating these risks, a recent publication documented the presence of zoonotic pathogens, including Yersinia , Shigella , Campylobacter , Salmonella , and Mycobacterium , among macaques recently imported for use in primate experimentation (Johnson et al ., 2022 ). The authors reported that these animals were infected despite having cleared the Centre for Disease Control and Prevention (CDC) mandatory quarantine in the United States. In 2022, primate laboratory workers were referred for treatment for tuberculosis exposure following contact with imported Macaca fascicularis who had been transported to Michigan after having been released from the CDC-mandated quarantine in Florida (Hicks, 2023 ).

Pathogens not only threaten human and primate health, but they also introduce variability and unreliability into biomedical research, compromising experimental data from these animals (Weston, 2023 ). Testing protocols for specific infectious diseases are not always reliable, particularly the tuberculin skin test assay used to screen monkeys during CDC-mandated importation quarantine (Yee et al ., 2022 ). Furthermore, some vaccinations administered to primates before transit also can interfere with testing protocols for other diseases. For example, the measles vaccine reduces the response to tuberculin—a protein used to test for tuberculosis (TB)—for up to 28 days (Panarella & Hursh, 2022 ).

In 2019–2022, the number of imported primates who were dead on arrival in the United States or who died or were killed during the mandatory 31-day quarantine increased by more than 100% (2018 fiscal year N = 66, 2021 fiscal year N =136) according to public CDC records obtained by PETA (Supplementary Information ESM 2 ). The CDC confirmed that between 2010 and 2020 no confirmed cases of TB were detected in shipments undergoing mandated quarantine (Supplementary Information ESM 3 ; Swisher et al ., 2024 ). But from 2021 to 2023, at least ten shipments contained monkeys who were confirmed infected with TB (Swisher et al ., 2024 ), including a strain of the disease that originated in monkeys from Southeast Asia and was never before seen in animals imported into the United States. One shipment reported that 4.8% (N = 26/540) of the animals were confirmed positive with this novel strain of TB, the highest percentage of animals infected ever recorded by the CDC (Swisher et al ., 2024 ). In July 2023, the CDC issued a veterinary health alert to stakeholders, including the Association of Primate Veterinarians, National Association of Animal Health Officials, the National Association of State Public Health Veterinarians, and all CDC-registered primate importers, stating that “While the majority of imported NHP [Non-Human Primates] with TB infection were identified and euthanized during CDC-mandated quarantine, some were detected after the NHP had been released from quarantine. Infected NHP identified post-quarantine included Macaca fascicularis imported from Mauritius and Southeast Asia between 2020 and 2022. These cases were identified 5 months to 2 years after NHP were released from quarantine and had epidemiologic links to other TB cases in imported NHP. MTBC [Mycobacterium tuberculosis complex] species isolated from imported NHP during and after CDC-mandated quarantine included M. bovis, M. caprae, M. orygis , and M. tuberculosis .” (ESM 2 , pp 1-2).

The preparation and transportation methods used to move primates across borders, along with ineffective quarantine and testing techniques for imported primates, may exacerbate the risk of disease outbreaks in exported captive populations and reduce the probability of diseases being detected during quarantine. This was demonstrated when 216 of 360 Macaca fascicularis imported from Cambodia into the United States in 2020 and 2021 arrived infected with Burkholderia pseudomallei , a bacterium classified as a Tier 1 Select Agent in the United States and the causative agent of the often-fatal disease melioidosis (Taetzsch et al ., 2022 ). CDC-mandated quarantine failed to detect all of the infected monkeys (Taetzch et al ., 2022 ).

Disease transmission will always be an underlying risk in international animal trade; however, several steps may be taken to reduce this risk. Ending the use of wild-caught individuals in trade and laboratory experimentation and focusing on captive-bred, habituated, and trained primates will reduce the stress experienced by animals during transport and captivity and can help to limit immune system suppression, thereby reducing the likelihood of infection. Additionally, quarantine protocols must be informed by the risks associated with transporting and processing individuals from specific regions according to the pathogens present in the exporting and importing countries and the efficiency of disease testing (United States Government Accountability Office, 2023 ).

Case Study 3. The global change in trade patterns: Going from physical to online markets for pet trade

For most of the last century, in many parts of the world, the place to buy a pet monkey would have been the local pet shop or the local wildlife market (Duarte-Quiroga & Estrada, 2003 ; Travers & Turner, 2005 ; Nijman et al ., 2017 ). This is still the case in many places, particularly in countries where primates are native or, in more recent times, where primates are bred specifically for the domestic pet market. For international trade, a restricted number of well-connected companies shipped almost exclusively wild-caught primates around the globe; traders sourced primates from their specific trade networks and individual contacts. As internet access has become increasingly widespread, trade has shifted dramatically toward an online market, both internationally and domestically (Bergin et al ., 2018 ; Nijman et al ., 2019 ; Siriwat et al ., 2019 ). With the recent popularization of e-commerce and increased access to the internet, suppliers and sellers are provided with an unprecedented connection to potential new consumers and expanding markets.

In the early-to-mid 2000s, the first published studies specifically addressing the online trade in primates showed that offers of primates for sale were made in classified advertisements, on auction sites, and on specialists’ websites (Travers & Turner, 2005 ; IFAW, 2008 ). However, these studies were short in duration and focused on Europe and North America (Travers & Turner, 2005 ; IFAW, 2008 ). In recent years, more insight into the online trade in primates has been gained through longer and more systematic studies, either focused on specific taxa (e.g., slow, slender, and pygmy lorises Nycticebus , Loris , and Xanthonycticebus : Kitson & Nekaris, 2017 ; Morgan & Nijman, 2020 ; Musing et al ., 2015 ; Macaca sylvanus : Bergin et al ., 2018 ; apes: Nijman et al ., 2021 ) or all primates (Seaboch & Cahoon, 2021 ; Zainol et al ., 2018 ; Nijman et al ., 2023 ).

Despite many social media platforms specifically banning the sale of live animals or the sale of globally threatened wildlife, sites such as Facebook and Instagram have emerged as significant platforms where this trade takes place (Malaysia: Krishnasamy & Stoner, 2016 ; Thailand: Siriwat et al ., 2019 ; Indonesia: Nijman et al ., 2021 ; Philippines: Gomez et al ., 2022 ; South Africa: Shivambu et al ., 2021 ; Brazil: Wyatt et al ., 2022 ). A wide range of species are offered for sale over the internet, but marmosets, tamarins, capuchins, squirrel monkeys, lemurs, galagos, and slow lorises—generally some of the smallest primate species—appear most frequently for sale (Table I ). These are often, but not always, captive-bred within the countries where they are offered for sale, especially where the sale of (nonnative) primates as pets is legal (e.g., some states in the USA (Norconk et al ., 2023 ), Thailand, South Africa, United Kingdom, Denmark). In other countries, such as Indonesia, Malaysia, and the Philippines, sellers continue to illegally offer wild-caught native species. In a recent global analysis assessing the ease of buying a pet primate online, the best predictors were the internet penetration rate (i.e., the percentage of the total population of a given country or region that uses the internet; below a certain level it is economically not feasible to move from brick-and-mortar markets to online markets) and the human-development index (possibly reflecting purchasing power, internet access, and operational logistical networks), but not the corruption perception index, GDP (Gross Domestic Product) per capita, or primate richness (Nijman et al ., 2023 ).

The ability to purchase products or services online is dependent on the internet penetration rate and the infrastructure in place to distribute live animals rapidly from sellers to buyers. In the coming years, more and more countries are expected to increase their internet infrastructure allowing e-commerce to flourish. This will include many primate range countries that, hitherto, have been constrained. We expect that this will lead to a concomitant shift of the primate pet trade from traditional to online markets. The engagement of national and international officials and NGOs is crucial to monitor the trade and protect free-ranging primate populations.

As the online trade in primates for personal use (such as pets) grows, social media companies—who have become the primary markets for this trade—and governments must enforce stricter protocols for monitoring and reporting illegal primate trade online. These protocols could involve more efficient methods for identifying falsified export/import permits, and additional strategies to recognize online advertisements for primate sales. Beyond their use as trading markets, the images and videos shared on social media platforms (e.g., of humans caring for primates or primates dressed in human clothes) have been shown to increase the demand for primates as pets (Cheyne et al ., 2022 ; Norconk et al ., 2020 ; Social Media Animal Cruelty Coalition [SMACC] 2022 , 2023 ; Waters et al ., 2021 ). Social media platforms can therefore set and enforce specific guidelines for the type of primate-related content that can be posted (Waters et al ., 2021 ). Finally, while governments can impose stricter restrictions on primate pet owners, including the requirement of specific permits to keep primates, we recommend prohibiting primate pet keeping as a more effective strategy given the current failure of governments and international organizations in enforcing permit systems and recognizing forged documents. Some countries in the European Union have already banned the use of primates as pets altogether because of the welfare concerns of keeping primates in human environments, the conservation implications of removing primates from their wild populations to supply a pet trade, and the risks of zoonotic disease transmission associated with the close contact between human and nonhuman primate pets (Food and Agriculture Organization of the United Nations, 2022 ). This movement may have to include financial sanctions to pressure noncompliant companies to invest in effectively combating wildlife crime (Morcatty et al ., 2022 ; SMACC, 2022 ; 2023 ).

Case Study 4. The role of Environmental Activism in combating illegal primate trade, exemplified by the night monkey trade in Colombia

The global primate trade puts increasing pressure on free-ranging primates, for many of which population estimates are inaccurate (Wessling & Surbeck, 2023 ). For the period 1975 to 2018, CITES reported that 66% of legally traded live Aotus spp . (night monkeys) were sourced from range countries, where 33% of all exported live individuals were wild-caught from Peru ( Aotus vociferans and Aotus nancymaae ) (Shanee et al ., 2023 ). These were mainly traded for commercial or scientific purposes. Among individuals from range countries (N = 123 individuals, including dead animals, parts, or derivatives), Aotus nancymaae were the most common (40%), followed by Aotus vociferans (24%) (Shanee et al ., 2023 ). From 2007 to 2008, some 4,000 wild-caught Aotus spp . were illegally traded across the Brazil-Colombia-Peru border (Maldonado et al ., 2009 ; Maldonado & Peck, 2014 ; Maldonado et al ., 2023 ). In some cases, Aotus nancymaae and Aotus vociferans were captured under permits from environmental authorities and used for biomedical research (such as unsuccessful vaccine development: Graves & Gelband, 2006 ; Goyes, 2015 ) and then released back into the wild (Maldonado et al ., 2009 ; Maldonado & Lafon, 2017 ; Maldonado et al ., 2023 ; Maldonado & Peck, 2014 ). Lack of health assessments and follow-up studies post-release makes it impossible to determine the effect of capture, translocation, and potentially introduced diseases on the survival of released animals, as well as the impact of these translocations on the stability of free-ranging populations whether by introducing human-associated pathogens or disrupting demography or natural disease cycles (Nichols et al ., 2017 ).

In 2014, the Colombian Research Funding Agency (COLCIENCIAS), granted approximately USD 1.2 million to Foundation Institute of Immunology of Colombia (FIDIC) (Maldonado & Lafon, 2017 ) after their SPf66 malaria vaccine was declared “inactive” by the World Health Organization with only 26% effective protection (Graves & Gelband, 2006 ; World Health Organisation, 2006 ). Following these findings, the local conservation NGO, Entropika, started a long-term legal and media battle resulting in policy changes by local indigenous authorities, who no longer granted trapping permits, and changes to national laws for regulating wildlife extraction (Gil-Botero, 2013 ). Today, the FIDIC facility in Leticia (Colombia) is closed for contravening the obligations of their latest permit (Wolovich et al ., 2024 ), and in March 2023, Corpoamazonia, the regional environmental authority granting trapping and research permits, ruled against FIDIC for exceeding its annual extraction quota in 2010, applying economic and administrative sanctions (Corpoamazonia, 2023 ).

In another example of illegal use of primates, the biomedical facility Foundation for Primate Center Caucaseco (FUCEP), in Valle del Cauca (Colombia), began malaria research in 2001 using Aotus spp . (night monkeys: Aotus griseimembra and Aotus lemurinus ) and Saimiri spp. (squirrel monkeys) (Arévalo-Herrera et al ., 1998 ). FUCEP has received USD 17 million from the National Institute of Health U.S. since 2003 (Cambio,  2023 ). On February 17, 2023, the specialist group against animal abuse, Gelma (Grupo Especial para la Lucha contra el Maltrato Animal), which is part of the Prosecutor General (GELMA-FISCALIA) and environmental authorities, confiscated 108 night and squirrel monkeys from FUCEP. This facility was closed for conducting illegal and unethical research and for animal abuse (CVC, 2024 ).

Both cases exemplify how environmental activism supported by legal actions and research can expose illegal primate trade and biomedical research and protect endangered primates. Entropika monitors and campaigns against wildlife trafficking between the Colombia-Brazil-Peru Amazonia borders, collaborates with policy makers (Senators) to improve environmental law enforcement, and provides evidence for the revision of laws related to wildlife use in Colombia (Gil-Botero, 2013 ). A good example of collaboration between stakeholders and primatologists is the inclusion of Aotus nancymaae in the list of threatened species for Colombia and the upgrade of its IUCN category from Vulnerable to Endangered (MADS, 2024 ). Entropika also conducts capacity building and educational programs for indigenous communities to provide them with alternatives to wildlife trafficking (Wolovich et al ., 2024 ; Sollund & Wyatt, 2022 ), highlighting that wildlife cannot be protected unless the people are provided with both economic alternatives and improved living conditions (Sollund & Wyatt, 2022 ). Their impacts demonstrate that local NGOs can help guide conservation agencies and management authorities and pressure trading companies and laboratories. Importantly, local NGOs may have strong connections with local communities and stakeholders, which may facilitate better outcomes through community engagement in conservation efforts (Estrada et al ., 2022 ). Domestic trade is not reported anywhere, making it difficult for policy makers and conservationists to assess the true threat to free-ranging populations and respond accordingly. An open access database, where NGOs and local enforcement agencies report confiscations, as well as the domestic trade, would greatly improve our ability to track these illicit trades and assess their impacts on free-ranging primate populations.

Case Study 5. Overview of global international trade in live primates using the CITES Trade Database

While NGOs and activism can be effective in combating illegal primate trade at a local scale, it also is critical to examine regional and global issues related to the live primate trade. Below we explore global patterns of primate trade across regions, species, and purposes using the CITES Trade Database. We included all trade in live primates between 2010 and 2022 as reported by exporting and importing countries (2010–2022 downloaded in March 2024; CITES Trade Database, 2024 ). We acknowledge that all data from most recent years may not have been reported to CITES yet (see Kolby & Reaser, 2024 for a critical evaluation of CITES data). First, we explored global patterns in trade, then combined data from different countries into three regions: Central and South America (hereafter American tropics including the Caribbean), Africa, and Asia and the Middle East (hereafter Asia). We reported and visualized the proportion of primates traded globally, and for each region, from different sources and for different purposes. We took definitions of source codes and purpose codes directly from the CITES Database Guide (CITES, 2022 ). We decided not to include any specimens traded because of the difficulties in interpreting the data in the CITES Trade Database; however, the specimens trade also affects thousands of primates. There may be discrepancies in how management authorities interpret the different purpose and source codes.

From 2010–2022, we found that 142 exporting CITES parties (countries that are signatories to CITES) reported exporting a total of 637,308 live primates. Although 188 species of live primates were traded, Macaca were exported in vastly higher quantities than any other genus. Macaca exports (569,200 individuals) were 32 times greater than exports of the second-most traded genus:

Callithrix (marmosets; 17,536 individuals).

The three most traded genera were exported at a somewhat stable level over each of the 13 years between 2010–2022 (Supplementary Information ESM 1 ). However, the less traded genera fluctuated markedly over time and many species showed greater fluctuation between 2020–2022 (Fig. 1 ).

figure 1

Overview of the ten most exported live primate genera 2010–2022 globally as reported by the CITES Trade Database (CITES Trade Database, 2024 ). Counts are presented on a log-scale for figure clarity and comparability among genera. Before log-transforming the data, we added one to all yearly quantities to account for zero values. The year 2022 is highlighted to illustrate potentially incomplete information. The raw numbers of exports for each genus per year can be found in the Supplementary Information (ESM 1 ).

In general, reported imports and exports differed each year (Fig. 2 ). However, in 2019–2021, this discrepancy increased and reached an extreme with 57,207 individuals listed as exported but only 17,473 individuals imported in 2021. The SARS-CoV-2 pandemic may have contributed to this trend; however, it is unclear whether this decrease in reported exports and imports truly corresponds to a reduction in trade or simply a delayed report to CITES. Since the beginning of the pandemic, countries like the United States—one of the largest importers of primates for biomedical research—have increased their demand (Subbaraman, 2021 ). Recent investigations led by media outlets revealed that China’s booming biomedical and pharmaceutical industry has contributed to the large-scale illegal trading of wild-caught primates, as legal breeding facilities fail to keep up with the increasing demand (Pasha, 2023 ). These reports suggest that the reduction in reported trade in 2020–2022 is unlikely to indicate a true reduction in international primate trade. Instead, the discrepancy between the reported imported and exported primates may have resulted from communication breakdowns during the SARS-CoV-2 pandemic, which led to skewed data reporting internationally. Furthermore, when inspecting the import numbers of Macaca fascicularis (the most traded species) during the pandemic, there was a change in trade patterns, with more exports coming from range countries instead of China. This is expected to have had a significant effect on free-ranging populations (Hansen et al ., 2022b ; Warne et al ., 2023 ). The total U.S. CDC primate import numbers increased by 49% from 21,861 individuals ( Macaca fascicularis constituted 20,110 ~ 92%) in 2017 to 32,709 individuals ( Macaca fascicularis constituted 31,522 ~ 96%) in 2022. In 2017, 29% (6,029 individuals) of Macaca fascicularis imports originated from Cambodia (CITES Trade Database, 2022). In 2022, it was 62% (19,618 individuals).

figure 2

Total number of primates, of all genera, reported to the CITES Trade Database (CITES Trade database, 2024 ) as exporter (dark blue bars) and importer (light blue bars) each year across 2010–2022. These data include all live primates reported from all countries, from all sources, and for all purposes. The year 2022 is highlighted to illustrate potentially incomplete information.

Whereas China historically exported many captive-bred primates, they appear to have reduced macaque exports for research in 2019, and some evidence suggests countries that took over exporting macaques (Cambodia, Thailand, Vietnam) were not able to provide the same number of captive-bred individuals, leading to falsified source codes on CITES permits (U.S Attorney’s Office, 2022 ; Warne et al ., 2023 ). However, when these data were further interrogated, reports from importing countries still indicate that a substantial number of primates were traded from China (Kolby & Reaser, 2024 ). The increase in the proportion of wild-caught exports from Asia in 2022 may represent a reaction to reduction (or perceived reduction) of exports from China; however, it also may be due to backlog of reports from some exporters that have not yet been reported to the CITES Trade Database leading to overall lower numbers in the 2022 export counts (Fig. 2 ). The CITES Trade Database may underestimate the number of wild-caught primates traded, as the capture and trade in free-ranging primates is illegal in many countries (Covey & McGraw, 2014 ; Shanee et al ., 2017 ; Norconk et al ., 2020 ). Breeding centers often rely on wild-caught individuals for the replenishment of their breeding population, which is not necessarily documented by CITES or by primate breeding facilities (Hansen et al ., 2021 ).

The total export of live primates in 2010–2022 consisted of the following primary source codes: C – captive-bred (75%, N = 440,263), F – born in captivity (18%, N = 115,333), W – wild-caught (7%, N = 41,270). Captive-bred individuals, in contrast to individuals born in captivity, only include those who were bred in a controlled environment. The number of exported live primates differed markedly between continents. Until 2017, most primates exported from Africa were born in captivity. In 2018, however, the greatest proportion of primates exported from Africa (61%, N = 1,936/3,149) were wild-caught. In 2019, 2020, and 2021, primates exported from Africa were mostly bred in captivity (51%, N = 6,400/12,458; 57%, N = 8,310/14,543; and 49%, N = 8,420/17,241 respectively); however, in 2022 the proportion of wild-caught primates exported from Africa increased again to 54% (N = 1,301/2,425). Before 2022, most primates exported from Asia were bred in captivity; however, in 2022, the largest proportion of primates exported from Asia were wild-caught (46%, N = 528/1,168). Across years the majority of primate exported from the American tropics (mean = 91%) were wild-caught (mean wild-caught exports = 1,199; mean total export = 1,443) (Fig. 3 ).

figure 3

Proportion of live traded primates from each region (Africa, the American tropics, Asia) from different sources (captive-bred; born in captivity; wild) as reported by the CITES Trade Database (CITES Trade Database, 2024 ). The year 2022 is highlighted to illustrate potentially incomplete information.

The trade purposes of live primates exported in 2010–2022 consisted of the following source codes: M – medical (including biomedical research) (19%, N = 103,080), S – scientific (also including biomedical research) (7%, N = 40,307), T – commercial (70%, N = 438,577), Z – zoo (1%, N = 5,581). Commercial refers mainly to live individuals traded for pharmaceutical research and to a lesser extent legally traded and pets; trophies, primate parts are also included but are not captured in this study as they do not constitute live individuals. Across the 13-year period, while primates exported from Africa were mostly reported as exported for medical purposes, primates exported from Asia were mostly reported as exported for commercial use. There was more variation in the reported purposes of primates exported from the American tropics; however, the leading purposes were still medical and commercial (Fig. 4 ).

figure 4

Proportion of live traded primates from each region (Africa, the American tropics, Asia) for different purposes (breeding in captivity; medical (including biomedical); scientific; commercial (including pharmaceutical); zoo) as reported by the CITES Trade Database (CITES Trade Database, 2024 ). Only purposes that represented more than 1% of exports in at least one of the regions for at least one of the years are included for figure clarity. The year 2022 is highlighted to illustrate potentially incomplete information.

The main primate genera exported out of Africa were Macaca and Callithrix (together comprising >80% of exports). While some Macaca species are native to Africa, the CITES database reported no live exports of Macaca species native to Africa from Africa between 2010–2022, the 92,471 Macaca exported were Macaca fascicularis, which are not native to Africa, and which were exported exclusively from Mauritius. The second most exported genus ( Callithrix ) and three of the other genera ( Saguinus, Saimiri, Cebus ) that make up the ten most exported primates from this continent (Fig. 5 a) were also nonnative to Africa. Although it is easy to find local, small Callithrix breeders who advertise for the pet trade online, large-scale breeders who could produce more than 15,000 animals over 13 years for export, are not easily identifiable. Johnson & Anestidou ( 2019 ) reported that there were 6,000 Callithrix held in research labs in Asia, Europe, North America, and the American tropics. Their review did not document Africa as having or exporting captive Callithrix . However, according to the CITES Trade Database, between 2010 and 2022, live Callithrix exports were almost exclusively from South Africa (15,561/15,576). The primary driver for the increased yearly demand for common marmosets remains unclear; however, it coincides with Callithrix becoming an important biomedical model internationally for research into ageing, infectious diseases, obesity, neurology, heart disease, reproductive biology, cancer, and the microbiome (Johnson & Anestidou, 2019 ).

figure 5

Top ten exported live primate genera from A ) African, B ) Asian, and C ) the American tropics (including the Caribbean) from 2010–2020 as reported by the CITES Trade Database (CITES Trade Database, 2024 ). Y-axes are cut between 17,500 and 72.500 individuals in A and between 150 and 510,650 in B for better visualization as the number of macaques, exported from Asia and Mauritius in Africa were much larger than other genera.

The most exported primate genus from Asia was Macaca, with more than 400,000 individuals exported over the 13-year period. All other primate genera were traded in much lower quantities, with no other genus having more than 3,000 individual exports reported to CITES over this period (Fig. 5 b). Within the genus Macaca , M. fascicularis were the most exported (N exports = 419,684), followed by rhesus macaques ( M. mulatta ; N exports = 23,285) and pig-tailed macaques ( M. nemestrina ; N exports = 1,783). As of 2022, both Macaca fascicularis and Macaca nemestrina are listed by the IUCN (International Union for Conservation of Nature) as Endangered (Hansen et al ., 2022a ; Ruppert et al ., 2022 ). Finally, Saimiri was the most traded genus from the American tropics between 2010–2022 (Fig. 5 c). More than 7,700 individuals were exported during this period. Chlorocebus (N = 5,314) and Cebus (N = 2,418; including Sapajus ) were the second and third most exported taxa. The genus Chlorocebus is not native to the American tropics.

While the most traded primate genera (as reported to CITES) were native to Asia, Africa, and the American tropics, these taxa are often exported out of regions in which they are nonnative (for example, introduced populations on St. Kitts and Mauritius). If individuals are captive-bred, this should not have a marked effect on free-ranging populations. However, the impact on free-ranging populations can vary across geographical regions—for example, wild-caught individuals compose the majority of exports from the American tropics but not Africa and Asia. The high numbers of captive-bred macaques traded may obscure the effects of trade on free-ranging populations of other species from which fewer individuals, but more wild-born individuals, are traded. For example, the proportion of wild-caught primates in the American tropics and in Africa was higher than in Asia from where the majority of captive bred macaques were exported.

These numbers represent the only available internationally regulated trade numbers at the species-level. We do not know the quantity of free-ranging primates killed for the primate meat trade, the quantity of free-ranging primates taken to breeding centres as breeding stock or to supply the international trade, or the quantity captured for the pet and entertainment trades. We do not know the number of wild-caught primates that remain part of the domestic trade and the number traded illegally internationally. Furthermore, the accepted scientific names of several primate species have changed over time, leading to different names being used for the same species or the same names being used for different species. For example, the most common native primate exported from Africa is Chlorocebus , commonly named “savanna monkeys,” followed by Cercopithecus , commonly named “guenon.” While these are two different genera of monkeys, changes in classification of these genera may have led to inaccurate reports for the numbers of individuals exported/imported. For example, vervet or savanna monkeys were previously classified as Cercopithecus —a name still used today on some websites (African Wildlife Foundation, 2023 ).

We provided an overview of the international live primate trade through five case studies, each highlighting a different area of concern in primate trade. Together they illustrate the importance of combining local and international interventions to minimize the risks that this trade poses to global health and primate conservation. While exporting introduced, potentially invasive, primate populations may not have the same conservation implications as trade in declining natural populations, the risks of disease transmission from transporting and housing primates in close contact with humans remain, as do the welfare concerns with trapping and housing methods. Current methods for safeguarding human populations from the spread of zoonotic diseases from the primate trade are insufficient, with many primates still arriving in importing countries and even exiting quarantine while harbouring infectious diseases. Increased internet access has shifted the way in which primates are traded both locally and internationally, increasing the demand for primate pets. Local NGOs play a critical role in tackling the conservation concerns of trade in wild-caught primate, because they have valuable access to local knowledge and governments. While many primate species are affected by this trade, a few genera—namely Macaca , Callithrix , and Chlorocebus —are disproportionately affected, with regional differences in methods of sourcing animals for the trade and purposes for which they are traded. Lack of transparency and discrepancies in reporting between countries (Kolby & Reaser, 2024 ; Fig. 2 ) highlight the need for the inclusion of multiple sources of information when interrogating the primate trade. While these are not an exhaustive list of concerns, they highlight the diversity of issues faced by conservationists and organisations tackling this trade on local and international scales.

Solutions within the primate trade

While suitability for research purposes may be difficult to define, the use of primates for biomedical research and the global trade in primates in general threatens the survival of free-ranging primate populations, and the health of primate ecosystems where the removal of primate species can have detrimental knock-on effects on other species and local human communities (Estrada et al ., 2017 ; 2022 ; Nijman et al ., 2017 ; Fernández et al ., 2022 ). Furthermore, because of the close phylogenetic relatedness between humans and other primates, the live animal trade also creates conditions in which bidirectional zoonotic disease transmission may occur between humans and other primates, threatening the health of both human and nonhuman populations. We suggest some possible solutions to the issues discussed in this paper.

Given the extreme levels of habitat destruction and fragmentation across their natural ranges, the ever-expanding use of specific species (such as Callithrix jacchus and Macaca fascicularis ) in biomedical research, and the ongoing wild primate population declines, we recommend a moratorium on the capture and trade in wild-caught primates and ask that the biomedical research community work closely and share resources with the conservation community to protect and restore primate populations and their habitats. We advocate that up to 1–5% of all grants for primate biomedical experimentation be used for conservation for the study species. It is only by growing the free-ranging populations and protecting their natural habitats that we can ensure that primate species will survive past the end of this century (Estrada et al ., 2017 ). We encourage improved overall transparency in the trade and in documenting the use of any wild-caught primates for breeding center populations. Furthermore, adopting alternative research methods that do not require the use or trade in wild-caught primates and moving toward methods that minimize or eliminate the use of primates altogether will reduce the health, welfare, and conservation concerns associated with all primate trade.

We recommend that even where removal of primates from free-ranging populations does not lead to substantial population decline in native populations, consideration should still be given to the public health risks associated with primate trade and the welfare of the captured individuals. While removal of introduced, “pest” populations has been seen as a possible solution, the sustainability of these alternatives as “long-term” solutions is unclear. Furthermore, the perceived local over-abundance of these introduced populations may skew the global perceptions of the impact the trade has on some globally threatened species. For example, while long-tailed macaques are seen as abundant in Mauritius (Case Study 1 ), continued trade of wild-caught individuals puts them at risk of extinction in parts of Southeast Asia (Hansen et al ., 2021 ). We ask for an international moratorium on the use of wild-caught primates due to immense risks to the species traded, the humans in the trade, and the local ecosystems and communities from where they are removed. We further recommend reading the two recent statements from the International Primatological Society and the IUCN Species Survival Commission Primate Specialist Group, Section on Human-Primate Interactions on the use of wild-caught primates in biomedical and pharmaceutical research (IPS, 2022 ; IUCN SSC PSG SHPI, 2023 ).

Outstanding Questions

A major part of the trade in non-human primates is the trade in specimens for pharmaceutical (included under the purpose code T - Commercial) and biomedical (purpose code M - Medical and S - Scientific) use, including blood, tissue, and other body parts. This often results in the extended or permanent removal of individuals from their populations (as described in the 2022 International Primate Society’s policy on the capture of free-ranging primates for biomedical research (IPS, 2022 )). More than 700,000 Macaca fascicularis specimens were traded between 2008–2019 (Hansen et al ., 2022a , 2022b ). The nature of the trade in what is defined as “specimens” is difficult to decipher, and it goes largely unnoticed as most importers order specimens through subcontractors (Hansen personal observation, 2021). Specimens in the CITES Trade Database can be listed in milliliters, liters, grams, pieces etc. It is therefore difficult to know the number of individual primates needed for these specimens. Reporting of exports of noninvasively collected biological samples (e.g., hair, urine, and faeces collected from free-ranging primates) from CITES-listed species also varies among countries, with some requiring CITES export permits, while others do not, leading to further inconsistencies. In addition, some source and purpose codes provided by CITES are open to interpretation. For example, it is unclear which purpose category best captures the primates traded as pets. Exporters may interpret these codes and categories differently leading to discrepancies between export numbers in the categories when the source and purpose of primates are reported, which may not be a legal question, but it does make it difficult to interpret and understand the trade.

From traumatizing capture and transport methods to barren and/or solidary housing conditions, the welfare of primates in the trade is a concern at every level of the industry (Franklin, 2024). Capturing methods often indiscriminately separate closely bonded individuals and cause high levels of stress and injury; transport involves long (sometimes exceeding 70 hours) periods in which individuals are typically confined in isolation and exposed to a range of fear-inducing stimuli, from loud noises to turbulence. Little knowledge about the needs of each species and lack of national legislation to control housing standards means that many primates are kept in inadequate husbandry standards (Prescott & Jennings, 2004 ). Indeed, one report found that more than 28% of Nycticebus coucang (greater slow loris, including all infants) confiscated from illegal trade routes died within 6 months, mostly from traumatic injuries (Fuller et al ., 2018 ). More than 25% of survivors also exhibited abnormal behavior associated with heightened stress or trauma (Fuller et al ., 2018 ). While a thorough discussion of the welfare implications of the primate trade was beyond the scope of this paper, the welfare and wellbeing of primates within the primate trade is a major concern that should be taken into consideration for policy making.

Conclusions

Our case studies show that some primate populations (such as those introduced to islands) are disproportionately affected by the global primate trade and highlight risks of disease transmission, implications from the rise of online markets, and the need for conservation strategies to be tailored to each region and species. While the exports reported to CITES are primarily of captive-bred individuals, individuals are more likely to be reported as “wild-caught” when traded out of the American tropics and Africa (e.g., from introduced island populations). These reports are likely an underestimate of the true number of wild-caught primates traded, because it often is illegal to capture free-ranging primates in their range counties (Covey & McGraw, 2014 ; Shanee et al ., 2017 ). Furthermore, in some countries, primates are caught illegally and traded under counterfeit certificates as captive-bred (Pasha, 2023 ; Weston, 2023 ; The Nation Thailand, 2023 ; Warne et al ., 2023 ). The case studies addressed in this paper did not consider the unknown numbers of primates traded domestically. While these numbers are difficult to track, domestic trade also threatens free-ranging populations and often is unregulated (Hicks et al ., 2010 ; Hansen et al ., 2021 ). Given the impending primate extinction crisis (Estrada et al ., 2017 , 2022 ), efforts should be made to monitor and combat this trade where it endangers wild primates. Nevertheless, large-scale, international strategies may be required to tackle the growing online trade and the attendant risk of disease transmission, as part of the One Health approach.

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Acknowledgments

The authors are grateful to all the institutions, organisations, and especially local communities that have supported our research for the past many years. GB thanks Dr. Catherine Hobaiter for her advice and support. PAG wishes to acknowledge Chrissie, Sara, Jenni, and Dax for inspiring me to focus my efforts on primate conservation. MFH and DRKN are grateful to Animal Protection Denmark and MFH to the Carlsberg Foundation (grant number CF21-0473). AMM thanks the Whitley Fund for Nature, The Rufford Small Grants, The International Primate Protection League, and Mr. Martin Stanley for their long-term financial support toward night monkey conservation.

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The Long-Tailed Macaque Project, Sorø, Denmark

Daniel R. K. Nielsen & Malene F. Hansen

Department of Anthropology, Program in Ecology, Evolution, and Conservation Biology, University of Illinois, Urbana, IL , USA

Paul A. Garber

International Centre of Biodiversity and Primate Conservation, Dali University, Dali, Yunnan, China

Technological Primates Research Group, Max Planck Institute, Leipzig, Germany

People for the Ethical Treatment of Animals, Norfolk, VA, USA

Lisa Jones-Engel

Fundacion Entropika, Calle 18, #7B-23, Leticia, Amazonas, Colombia

Angela M. Maldonado

Millbrook School, Millbrook, NY, USA

Kerry M. Dore

ROC USA, Concord, NH, USA

Jennifer D. Cramer

Department of Anthropology, Appalachian State University, Boone, NC, USA

Susan Lappan

Malaysian Primatological Society, Penang, Malaysia

Department of Psychology, University of Michigan-Dearborn, Dearborn, MI, USA

Francine Dolins

Philippine Center for Terrestrial & Aquatic Research, Tondo, Manila, Philippines

Emerson Y. Sy

Department of Anthropology, Princeton University, Princeton, NJ, USA

Agustin Fuentes & Malene F. Hansen

Oxford Wildlife Trade Research Group, Oxford Brookes University, Oxford, UK

Vincent Nijman & Malene F. Hansen

Behavioural Ecology Group, University of Copenhagen, Copenhagen, Denmark

Malene F. Hansen

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PAG, FD, SL, MFH, and VN conceived and designed the concept. MG downloaded the data and sorted it. DRKN, VN, and GB analysed and visualised the data. All authors contributed to the writing and reviewing of the manuscript.

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Correspondence to Gal Badihi .

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All data used for this paper were gathered from existing online datasets. This research and data collection adheres to the American Journal of Primatology’s Principles for the Ethical Treatment of Non-Human Primates. We declare no conflicts of interests for any co-authors of this manuscript.

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The data that support the findings of this study are available in CITES Trade Database at https://trade.cites.org/ . These data were derived from the following resources available in the public domain: CITES Trade Database; https://trade.cites.org/ . Reformatted data used to generate figures are available in the following GIThub repository: https://github.com/GalB96/Perspectives-on-the-Global-Primate-Trade .

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The author list includes contributors from the location where parts of the research was conducted, who participated in study conception, study design, data collection, analysis, and/or interpretation of the findings.

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Badge earned for open practices: Open Data and Open Code Badges. Experiment materials and data are available in the repository at https://github.com/GalB96/Perspectives-on-the-Global-Primate-Trade .

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Badihi, G., Nielsen, D.R.K., Garber, P.A. et al. Perspectives on Conservation Impacts of the Global Primate Trade. Int J Primatol (2024). https://doi.org/10.1007/s10764-024-00431-9

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Community involvement in biomedical research conducted in the global health context; what can be done to make it really matter?

Federica fregonese.

Centre de Recherche du CHUM, Montréal, Canada

Community involvement in research has been advocated by researchers, communities, regulatory agencies, and funders with the aim of reinforcing subjects’ protection and improving research efficiency. Community involvement also has the potential to improve dissemination, uptake, and implementation of research findings. The fields of community based participatory research conducted with indigenous populations and of participatory action research offer a large base of experience in community involvement in research. Rules on involving the population affected when conducting research have been established in these fields. But what is the role of community engagement in clinical research and observational studies conducted in biomedical research outside of these specific areas?

Main body of the abstract

More than 20 years ago, in the field of HIV medicine, regulatory bodies and funding agencies (such as the US National Institutes of Health) recommended the constitution of a formal organism, the Community Advisory Board (CAB), as part of the study requirements for HIV trials. More recently, CABs have been adopted and used in other fields of medical research, such as malaria. CABs are not without limitations, however, and there is little research on the effectiveness of their use in achieving community protection and participation. Nevertheless, CABs could be a model to import into clinical trials and observational research where no alternative model of community representation is currently being used.

Conclusions

Allocating more resources to training and shifting more power to community representatives could be part of the solution to current CAB limitations. However, for researchers to be able to apply these recommendations on community involvement, certain conditions need to be met. In particular, funding agencies need to recognize the human and financial resources required for serious community involvement, and the academic environment needs to take community involvement into account when appraising, mentoring , and training researchers.

After my studies and training in clinical medicine, my first experience in research was with an international research unit conducting a clinical trial on HIV prevention. As researchers, we were asked by the funding agency to institute and meet regularly with a community advisory board (CAB). Putting together and working with this body of community representation was a new challenge for researchers involved in the study. First, close collaboration with the local partners was required to identify community members who could serve on the board. Then, the interaction between the two worlds—scientists from the North and community members from the South, speaking “different languages” in so many ways—was not always easy or immediate. But with the passage of time, the two bodies became more accustomed to each other. Researchers learned to listen to the CAB’s suggestions and comments on their work. They also benefited from the CAB’s help in finalizing tools such as the consent form and in disseminating information about the study, which resulted in more efficient recruitment.

Later, continuing my research work in other fields of global health—quite different from the world of HIV clinical trials—I was confronted with the fact that organized community involvement was not formally required for observational or other interventional biomedical research.

The CAB system, which at times, and for different reasons, may be seen as an imperfect way to create a partnership between researchers and the community, seemed a better solution for informing and giving a voice to the community affected by the research, as compared to there being no formal system at all.

In this paper, inspired by this reflection, my aim is to briefly describe the ethical needs for community involvement in any type of public health research, to explore the gap between those needs and the tools available to researchers to fill them, and to suggest possible solutions to meet these needs.

Introduction

An extensive literature underscores the need for communities to be involved in research [ 1 , 2 ], arguing that a “community” dimension should be considered along with the “individual” one in human subject protection in research [ 2 – 5 ]. Building upon the experience of research in aboriginal communities, community based participatory research (CBPR) [ 2 , 6 , 7 ] is “a collaborative research approach that is designed to ensure and establish structures for participation by communities affected by the issue being studied, representatives of organizations, and researchers in all aspects of the research process to improve health and well-being through taking action, including social change” [ 8 ]. CBPR advocates equal partnership between researchers and community.

Similarly, in participatory action research (PAR), communities take action to improve their own health and become “owners” of the research process. Through power sharing and active participation of research subjects, PAR focuses on research that enables actions for change [ 9 ].

While CBPR and PAR have been adopted in several areas of research, they do not apply to all types of studies, and not all health (including public health) research is conducted as CBPR [ 5 ] or PAR. Nevertheless, in this paper, I argue that biomedical research in public health areas, developed on any specific disease, could—and should—involve communities affected by the disease under investigation. This is especially the case in the field of global health, where researchers do not belong to the populations under study.

Possible solutions described here are taken from the example of HIV medicine, where activism has advanced the agenda of community involvement as a way to advocate for relevant research and ensure strong vigilance for the safety of participating subjects.

The target audience for this paper is the community of researchers in biology, medicine, and epidemiology who study a particular disease or health risk, conducting both interventional and observational research—whether longitudinal, as in cohort studies, or cross-sectional, as in repeated surveys.

Relationships between communities and research take different forms, ranging from community consultation in specific stages of the research, to community representation during the whole research process, and even to a long-term and more complex partnership. Different types of community involvement could be appropriate in different situations; for example, informal consultations could be sufficient in some studies, but in others, especially if more vulnerable populations are affected, there could be cause for more formal consultation or partnership [ 10 ].

This paper is not a intended to be a comprehensive analysis of all possible forms of community involvement in research, but rather a reflection on why and how community involvement should be considered in fields of biomedical research where participatory research is not routine practice. For the purpose of this paper, the term “community involvement” is used to indicate different forms of community consultation and representation in research.

In summary, in this article, I focus on why community involvement should be a requirement in the fields of biomedical research in public health and global health, what tools are available to researchers for involving communities in studies not conducted in a CBPR or PAR context, the limitations of these currently available tools, and ideas to overcome those limitations.

Part I: Arguments for community involvement in public health research

Community involvement in research can be advocated from different perspectives. There are three main arguments, discussed below, to support the need for community involvement, all of which can apply to different fields of public health research.

First, informing and consulting members of the broader community on the ongoing research is seen as an additional protection for ethical conduct of the research besides that provided by ethics committee approvals and informed consent [ 3 , 5 ]. Communities can act as gatekeepers [ 11 ] for the principles of respect for persons, beneficence, and justice, as affirmed by the Belmont report [ 12 ], extending their meaning to the people affected by the research, even if they are not research participants. For example, they can: 1) judge the appropriateness and relevance of the research topic for the host community; 2) assess whether the research methods correctly reflect the standard of care; 3) help ensure that the benefits are shared by the community to which the subjects belong; 4) support activities of the local IRB; and 5) identify and manage non-obvious risks [ 13 – 15 ].

Lack of community involvement could result in higher risks of non-respect for the populations living in the research area, greater potential for overlooking important consequences of the research, and limited uptake of results that are not culturally acceptable. The interruption of trials in some of the sites of the study on tenofovir pre-exposure prophylaxis (PREP) [ 16 ] and the poor acceptability of interventions proposed after study completion [ 17 ] are just two examples of how things can go wrong when communities are not engaged in research.

Second, community involvement has the potential to increase study efficiency in several steps. The better informed a community is about a study, the easier it will be to recruit subjects. Having a venue where the community can discuss and be regularly updated on the study’s progress helps with study completion, as it decreases the likelihood of interruptions due to community protests. Once the study is completed, such involvement can also improve results uptake, if results are disseminated by community members. All of these are effective approaches to avoid wasting resources and encourage the use of research results.

Third, involving the community in the research is one way to build mutual trust with the population and to show respect to all affected by the research, beyond the study participants. King argues that “listening, acknowledging and being responsive” is an act of respect on the part of the researcher towards the community [ 15 ]. In recent experience in Zambia, for instance, the use of CABs has been reported as a way to build not only a link with the community, but also a trusting relationship [ 18 ].

In global health research, communities and researchers often are from different cultural backgrounds and countries. They may not only speak different languages, but also have different beliefs and cultural values. This makes it even more difficult for researchers to know and address all the possible implications of their research for the affected populations. Because of this, community participation is an important asset. In many global health settings, there is also the need to extend protection beyond individuals to encompass the community at large [ 19 ]. As well, in some settings, researchers must obtain the consent of the community before seeking the consent of individual participants. Furthermore, in global health, the research often pertains to vulnerable populations, such as pregnant women and children, as they are the ones bearing the burden of many diseases of high prevalence in the South.

On the other hand, counterarguments have been raised to illustrate possible adverse consequences of involving communities in research. One is that vulnerable communities could be even more stigmatized when targeted by research [ 20 ]. This is certainly true for genetic research [ 21 ], where a community could be identified as being at higher risk of some diseases and become stigmatized for it. The research might also discredit some common beliefs held by the community members and with which they strongly identify. In other forms of biomedical research, aside from genetics, the risk might be lower. Still, the disclosure of a study’s results, or even just a researcher’s interest in targeting a community for a specific health issue, could result in its stigmatization by enhancing the idea that this community is more vulnerable or susceptible, or sicker, than others. More commonly, however, in public health and global health research, communities under study are already aware of their health issues and risks and would see the study more as providing an opportunity to get better health care than as posing a risk of stigmatization.

Another argument against community involvement would be that it takes time and resources, which could delay the production of research results, with negative implications for improvement of that same community’s health. At the same time, even the recommendations of well-conducted biomedical research can remain unimplemented if communities that should benefit from the results are not primed to receive and adopt them.

Lastly, it may be argued that not all researchers are necessarily equipped to take on the challenges of establishing community engagement, which may require training and specialized resources. For example, in one successful experience in a malaria vaccine trial [ 22 ], a medical anthropologist was involved in conducting the initial assessment, to establish an effective community consultation. However, not all research projects would be able to include this kind of expertise.

While recognizing that any intervention can have unintended consequences, and that realistically not all biomedical researchers would be able to establish long-lasting partnerships with communities, I nevertheless think research could benefit from a paradigm shift in which community involvement is seen as a way to achieve higher research quality.

Part II: Tools currently available to researchers to promote community involvement and their limitations

Ethics regulatory bodies are increasingly recommending that researchers include a community involvement component in their research, and both public and private funding entities are increasingly requiring community involvement as part of the research plan. In HIV medicine, the US National Institutes of Health (NIH) has supported community involvement in trials both with specific support for community involvement activities from the Division of AIDS and with a specific funding opportunity, the Clinical and Translational Science Award (CTSA).

From a regulatory standpoint, UNAIDS has developed specific guidance for involving communities in HIV vaccine trials [ 23 ]. Similarly, there is explicit mention of community involvement in ethical guidance from research organizations such as the HIV Prevention Trials Network (HPTN) [ 24 ] and in the H3Africa Guidelines for Community Engagement [ 25 ].

Second, there is a push to study the role and efficacy of community involvement in different types of research. Besides the NIH-funded Clinical and Translational Research Program, in the framework of the Grand Challenges in Global Health (GCGH), the Bill & Melinda Gates Foundation (BMGF) [ 26 ] dedicated a grant to studying the ethical, social, and cultural issues associated with the research funded by the GCGH initiative [ 17 ]. That BMGF program has taken on, among other duties, the study of community involvement in GCGH studies [ 14 ]. Similarly, the Wellcome Trust has dedicated funding to examine community involvement in global health research [ 27 ]. In the context of global health research, this trend is aligned with a shift towards a more equal power sharing in North–South partnerships and with a larger leadership role being played by researchers in the South.

Third, in the field of HIV research, unique community participation and activism, especially regarding antiretroviral treatment and its accessibility, led to the first institution of community advisory boards (CABs) (1989) and of the Community Constituency Group at the National Institute of Allergy and Infectious Diseases (1993) (NIAID) [ 28 , 29 ].

Community representation in the trials, with the presence of CABs, has been required by NIH since the late 1980s and early 1990s. The institution and involvement of CABs have since expanded, and they have been used in other areas of medical research, such as malaria research [ 1 , 18 , 30 ].

These initiatives and funding opportunities represent a trend of increasing attention being paid to contributions the community can make to research, as well as its right to be informed. Nevertheless, there is concern that this is not enough of a commitment to build meaningful community links. Authors have noticed that resources for this are limited and are often the first to be sacrificed if there is not enough money for the study [ 31 ]. In addition, there is not really a system in place to verify whether community involvement actually occurs in a study (and how), and the literature on evaluations of CABs’ functioning is not yet well established [ 5 , 29 , 32 ], nor is there agreement on how to study their efficiency [ 28 ]. Finding measurable universal outcomes that could be considered proxies of efficacy in community involvement is not straightforward, as the ethical objective may be research-specific and vary among the different parties involved in the research. Even when developed, instructions for evaluating community involvement focus more on the process of guaranteeing community involvement and on the level of involvement CABs should have in research. There is no instruction (either uniform or adapted to local contexts) regarding what indicators should be used in addressing ethical issues raised by the use of CABs or regarding how they might best be used to improve post-trial benefit and reduce potential community exploitation [ 13 , 33 , 34 ].

Furthermore, as tools for guaranteeing community involvement in a study, CABs have several limitations.

First, defining what constitutes the “community” is not always straightforward [ 2 , 7 , 35 ]. Definitions differ (Tindana et al. 2007 [ 14 ] versus Strauss et al. 2001 [ 31 ], for example) and, to some extent, are context specific. In a study involving people from different countries, affected by different conditions, and participating in different types of studies, MacQueen and colleagues [ 35 ] concluded that diversity, geographical location, social ties, shared perspectives, and engagement in joint actions were the characteristics that best described a community. As reported by participants of the Community Engagement and Consent Workshop held in Kilifi, Kenya, in 2011, community is often externally defined by the researcher based on the disease and/or the condition(s) studied and the geographical boundaries of the study [ 36 ]. As such, the community for a clinical trial on HIV prevention will likely be different from the community for a population-based survey on malaria prevention. If we accept the definition of community as the group of people who share the same risk (and potential benefit) of the research, then the method used in the research (clinical intervention versus observations, for example), as well as the research area (epidemiological research on risk factors, clinical research on treatment, health systems research on strategies, etc.) and the specific topic (malaria, HIV, tuberculosis, poverty and health utilization, diarrheal disease, etc.) would imply different definitions of “community”.

Second, even when there is agreement on the definition of “community” for a given study, the challenge remains of identifying its representatives. Guidelines recommending the institution of CABs do not specify any formal methodology for their composition [ 28 ]. Members of CABs can be drawn from either the broad community or a specific population [ 28 , 29 ]. The first model, a broad community CAB, tends to be less expensive to institute and can be involved in a variety of studies [ 1 , 28 ]. It may be preferred by researchers as a more affordable option, since it relies on members of the community who already have a leadership role, some of whom also have specific knowledge and are, because of their previous involvement in the community, easier to organize [ 29 ]. In some cases, members of this CAB model are elected leaders and therefore already invested by the larger community with the mandate to represent it [ 1 ]. In population-specific CABs, on the other hand, members are invited and appointed by the researchers [ 30 ]. In this case, the researcher has the difficult task of finding people who can actually represent the community, without perpetuating the marginalization of the most vulnerable members of the community, who may inadvertently be excluded simply because they are not easy to find, nor part of the dominant ethnic or religious group, or for other reasons.

Third, several other limitations to CABs have been raised. These include: lack of clarity regarding who is responsible for identifying and recruiting members who would be considered by the community as suitable representatives and who can work effectively with the researchers; the need for increased awareness in the population regarding the research process, the purpose of the study, and the possibility of having a community voice at the table; the communications challenges (cultural and language barriers are often present between researchers and community members , especially in global health, where researchers and communities are from different countries); the social hierarchy and different social statuses within the CAB that can make it difficult for everyone to have a voice; the volunteer nature of community members, with the limitations this can present in terms of time and commitment and in member selection [ 13 ]; and the relative independence of CABs from researchers (particularly in cases where researchers are also the main providers of scarce benefits such as drugs, tests, or services, as may be the case especially for marginalized populations or for neglected diseases) [ 1 , 13 , 30 , 33 ]. This is particularly true in global health, where the power imbalance between researchers and general population is even more marked. For example, often researchers would be able to provide medical care and devices that are not normally available to the general population with the usual standard of care. This expectation complicates the relationship between community representatives and researchers, as calls for access to better health care besides what is provided to research participants maybe become part of the negotiations [ 10 , 37 ].

Finally, both scientists and CAB members have raised the issues of insufficient power being given to community representatives and of their actions being largely limited to advising and giving feedback to researchers [ 1 , 13 , 30 ]. A power shift is needed in which CABs can assume a more intrinsic role—for instance, participating in setting the study agenda with researchers and evaluating the appropriateness and relative priority of future studies—rather than having a purely instrumental role, such as providing guidance in the wording of the informed consent form or helping with recruitment and enrolment [ 13 , 33 , 36 ]. This shift of power would also imply a shift in paradigm, from individual-only protection to community protection [ 3 , 5 ].

Part III: Potential solutions

Current limitations in applying community involvement in research could be overcome in different ways.

Some possible solutions are discussed here that could apply to researchers in the field of medicine, mainly with a biomedical background, working on research projects focused on one specific disease, either with interventions or observational research.

On one hand, building on the trend of adopting the CAB model outside HIV medicine, researchers in such areas as malaria, TB, maternal and child health, etc., could be guided and supported in using a similar form of community representation in clinical trials and observational research. On the other hand, a supportive system needs to be in place for researchers to be able to commit time and energy to this issue. Finally, sensitization and specific training for researchers, academics and funders, as well as awareness-raising activities among the general public, could help in shifting the paradigm from protection for participating individuals to protection (and involvement) for the whole affected community [ 3 , 5 ].

Expanding CAB use and tackling current CAB limitations

Despite the limitations discussed above, CABs definitely constitute an effort to include the community at different stages of a clinical trial. Could they be used widely in clinical trials and observational research? Certainly the activism in populations affected by HIV played a strong role in the constitution of CABs in HIV medicine research. Also, one could argue it would be easier (for both communities and researchers) to incorporate community involvement into clinical trials directly linked to the development and use of new drugs than into other kinds of epidemiological studies in which the link to the impact on population health improvement is not always well known or understood by the general public. Moreover, the leading HIV advocacy group, PLWHA (People Living With HIV/AIDS), is a community defined by the disease that affects them, whereas it may be more challenging to elicit the sense of group belonging in the case of other conditions—and even more so when the population under study is not defined in terms of a disease, but of a risk factor. As well, not all sciences may feel that close community involvement is needed, as not all study topics are perceived as sensitive to populations. In particular, observational research is often perceived as potentially less harmful and thus as requiring a lesser level of human subject protection.

In fact, however, even observational research may have harmful consequences. For example, communicating research results to participating individuals can cause distress; healthcare can be withheld if results are not communicated to participants, or if action is not taken upon them; and, lastly, wide dissemination of results could be stigmatizing for the community. This indicates a clear need for a community safeguard system in observational studies, as well.

If CABs are adopted, then their limitations and the possible perverse consequences of their use [ 13 , 28 , 33 ] need to be addressed. To increase the power of CABs and ensure they play an intrinsic role, for example, Pratt and colleagues suggest three core elements needed to avoid exploitation of the community in which the study takes place [ 13 ]. First, procedural requirements must be developed (and respected) for selecting CAB members in ways that ensure appropriate diversity, and the CAB must have an explicit charter giving it the responsibility for preventing exploitation. Second, CAB members need to have sufficient knowledge about how research is conducted, the topic of the study, and the risk of exploitation. Third, CAB members must be given the power to take action if exploitation is recognized, whether by having a direct communication link between the CAB and the ethics committee or by making researchers accountable, in the ethics regulation process, for following CAB advice or justifying why it was not followed [ 13 ]. The effectiveness of community involvement is quite complex to evaluate, and assessing it has proven challenging even for groups who have successfully established long-lasting partnerships [ 37 ]; research is therefore needed to inform on the most effective methods [ 33 ]. Even so, integrating requirements for evaluation into guidelines for CAB use could provide an additional incentive to organize some form of community involvement and to assess whether it makes a difference in the research, with a view towards establishing community involvement in research as the norm.

Making the CABs’ role more central to the research process would require a clear framework and accountability systems, as well as an extended investment in capacity-building in CAB members. It may take a long time, for instance, to develop knowledge on the topic being studied. This is true whether we are establishing a long-term, more open-ended CAB, where members would need continuous education on different health topics, or study-specific CABs, where the challenge would be to train new members for each different study.

In any case, such a commitment to entrust CABs with a more relevant role would require: 1) devoting time and resources to identifying possible members to maximize representation (in the absence of the possibility of election) while reducing power imbalances and avoiding over-representation of some parts of the society; 2) investing time and resources in CAB training and capacity-building, with an honest bi-directional flow of information and learning (i.e., CAB members learning about the disease topic, and researchers learning about societal issues, cultural impacts of the research in that context, etc.); and 3) the willingness to give CABs the mandate to handle agendas and to respond in concrete ways to any cases of injustice raised by the study, and to grant autonomy to the members. This process requires mutual trust and a good level of frequent communication, both of which are slow and labour-intensive to develop. These traits are especially important because CABs need to be dynamic bodies that can adapt to changes in both the community and research needs. For example, whenever there is a new study involving a different vulnerable population, CAB membership will have to be reviewed to ensure appropriate representation of the new group.

Beside CABs, other forms of community representation have also been tried in global health projects. One interesting example has been developed at the Kenya Medical Research Institute (KEMRI) in Kilifi, Kenya, where members drawn from the community-based organizations (CBO) network have served over the years as KEMRI community representatives [ 10 , 37 ]. This experience illustrates how, in cases of long-standing research infrastructure within a North–South collaboration, it is both possible and beneficial to establish a multifaceted partnership in which community members can participate in different steps of the research projects. Although labour intensive, the partnership nurtured in the KEMRI community representative project has proven quite effective for a research team conducting several studies in the same community [ 10 , 37 ]. This model is not without limitations; for example, there may be issues in how CBO network members serve as community representatives or relay to the community the information received from and discussed with researchers. Even so, the model in an interesting example of alternatives to CABs for community representation and researcher–community interaction.

For both CABs and other bodies of community representatives, timing is also important in shaping the type of collaboration. If their involvement is sought too late in the process, the community may perceive it as simple consultation with no real commitment to power sharing. If done earlier, it may produce more of a dialogue, which is important to inform research needs and feasibility, but still does not necessarily include a more complex form of partnership, characterized by longer collaboration (established before the study and continued to its completion, results dissemination, and possibly results uptake and implementation). Some of these timings would also require different levels of commitment and resources on the part of researchers, such as the possibility of having access to sufficient funding even before starting the study.

Conditions that would need to be in place

Researchers need time, skills, human resources, and funding to be able to build the relationships necessary for meaningful community involvement [ 10 ].

However, neither the current funding system nor the academic performance evaluation system seem adequate for these kinds of needs. For example, many authors have suggested that the role of community representatives is more relevant if initiated in the earlier phases of a trial [ 3 , 15 , 18 ]. This means the community’s involvement should start at the beginning of the study, before any decisions have been taken on the protocol and study materials. This would be possible if there were funding to prepare the protocol, in the first place, well before being able to submit a final protocol for funding the study itself. This would require a shift in funding agencies’ rules to make funding available before the protocol is submitted.

Furthermore, it would take a supportive academic environment for researchers to be able to devote sufficient time to developing the relationships needed for community involvement. This would mean, for example, redesigning researchers’ performance appraisal systems to take into account collaborations and community involvement as an achievement, rather than merely as a modality used in the study. Accepting such a power shift from the early stages of protocol development all the way to results dissemination could have an impact, for example, on the number and the timing of publications, which are currently an essential part of the evaluation of researchers’ performance in academic institutions. The time and energy the researcher puts into liaising with the community should be considered in career evaluation, counting as a research “result” even if it is only one part of the process leading to the publication of results. Certainly this, as with other methods, would have some limitations, but it could be a way to achieve a more mature community involvement, without leaving it all to researchers’ good intentions.

Training, awareness, and evaluation

Community awareness about how research is conducted and the community’s role in it could be raised in many different ways and build on known forms of community consultations (media, open public forums, presentations at public meetings of social or religious groups, etc.) [ 38 ]. Training in community involvement rationales, tools, potential barriers, and possible (especially perverse) consequences could become standard for students in all research programs, whether medical research students, epidemiologists, or clinical trialists who are not currently exposed to the existing body of knowledge on CBPR in indigenous populations or who do not work in PAR. It could, for example, become one of the components of good clinical practice for clinical trials, no matter the field studied.

Most importantly, training should be provided early, before researchers have become set in their specialized fields, as this is a common platform of skills needed for different fields of biomedical research, in which researchers are not necessarily equipped in the areas of anthropology, communications, or psychology.

As in any other form of partnership, interpersonal relationships play an important role; even with specific training, not all researchers are suited for or interested in engaging in all the forms of relationship that community participation may require. Different solutions may be appropriate for different people, and some might be a better fit for one specific type of research than for another. For example, a short survey on the community prevalence of a specific non-communicable disease would likely not call for the same community involvement as several longitudinal intervention studies on prevention or treatment of a communicable disease in a vulnerable community in the same population. Far from proposing a comprehensive solution for all researchers and research types, I would argue that, in cases where engaging the population involves complex activities for which the researcher’s training and skills are not suited, working in multidisciplinary teams could be part of the solution, as in the example of the medical anthropologist attached to the malaria trial team [ 22 ]. Again, funding and academic environments need to be conducive to this kind of collaboration.

Finally, when training, funding, and recognition are provided for activities aimed at engaging communities, there would need to be in place a system to assess researchers’ practice and effectiveness in working with communities. This would include developing tools to assess the quality of community involvement at different points in the research process. While this evaluation should be kept simple, so as not to overload researchers, academic institutions, and funding bodies with yet more layers of bureaucratic duties, it would underscore the importance of community involvement and could support ongoing reflection and reassessment of the methods and process used.

In conclusion, agreeing that there is a strong rationale for community involvement in different areas of public health and global health biomedical research is not enough; we also need to put in place conditions that will allow and motivate researchers to actually work towards it, without being penalized in their academic achievements. Expanding the use of a formal organ of community representation, such as the community advisory board, in different fields of epidemiology, observational biomedical research, and clinical trials, as well as increasing researchers’ accountability to these organisms, could be a way of increasing both the voice of the community and research success.

Acknowledgements

The author wishes to acknowledge the fellows and supervisors of the 2016 GHR-CAPS Winter School, who contributed to improving the paper through meaningful discussions; Dr. Alberto Velazquez, and academics and doctors of Las Tunas Primary Health Care Services and University Medical School, who enriched the 2016 Winter School with insights into public health and global health challenges and solutions; Winter School coordinators Cassi Bergeron-Caron and Thérèse Yéro Adamou for assistance; my friend and colleague Jeannie Intira Collins for inspiring exchanges over the years on the need for and benefits of community involvement in biomedical research.

Publication of this manuscript is sponsored the Global Health Research Capacity Strengthening Program (GHR-CAPS) funded by the Canadian Institutes of Health Research (CIHR) (Strategic Training Initiative in Health Research (Grant # 96123)). The authors also thank the Quebec Population Health Research Network (QPHRN) for its contribution to the financing of this publication. The author has been the recipient in previous years of a scholarship from the Global Health Research Capacity Strengthening (GHR-CAPS) program funded by the Canadian Institutes of Health Research.

About this supplement

This article has been published as part of BMC Medical Ethics Volume 19 Supplement 1, 2018: Ethics and Global Health. The full contents of the supplement are available online at https://bmcmedethics.biomedcentral.com/articles/supplements/volume-19-supplement-1 .

Abbreviations

Authors’ contributions.

FF conceived, designed and wrote the manuscript and approved its final version.

Ethics approval and consent to participate

Not applicable.

Competing interests

The author declares that he/she has no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

AMPATH Kenya: IU and partners create visionary global health model

Indiana University formed a partnership with a new medical school in Kenya nearly 35 years ago and created a model of global health collaboration that was visionary in its emphasis on equitable partnerships and long-term sustainability.

The results of the Academic Model Providing Access to Healthcare, or AMPATH , partnership that “leads with care” include the creation of one of Africa’s first, largest and most comprehensive HIV care and control programs supported by the United States Agency for International Development; sub-Saharan Africa’s first transitional home for people with mental health challenges ; and Kenya’s first medical fellowships in pediatric oncology and maternal-fetal medicine .

A woman in a white coat holds a baby

“When the IU School of Medicine formed a partnership with Moi University School of Medicine in Kenya in 1989, the trajectory of both institutions changed for the better,” IU School of Medicine Dean Jay L. Hess said. “The AMPATH partnership has provided care for more than 250,000 people living with HIV and has hosted thousands of trainees and conducted research that has changed lives, not just in Kenya and Indiana, but around the world.”

AMPATH now includes a global network of 15 academic health centers led by IU working in partnership with Moi University and Moi Teaching and Referral Hospital in western Kenya. The success of the innovative global health model in Kenya has led to recent partnerships with additional academic health centers in Ghana, Nepal and Mexico.

“Together we have improved access to quality health services for people in western Kenya, and in doing so have saved many, many lives,” said Dr. Adrian Gardner , director of the IU Center for Global Health Equity and executive director of the AMPATH Consortium. “Together we have taught, mentored and inspired the next generation of healers from multiple continents. And together we have produced impactful research that informs Kenyan and global health policy.

“But this partnership has allowed us to do so much more. We have laughed, celebrated and dreamed together; learned from each other; struggled together; and, at times, bickered with each other, cried together, mourned together and supported each other through good and challenging times.”

A foundation of educational exchange

The four IU physicians who initiated the partnership in Kenya were looking in 1988 for an academic partner in a low- or middle-income country that would provide IU School of Medicine students with the same life-changing and career-inspiring experience they each had earlier in their careers. They insisted that the partnership provide bidirectional opportunities for Kenyan medical students and residents to train at IU, and that each IU faculty member living in Kenya work in partnership with a Kenyan colleague to provide care and build a health care system that was responsive to the community’s needs.

A man in a white coat draws blood from a woman

The vision that doctors Joe Mamlin , Robert Einterz , Charles Kelley and Dave Van Reken shared with leadership at Moi University was pioneering for the time and has become a premier model for equitable global health partnerships. More than 1,200 IU learners have had health care experiences in Kenya, and more than 425 Moi University students and residents have trained at IU and other AMPATH Consortium schools. Students and faculty members from IU schools of nursing, public health, liberal arts, law, dentistry and others have participated in various aspects of the partnership throughout the years. These medical exchanges are possible because of donor generosity.

“The IU Center for Global Health Equity prepares learners for their experience, ensures a safe and comfortable living and working environment in Kenya and Indiana, and provides mentorship and support during and after their trip,” said Dr. Debra Litzelman , director of education for the center.

Research on AMPATH’s global health experience shows that the partnership provides medical students and health professional trainees with “a highly impactful, transformative learning experience that fosters the development of global mindedness and community involvements, whether local or global, long after the experience.”

“AMPATH’s 360-degree care model has become a critical aspect of my education,” said Dr. Victoria Sanchez, who received the Brater Scholarship as an IU School of Medicine student and is now a surgery resident at Stanford University. “A goal of mine was to learn about how a global partnership should be structured to optimize ethical operations. I think IU School of Medicine models an excellent bidirectional and sustainable partnership with Moi University through AMPATH.”

Faculty committed to sustainable care system

Several IU School of Medicine departments support full-time faculty in Kenya who teach and mentor Kenyan and IU trainees and provide clinical care at Moi Teaching and Referral Hospital and several local facilities throughout western Kenya.

Joe Mamlin talks with a patient

“It’s simple: We ‘lead with care,’” said professor Sylvester Kimaiyo , chief of party for USAID AMPATH Uzima and AMPATH executive director of care. “Notably this is what sets us apart from other health institutions doing similar work, because it is the needs of the patient that draw us closer. We respond to their needs by setting up sustainable interventions to combat realistic challenges they face every day.”

AMPATH’s partners provide care for a population of more than 24 million people in western Kenya including oncology, child health, adolescent care, women’s health, surgery, anesthesia, antimicrobial resistance, non-communicable diseases including cardiovascular disease and mental illness, and economic empowerment and agriculture.

“With support from the faculty at the IU Simon Comprehensive Cancer Center , the AMPATH oncology program is a leading comprehensive cancer care program in Africa seeing over 1,500 cancer patients per month and providing radiotherapy for over 60 patients per day,” said Distinguished Professor Dr. Pat Loehrer , director of the cancer center’s Center for Global Oncology and Health Equity.

Dr. Brenda Chepkoech was one of six Kenyan registrars, which are equivalent to residents, who traveled to Indianapolis in 2023 as part of the two-way exchange , working at Riley Hospital for Children at IU Health. She hopes to be part of the team setting up a pediatric intensive care unit in Eldoret, Kenya, in the near future.

“I want to be a part of the bridge that connects where we are back home with where Riley is,” she said. “The gap is so big, literally ages apart! I want to contribute to providing options for the children back home who would have survived had they been cared for at Riley.”

In addition to the pediatric intensive care unit, a pediatric cancer center, burn hospital and neurodevelopmental clinic are all under development with support from IU faculty and the AMPATH partnership. Individual donors, corporate and foundation supporters, and grants from the U.S. President’s Emergency Plan for AIDS Relief through USAID, the National Institutes of Health and other agencies have contributed more than $900 million to AMPATH care, training and research efforts over the past three decades.

Research that informs policy

Since the first research collaboration in 1992, AMPATH has invested heavily in infrastructure and training to conduct research to strengthen care systems, quickly respond to health challenges and push for new breakthroughs in health, policy and justice worldwide.

A woman does research in a lab

“AMPATH is known for leading with care, but research has informed a lot of the work we do in care, so it’s a very complementary relationship,” said professor Winstone Nyandiko , AMPATH co-director of research and a pediatrician at Moi Teaching and Referral Hospital.

The AMPATH research program includes more than 20 collaborating institutions and has received $247 million in total research funding since 1998.

“The resulting 1,400 publications in peer-reviewed journals stay true to AMPATH’s ideals by including investigators from Kenya, North America and Europe,” said Dr. Kara Wools-Kaloustian , AMPATH co-director of research, director of research for the IU Center for Global Health Equity and recipient of IU’s John W. Ryan Award for Distinguished Contributions to International Programs and Studies.

Improving Hoosier health

Reciprocal innovation describes the process of high- and low- and middle-income countries working together to continuously innovate solutions to shared health challenges. In Indiana, programs to improve infant and maternal mortality , identify counterfeit medication and improve care for immigrant and refugee communities rely on lessons learned from IU’s longstanding partnership in Kenya.

“Our global health community in Indiana has a deep knowledge base and has worked with talented colleagues around the world to improve health outcomes in communities with incredible challenges,” said Dr. Laura Ruhl , director of reciprocal innovation for the IU Center for Global Health Equity. “When these global health experts join in partnership with people from communities in Indiana facing some of the same challenges, we have the collective power to make real progress toward improved health outcomes.”

Debbie Ungar

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