Biobanking can promote valuable health research that may lead to significant societal benefits. However, collecting, storing and sharing human samples and data for research purposes present numerous ethical challenges. These challenges are exacerbated when the biobanking efforts aim to facilitate research on public health emergencies and include the sharing of samples and data between low/middle-income countries (LMICs) and high-income countries (HICs). In this article, we explore ethical challenges for COVID-19 biobanking, offering examples from two past infectious disease outbreaks in LMICs (...) where biobanking activities contributed to the perpetuation of global inequities. We focus on how the ethical imperative to promote the common good during public health emergencies can conflict with protecting the interests of biobank participants. We discuss how conducting biobank research under a waiver of informed consent during public health emergencies is ethically permissible, provided guidance is in place to prevent biopiracy and exploitation of vulnerable communities. We also highlight the need for biobank collaborations between LMICs and HICs to promote capacity building and benefit sharing. Finally, we offer guidance to promote the ethical oversight of biobanks and biobank research during the COVID-19 pandemic or other future public health emergencies. (shrink)

Questions have been raised over the acceptability of conducting human challenge studies in low and middle income countries. Most of these concerns are based on theoretical considerations and there exists little data on the attitudes of stakeholders in these countries. This study examines the view of researchers and REC members in Thailand regarding the design and conduct of challenge studies in the country. A questionnaire was developed based on ethical frameworks for human challenge studies. The target respondents included those who (...) had experience with health-related research at universities, non-university hospitals, and research institutes. A total of 240 respondents completed the on-line survey. In general, the respondents felt that the ethical issues raised by human challenge studies in LMICS do not differ significantly from those in high income countries, including: scientific rationale, safety, appropriate risks, and robust informed consent process. In contrast, issues that have been described as important for human challenge studies in LMICs were rated as having lower importance, including: a publicly available rationale, national priority, and community engagement. Responses did not vary significantly between researchers in different fields, nor between researchers and REC members. These findings provide an important perspective for assessing existing frameworks for human challenges studies in LMICs. (shrink)

The rapidly expanding universe of information, media, and learning experiences available through digital technology is creating unique opportunities and vulnerabilities for children and adolescents. These issues are particularly salient during the developmental window at the transition from childhood into adolescence. This period of early adolescence is a time of formative social and emotional learning experiences that can shape identity development in both healthy and unhealthy ways. Increasingly, many of these foundational learning experiences are occurring in on-line digital environments. These expanding (...) vulnerabilities and opportunities are being further amplified for young adolescents growing up in low resourced settings around the world. Cultural and contextual factors influence access, use, and appropriation of digital technology. Further, neurobehavioral changes associated with the onset of puberty often coincide with entry into social media and more autonomous use of technology. In low-and-middle-income countries (LMICs), disparities in access, use, and appropriation of digital media can amplify prevailing economic gaps, and compound gender inequalities during early adolescence. In LMICs, adolescents are often the early adopters of mobile technology and social media platforms. While the impact of social media on the well-being, particularly mental health, of young adolescents has been a focus of research in high-income countries (HICs), much less is known about the impacts of social media use on young adolescents in LMICs. In this paper, we review what is known about the interaction between digital media and early adolescent development. We highlight crucial gaps in the evidence in LMICs; and describe some hypotheses and areas for future research to address these compelling issues. (shrink)

Parsa-Parsi _et al_ bring attention to the World Medical Association (WMA) and transparency to its International Code of Medical Ethics (ICoME) revisions. 1 We value their report and the revised ICoME but explain here that the ICoME cannot reflect consensus among all WMA members, or the wider medical profession, given structural and epistemic injustices that restrain low-income and middle-income country (LMIC) physicians from participating in activities such as WMA revisions. Such injustices overlook experiences and contributions of those from LMICs (...) and marginalised groups, hindering their access to and influence within medicine. 2 They also undermine access to information about, and from, the WMA. Recruiting new members from, and better engaging members in, LMICs would strengthen the WMA and its influence across the medical profession, and better elevate environmental sustainability as a biomedical and bioethical concern. This would be beneficial because there is controversy among physicians, bioethicists and... (shrink)

The paper by Lynch et al. raises interesting ethical questions regarding whether and how much SARS-CoV-2 Human Challenge Studies participants should be paid. We appreciate the timely e...

In controlled human infection studies (CHIs), participants are deliberately exposed to infectious agents in order to better understand the mechanism of infection or disease and test therapies or vaccines. While most CHIs have been conducted in high‐income countries, CHIs have recently been expanding into low‐ and middle‐income countries (LMICs). One potential ethical concern about this expansion is the challenge of obtaining the voluntary informed consent of participants, especially those who may not be literate or have limited education. In some CHIs (...) in LMICs, researchers have attempted to address this potential concern by limiting access to literate or educated populations. In this paper, we argue that this practice is unjustified, as it does not increase the chances of obtaining valid informed consent and therefore unfairly excludes illiterate populations and populations with lower education. Instead, we recommend that investigators improve the informed consent process by drawing on existing data on obtaining informed consent in these populations and interventions aimed at improving their understanding. Based on a literature review, we provide concrete suggestions for how to follow this recommendation and ensure that populations with lower literacy or education are given a fair opportunity to protect their rights and interests in the informed consent process. (shrink)

Autism Spectrum Disorder (ASD) is a neurodevelopmental condition characterized by social/communicative difficulties and perseverative behaviours. While research on autism has flourished recently, few studies have been conducted on the disorder in non‐Western contexts. In low‐ and middle‐income countries (LMICs), biomedical research on autism is required to better understand the needs of the population and to develop contextually appropriate interventions. However, autistic individuals are a vulnerable study population and LMICs present with various considerations. While the presentation of autism is heterogeneous, stigma (...) is a common social consequence affecting research. Drawing specifically on the South African context, the ethical intersections of these issues are discussed, along with the limitations of the current informed consent process. Community engagement is recommended as an adjunct to informed consent to ensure that biomedical research is conducted in a more inclusive way. Practical pointers are provided for implementing systematic support for conducting community engagement alongside biomedical research. (shrink)

Infertility is an unpredictable but widespread condition. While high‐income countries grapple with when, or how to cover the costs of assisted reproductive technology (ART), such as in‐vitro fertilisation (IVF), these services are generally only available to wealthy persons at private facilities in low‐ and middle‐income countries (LMICs). Although the principle of non‐interference with normal individual reproductive rights is robust, whether it is also the responsibility of collective society to provide the means (when ART applies) to achieve pregnancy, is controversial. Recently, (...) a low‐cost model was developed at a South African public institution. The target population for this model was “helpless and marginalised, childless couples”, but a new threat has arisen, namely, infertile couples who could conceivably afford private care. In the allocation of this scarce resource, we argue for a prioritarian response that first addresses the worst‐off, in order to even out unequal access imposed by sharp differences in income. (shrink)

Development-oriented funding schemes such as the UK Global Challenges Research Fund (GCRF) have opened up opportunities for collaborations between low-middle income countries (LMICs) and high-income country (HIC) researchers. In particular, funding for medical technology research has seen a rise in previously under-represented disciplines such as physics and engineering. These collaborations have considerable potential to advance healthcare in LMICs, yet can pose challenges experienced to researchers undertaking these collaborations. Key challenges include a lack of tradition of HIC/LMIC collaborations within participating (...) departments, lack of experience with development agendas, designing contextually-appropriate technologies and ensuring long-term viability of research outputs. This paper reflects on these key challenges, using the experiences of the authors on the Open Laboratory Instrumentation (OLI) project as a focalizing lens. This project was a GCRF-funded collaboration between physicists in the UK and engineers in Tanzania to develop an open-source, 3D-printed, fully-automated laboratory microscope. The paper highlights key ethics lessons learnt. (shrink)

Development-oriented funding schemes such as the UK Global Challenges Research Fund (GCRF) have opened up opportunities for collaborations between low-middle income countries (LMICs) and high-income country (HIC) researchers. In particular, funding for medical technology research has seen a rise in previously under-represented disciplines such as physics and engineering. These collaborations have considerable potential to advance healthcare in LMICs, yet can pose challenges experienced to researchers undertaking these collaborations. Key challenges include a lack of tradition of HIC/LMIC collaborations within participating (...) departments, lack of experience with development agendas, designing contextually-appropriate technologies and ensuring long-term viability of research outputs. This paper reflects on these key challenges, using the experiences of the authors on the Open Laboratory Instrumentation (OLI) project as a focalizing lens. This project was a GCRF-funded collaboration between physicists in the UK and engineers in Tanzania to develop an open-source, 3D-printed, fully-automated laboratory microscope. The paper highlights key ethics lessons learnt. (shrink)

Development-oriented funding schemes such as the UK Global Challenges Research Fund (GCRF) have opened up opportunities for collaborations between low-middle income countries (LMICs) and high-income country (HIC) researchers. In particular, funding for medical technology research has seen a rise in previously under-represented disciplines such as physics and engineering. These collaborations have considerable potential to advance healthcare in LMICs, yet can pose challenges experienced to researchers undertaking these collaborations. Key challenges include a lack of tradition of HIC/LMIC collaborations within participating (...) departments, lack of experience with development agendas, designing contextually-appropriate technologies and ensuring long-term viability of research outputs. This paper reflects on these key challenges, using the experiences of the authors on the Open Laboratory Instrumentation (OLI) project as a focalizing lens. This project was a GCRF-funded collaboration between physicists in the UK and engineers in Tanzania to develop an open-source, 3D-printed, fully-automated laboratory microscope. The paper highlights key ethics lessons learnt. (shrink)

A large proportion of the total global burden of disease is caused by emergency medical conditions. Emergency care research is essential to improving emergency medicine but this research can raise some distinctive ethical challenges, especially with regard to (1) standard of care and risk–benefit assessment; (2) blurring of the roles of clinician and researcher; (3) enrolment of populations with intersecting vulnerabilities; (4) fair participant selection; (5) quality of consent; and (6) community engagement. Despite the importance of research to improve emergency (...) care in low-income and middle-income countries (LMICs) and the widely acknowledged ethical challenges, very little has been written on the ethics of emergency care research in LMICs. This paper examines the ethical and regulatory challenges to conducting emergency care research with human participants in LMICs. We outline key challenges, present potential solutions or frameworks for addressing these challenges, and identify gaps. Despite the ethical and regulatory challenges, conducting high-quality, ethical emergency care research in LMICs is possible and it is essential for global health. (shrink)

Developing World Bioethics, Volume 22, Issue 1, Page 15-22, March 2022.

We identify the ways the policies of leading international bioethics journals limit the participation of researchers working in the resource-constrained settings of low- and middle-income countries in the development of the field of bioethics. Lack of access to essential scholarly resources makes it extremely difficult, if not impossible, for many LMIC bioethicists to learn from, meaningfully engage in, and further contribute to the global bioethics discourse. Underrepresentation of LMIC perspectives in leading journals sustains the hegemony of Western bioethics, (...) limits the presentation of diverse moral visions of life, health, and medicine, and undermines aspirations to create a truly “global” bioethics. Limited attention to this problem indicates a lack of empathy and moral imagination on the part of bioethicists in high-income countries, raises questions about the ethics of bioethics, and highlights the urgent need to find ways to remedy this social injustice. (shrink)

In this review, I survey theoretical accounts of exploitation in business, chiefly through the example of low wage or sweatshop labor. This labor is associated with wages that fall below a living wage standard and include long working hours. Labor of this kind is often described as self-evidently exploitative and immoral (Van Natta 1995). But for those who defend sweatshop labor as the first rung on a ladder toward greater economic development, the charge that sweatshop labor is self-evidently exploitative fails (...) adequately to explain the nature of the alleged wrongdoing. While all sides might agree that poor working conditions are unfortunate and undesirable, defenders of sweatshop labor argue that they provide the best available employment alternative for some workers and the best chance at economic development for many low and middle income countries (LMICs). Some defenders of sweatshop labor even embrace the label of exploitation. <br><br>Unless there is a clear, widely understood account by which exploitation is a moral wrong, then charging a practice as exploitative will do little to advance debates over whether and why a practice is morally problematic. A considerable body of work has been developed applying a growing literature on exploitation to sweatshop labor. While many forms of moral wrong are associated with sweatshop labor, I will focus specifically on the worry that low wages allow relatively wealthy employers wrongfully to take advantage of or gain from relatively poor workers, especially in LMICs. In particular, I will focus on instances of alleged exploitation in employment relationships that are voluntary and mutually beneficial. I have two reasons for doing so. First, by restricting this review to voluntary and mutually beneficial instances of exploitation, I can isolate the moral wrong of exploitation from other moral wrongs, especially the wrongs of coercion and outright harms to workers. Second, the focus on mutually beneficial and voluntary relationships will allow for arguments that sweatshop labor is not only not exploitative, but is a morally praiseworthy means of helping to encourage economic growth in poor areas of the world and to provide jobs that pay better and are more stable than any existing alternatives.<br><br>In this review, I aim to accomplish three goals. First, I will provide an overview of the many different uses of the charge of exploitation in business practice through an examination of the uses of the term in the literature on sweatshop labor. While it is often not clear what kind of moral wrong is assumed to take place when the charge of exploitation is used, I will demonstrate that many distinct types of exploitation, connected to distinct moral wrongs, are used in the literature on sweatshop labor and elsewhere in business ethics. Specifically, I will identify two broad categories of exploitation—exploitation as unfairness and exploitation as the mere use of others—with subgroups under each main category of exploitation. Second, I will discuss which of these senses of exploitation are defensible as identifying clear moral wrongs that take place in the context of business and, specifically, sweatshop labor. As I will argue, not all uses of the charge of exploitation are capable of persuasively identifying clear moral wrongs. Moreover, there is not a single, clear type of exploitation that takes place in business but, rather, several distinct forms. Third, I will apply the lessons learned from my exploration of exploitation in sweatshop labor to other specific areas of business. As I will argue, there are multiple viable models of exploitation in the sweatshop literature that can illuminate exploitative practices of relatively well compensated employees, customers, suppliers, and entire communities. <br><br>While discussions of theories of exploitation tend to argue for a single, correct account of this moral wrong, my review of the literature on exploitation in sweatshop labor supports the conclusion that there are multiple defensible accounts of the moral wrong of exploitation. For this reason, those who would charge that a relationship is exploitative should specify the form of exploitation that they believe is taking place. (shrink)

Collaborations in global health research are on the rise because they enhance productivity, facilitate capacity building, accelerate output and make tackling big, multifactorial research questions possible. In this paper, I examine the concepts of trust and reliance in scientific collaborations in general, but also in the particular context of collaborations in global health research between high‐income countries and low‐and‐middle income countries (LMIC). I propose and defend the argument that given the particular characteristics of collaborations and demands of trust relationships, (...) reliance is a better relational mode for successful collaborations. Although reliance can be difficult to establish in situations where asymmetry of power exists, trust should not be the only relational mode available to LMIC researchers because of the type of vulnerability it introduces to the relationship. I conclude that the promotion of good collaborations requires addressing the power imbalances between partners, and establishing an even playing field in global health research. (shrink)

The curriculum design, faculty characteristics, and experience of implementing masters' level international research ethics training programs supported by the Fogarty International Center was investigated. Multiple pedagogical approaches were employed to adapt to the learning needs of the trainees. While no generally agreed set of core competencies exists for advanced research ethics training, more than 75% of the curricula examined included international issues in research ethics, responsible conduct of research, human rights, philosophical foundations of research ethics, and research regulation and ethical (...) review process. Common skills taught included critical thinking, research methodology and statistics, writing, and presentation proficiency. Curricula also addressed the cultural, social, and religious context of the trainees related to research ethics. Programs surveyed noted trainee interest in Western concepts of research ethics and the value of the transnational exchange of ideas. Similar faculty expertise profiles existed in all programs. Approximately 40% of faculty were female. Collaboration between faculty from low- and middleincome countries (LMICs) and high-income countries (HICs) occurred in most programs and at least 50% of HIC faculty had previous LMIC experience. This paper is part of a collection of papers analyzing the Fogarty International Research Ethics Education and Curriculum Development program. (shrink)

What has the past reaction to the COVID-19 pandemic taught us? We have seen that many low and middle-income countries (LMICs) still lack access to vaccines, and it seems little progress has been made in the last few months and year. This article discusses whether the current strategies, most notably, vaccine donations by the international community and the COVID-19 global access facility COVAX, offer meaningful solutions to tackle the problem. At the centre of our analysis, we compare the concepts of (...) “donations” and “charity” with “vaccine equity” and the “empowerment” of poorer countries. We suggest that the achievement of fair global vaccine production requires that our global approach is supportive of the idea of empowerment. We, therefore, need structural reforms, which would most importantly include capacity building, to positively impact this goal and to take the interests of the global poor seriously. (shrink)

Mounting evidence suggests that participation in clinical trials confers neither advantage nor disadvantage on those enrolled. Narrow focus on the question of a “trial effect,” however, distracts from a broader mechanism by which patients may benefit from ongoing clinical research. We hypothesize that the existence of clinical trials infrastructure—the organizational culture, systems, and expertise that develop as a product of sustained participation in cooperative clinical trials research—may function as a quality improvement lever, improving the quality of care and outcomes of (...) all patients within an institution or region independent of their individual participation in trials. We further contend that this “infrastructure effect” can yield particular benefits for patients in low- and middle-income countries. The hypothesis of an infrastructure effect as a quality improvement intervention, if correct, justifies enhanced research capacity in LMIC as a pillar of health system development. (shrink)

What has the past reaction to the COVID-19 pandemic taught us? We have seen that many low and middle-income countries (LMICs) still lack access to vaccines, and it seems little progress has been made in the last few months and year. This article discusses whether the current strategies, most notably, vaccine donations by the international community and the COVID-19 global access facility COVAX, offer meaningful solutions to tackle the problem. At the centre of our analysis, we compare the concepts of (...) “donations” and “charity” with “vaccine equity” and the “empowerment” of poorer countries. We suggest that the achievement of fair global vaccine production requires that our global approach is supportive of the idea of empowerment. We, therefore, need structural reforms, which would most importantly include capacity building, to positively impact this goal and to take the interests of the global poor seriously. (shrink)

Background The field of bioethics has evolved over the past half-century, incorporating new domains of inquiry that signal developments in health research, clinical practice, public health in its broadest sense and more recently sensitivity to the interdependence of global health and the environment. These extensions of the reach of bioethics are a welcome response to the growth of global health as a field of vital interest and activity. Methods This paper provides a critical interpretive review of how the term “global (...) health ethics” has been used and defined in the literature to date to identify ethical issues that arise and need to be addressed when deliberating on and working to improve the discourse on ethical issues in health globally. Results Selected publications were analyzed by year of publication and geographical distribution, journal and field, level of engagement, and ethical framework. Of the literature selected, 151 articles were written by authors in high-income countries, as defined by the World Bank country classifications, 8 articles were written by authors in low- or middle-income countries, and 13 articles were collaborations between authors in HIC and LMIC. All of the articles selected except one from 1977 were published after 1998. Literature on global health ethics spiked considerably from the early 2000s, with the highest number in 2011. One hundred twenty-seven articles identified were published in academic journals, 1 document was an official training document, and 44 were chapters in published books. The dominant journals were the American Journal of Bioethics, Developing World Bioethics, and Bioethics. We coded the articles by level of engagement within the ethical domain at different levels: interpersonal, institutional, international, and structural. The ethical frameworks at use corresponded to four functional categories: those examining practical or narrowly applied ethical questions; those concerned with normative ethics; those examining an issue through a single philosophical tradition; and those comparing and contrasting insights from multiple ethical frameworks. Conclusions This critical interpretive review is intended to delineate the current contours and revitalize the conversation around the future charge of global health ethics scholarship. (shrink)

The field of bioethics has evolved over the past half-century, incorporating new domains of inquiry that signal developments in health research, clinical practice, public health in its broadest sense and more recently sensitivity to the interdependence of global health and the environment. These extensions of the reach of bioethics are a welcome response to the growth of global health as a field of vital interest and activity. This paper provides a critical interpretive review of how the term “global health ethics” (...) has been used and defined in the literature to date to identify ethical issues that arise and need to be addressed when deliberating on and working to improve the discourse on ethical issues in health globally. Selected publications were analyzed by year of publication and geographical distribution, journal and field, level of engagement, and ethical framework. Of the literature selected, 151 articles were written by authors in high-income countries, as defined by the World Bank country classifications, 8 articles were written by authors in low- or middle-income countries, and 13 articles were collaborations between authors in HIC and LMIC. All of the articles selected except one from 1977 were published after 1998. Literature on global health ethics spiked considerably from the early 2000s, with the highest number in 2011. One hundred twenty-seven articles identified were published in academic journals, 1 document was an official training document, and 44 were chapters in published books. The dominant journals were the American Journal of Bioethics, Developing World Bioethics, and Bioethics. We coded the articles by level of engagement within the ethical domain at different levels: interpersonal, institutional, international, and structural. The ethical frameworks at use corresponded to four functional categories: those examining practical or narrowly applied ethical questions; those concerned with normative ethics; those examining an issue through a single philosophical tradition; and those comparing and contrasting insights from multiple ethical frameworks. This critical interpretive review is intended to delineate the current contours and revitalize the conversation around the future charge of global health ethics scholarship. (shrink)

The field of bioethics has evolved over the past half-century, incorporating new domains of inquiry that signal developments in health research, clinical practice, public health in its broadest sense and more recently sensitivity to the interdependence of global health and the environment. These extensions of the reach of bioethics are a welcome response to the growth of global health as a field of vital interest and activity. This paper provides a critical interpretive review of how the term “global health ethics” (...) has been used and defined in the literature to date to identify ethical issues that arise and need to be addressed when deliberating on and working to improve the discourse on ethical issues in health globally. Selected publications were analyzed by year of publication and geographical distribution, journal and field, level of engagement, and ethical framework. Of the literature selected, 151 articles were written by authors in high-income countries, as defined by the World Bank country classifications, 8 articles were written by authors in low- or middle-income countries, and 13 articles were collaborations between authors in HIC and LMIC. All of the articles selected except one from 1977 were published after 1998. Literature on global health ethics spiked considerably from the early 2000s, with the highest number in 2011. One hundred twenty-seven articles identified were published in academic journals, 1 document was an official training document, and 44 were chapters in published books. The dominant journals were the American Journal of Bioethics, Developing World Bioethics, and Bioethics. We coded the articles by level of engagement within the ethical domain at different levels: interpersonal, institutional, international, and structural. The ethical frameworks at use corresponded to four functional categories: those examining practical or narrowly applied ethical questions; those concerned with normative ethics; those examining an issue through a single philosophical tradition; and those comparing and contrasting insights from multiple ethical frameworks. This critical interpretive review is intended to delineate the current contours and revitalize the conversation around the future charge of global health ethics scholarship. (shrink)

BackgroundArtificial intelligence has been described as the “fourth industrial revolution” with transformative and global implications, including in healthcare, public health, and global health. AI approaches hold promise for improving health systems worldwide, as well as individual and population health outcomes. While AI may have potential for advancing health equity within and between countries, we must consider the ethical implications of its deployment in order to mitigate its potential harms, particularly for the most vulnerable. This scoping review addresses the following question: (...) What ethical issues have been identified in relation to AI in the field of health, including from a global health perspective?MethodsEight electronic databases were searched for peer reviewed and grey literature published before April 2018 using the concepts of health, ethics, and AI, and their related terms. Records were independently screened by two reviewers and were included if they reported on AI in relation to health and ethics and were written in the English language. Data was charted on a piloted data charting form, and a descriptive and thematic analysis was performed.ResultsUpon reviewing 12,722 articles, 103 met the predetermined inclusion criteria. The literature was primarily focused on the ethics of AI in health care, particularly on carer robots, diagnostics, and precision medicine, but was largely silent on ethics of AI in public and population health. The literature highlighted a number of common ethical concerns related to privacy, trust, accountability and responsibility, and bias. Largely missing from the literature was the ethics of AI in global health, particularly in the context of low- and middle-income countries.ConclusionsThe ethical issues surrounding AI in the field of health are both vast and complex. While AI holds the potential to improve health and health systems, our analysis suggests that its introduction should be approached with cautious optimism. The dearth of literature on the ethics of AI within LMICs, as well as in public health, also points to a critical need for further research into the ethical implications of AI within both global and public health, to ensure that its development and implementation is ethical for everyone, everywhere. (shrink)

Human subject trials of pharmaceuticals in low and middle income countries have been associated with the moral wrong of exploitation on two grounds. First, these trials may include a placebo control arm even when proven treatments for a condition are in use in other parts of the world. Second, the trial researchers or sponsors may fail to make a successful treatment developed through the trial available to either the trial participants or the host community following the trial.Many commentators have argued (...) that a single form of exploitation takes place during human subject research in LMICs. These commentators do not, however, agree as to what kind of moral wrong exploitation is or when exploitation is morally impermissible. In this paper, I have two primary goals. First, I will argue for a taxonomy of exploitation that identifies three distinct forms of exploitation. While each of these forms of exploitation has its critics, I will argue that they can each be developed into plausible accounts of exploitation tied to different vulnerabilities and different forms of wrongdoing. Second, I will argue that each of these forms of exploitation can coexist in single situations, including human subject trials of pharmaceuticals. This lesson is important, since different forms of exploitation in a single relationship can influence, among other things, whether the relationship is morally permissible. (shrink)

ABSTRACTThere has considerable interest in bringing low/middle-income countries scientists into discussions on Open Data – both as contributors and users. The establishment of in situ data sharing practices within LMIC research institutions is vital for the development of an Open Data landscape in the Global South. Nonetheless, many LMICs have significant challenges – resource provision, research support and extra-laboratory infrastructures. These low-resourced environments shape data sharing activities, but are rarely examined within Open Data discourse. In particular, little attention is (...) given to how these research environments shape scientists’ perceptions of data sharing incentives. This paper expands on these issues of incentivizing data sharing, using data from a quantitative survey disseminated to life scientists in 13 countries in sub-Saharan Africa. This interrogated not only perceptions of data sharing amongst LMIC scientists, but also how these are connected to the research environm... (shrink)

Cognitive enhancement (CE) covers a broad spectrum of methods, including behavioral techniques, nootropic drugs, and neuromodulation interventions. However, research on their use in children has almost exclusively been carried out in high-income countries with limited understanding of how experts working with children view their use in low- and middle- income countries (LMICs). This study examines perceptions on cognitive enhancement, their techniques, neuroethical issues about their use from an LMICs perspective.Seven Indian experts were purposively sampled for their expertise in bioethics, child (...) development and child education. In-depth interviews were conducted using a semi-structured topic guide to examine (1) understanding of CE, (2) which approaches were viewed as cognitive enhancers, (3) attitudes toward different CE techniques and (4) neuroethical issues related to CE use within the Indian context. All interviews were audio recorded and transcribed before thematic analysis.Findings indicate Indian experts view cognitive enhancement as a holistic positive impact on overall functioning and well-being, rather than improvement in specific cognitive abilities. Exogenous agents, and neuromodulation were viewed with skepticism, whereas behavioral approaches were viewed more favorably. Neuroethical concerns included equitable access to CE, limited scientific evidence and over-reliance on technology to address societal problems. This highlights the need for more contextually relevant neuroethics research in LMICs. (shrink)

South Africa shared with the world the warning of a new strain of SARS-CoV2, Omicron, in November 2021. As a result, many high-income countries (HICs) instituted complete travel bans on persons leaving South Africa and other neighbouring countries. These bans were unnecessary from a scientific standpoint, and they ran counter to the International Health Regulations. In short, South Africa was penalized for sharing data. Data sharing during pandemics is commonly justified by appeals to solidarity. In this paper, we argue that (...) solidarity is, at best, an aspirational ideal to work toward but that it cannot ground an obligation to share data. Instead, low-and-middle income countries (LIMCs) should be guided by the principle of reciprocity, which states that we ought to return good for good received. Reciprocity is necessarily a conditional principle. LMICs, we argue, should only share data during future pandemics on the condition that HICs provide enforceable assurances that the benefits of data sharing will be equitably distributed and that LMICs won’t be penalized for sharing information. (shrink)

BackgroundHuman infection studies (HIS) are valuable in vaccine development. Deliberate infection, however, creates challenging questions, particularly in low and middle-income countries (LMICs) where HIS are new and ethical challenges may be heightened. Consultation with stakeholders is needed to support contextually appropriate and acceptable study design. We examined stakeholder perceptions about the acceptability and ethics of HIS in Malawi, to inform decisions about planned pneumococcal challenge research and wider understanding of HIS ethics in LMICs.MethodsWe conducted 6 deliberative focus groups and 15 (...) follow-up interviews with research staff, medical students, and community representatives from rural and urban Blantyre. We also conducted 5 key informant interviews with clinicians, ethics committee members, and district health government officials.ResultsStakeholders perceived HIS research to have potential population health benefits, but they also had concerns, particularly related to the safety of volunteers and negative community reactions. Acceptability depended on a range of conditions related to procedures for voluntary and informed consent, inclusion criteria, medical care or support, compensation, regulation, and robust community engagement. These conditions largely mirror those in existing guidelines for HIS and biomedical research in LMICs. Stakeholder perceptions pointed to potential tensions, for example, balancing equity, safety, and relevance in inclusion criteria.ConclusionsOur findings suggest HIS research could be acceptable in Malawi, provided certain conditions are in place. Ongoing assessment of participant experiences and stakeholder perceptions will be required to strengthen HIS research during development and roll-out. (shrink)

While the effects of COVID-19 are being felt globally, the pandemic disproportionately affects lower- and middle-income countries (LMICs) by exacerbating existing global health disparities. In this article, we illustrate how intersecting upstream social determinants of global health form a disparity pathway that compromises LMICs’ ability to respond to the pandemic. We consider pre-existing disease burden and baseline susceptibility, limited disease prevention resources, and unequal access to basic and specialized health care, essential drugs, and clinical trials. Recognizing that ongoing and underlying (...) disparity issues will require long-term correction efforts, this pathway approach is nonetheless helpful to inform ethical responses to this global pandemic. It can facilitate international cooperation during the pandemic to reduce the disparate burdens among different regions without imposing significant burden on any particular contributor. The pathway approach allows international stakeholders in various social positions to respond to different components of the pathway based on their respective strengths and resources to help break the cycle of global health inequity. Guided by the ethical principles of relational and pragmatic solidarity, we argue for a coordinated global division of labor such that different stakeholders can collaborate to foster equitable healthcare access during this pandemic. (shrink)

Background International electives are often considered a valuable learning opportunity for medical students. Yet, as travelling to lower and middle income countries (LMICs) becomes more common, ethical considerations of such practices emerge. We conducted a scoping review to assess the extent to which five ethical themes were addressed in existing literature about electives, with the aim of investigating the ethical impacts of medical student electives on local resources, patients and clinicians in LMICs. Methods We systematically searched PubMed, Global Health and (...) Embase databases using the search terms “(ethics) AND (medical electives)”. Thematic content analysis was undertaken using a combination of deductive and inductive themes. The deductive themes included: exceeding clinical competence, use of limited local resources, respect for patients and local culture, collaboration with local community/colleagues, and one-sided benefits in partnership. In addition, we also allowed for emerging themes within the data, and conducted a narrative synthesis of the results. Results A total of 37 papers discussed ethical issues relating to medical student international electives to LMICs. More publications were written from the medical student perspective (n = 14), than by the host-institution (n = 5), with nearly half written from third-party perspectives (n = 18). Negative impacts on local host students and impact upon patient care were identified as additional ethical considerations. Conclusions Our review demonstrated that while there is a degree of awareness in the existing literature of the potential negative impacts of medical electives to local LMIC students’ access to medical education and patient care, continued work is needed to ensure equitable partnerships. We recommend that these ethical themes should be further explored in pre-departure elective teaching courses and post-elective debriefs to increase medical students’ awareness of the impact of their presence on host communities. (shrink)

BackgroundBiobanks have recently been established in several low- and middle-income countries in the Arab region of the Middle East. We aimed to explore the views of biobank managers regarding the challenges, ethical issues, and governance arrangements of their biobanks.MethodsIn-depth semi-structured qualitative interviews were conducted with a purposive sample of eight biobank managers from Egypt, Jordan, and Sudan. Interviews were performed either face-to-face, by phone, or via Zoom and lasted approximately 45–75 min. After verbal consent, interviews were recorded and then transcribed. (...) The authors performed a thematic analysis of the transcripts independently and then integrated the themes via a consensus process.ResultsBiobank managers discussed the main challenges in establishing their biobanks. These included the staff’s lack of experience and training, limited funds, deficit awareness of biobanks, obtaining funding from different sources. Only four reported they were active in distributing biospecimens and health data to researchers. Six biobanks used a broad consent model, one used tiered consent, and another allowed participants to opt-out of being recontacted. Five managers avoided partnerships with pharmaceutical companies due to concerns with unfavorable reactions from the community. Five managers did not have clear policies for returning research results to the donors. Five expressed challenges with sample and data sharing with international collaborators; all five used material transfer agreements. The biobank managers revealed variable governance arrangements and activities with community involving awareness and educational efforts rather than active engagement. Several expressed the importance of transparency with the operations of their biobanks and gaining the trust of their stakeholders.ConclusionManagers of biobanks in LMICs in the Arab Middle East encounter financial, operational, and social challenges toward their sustainability efforts. Discussions with key stakeholders are warranted to manage ethical issues involving informed consent, privacy, data sharing, and the return of results. We recommend that biobank managers in the Arab Middle East form collaborative networks within the region and internationally, develop trusting governance relationships with their stakeholders, and pursue engagement activities with their communities to enhance trust. (shrink)

BackgroundHealthcare ethics is neglected in clinical practice in LMICs such as Nepal. The main objective of this study was to assess the current status of knowledge, attitude and practice of healthcare ethics among resident doctors and ward nurses in a tertiary teaching hospital in Nepal.MethodsThis was a cross sectional study conducted among resident doctors and ward nurses in the largest tertiary care teaching hospital of Nepal during January- February 2016 with a self-administered questionnaire. A Cramer’s V value was assessed to (...) ascertain the strength of the differences in the variables between doctors and nurses. Association of variables were determined by Chi square and statistical significance was considered if p value was less than 0.05.ResultsOur study demonstrated that a significant proportion of the doctors and nurses were unaware of major documents of healthcare ethics: Hippocratic Oath, Nuremberg code and Helsinki Declaration. A high percentage of respondents said that their major source of information on healthcare ethics were lectures, books, and journals. Attitude of doctors and nurses were significantly different in 9 out of 22 questions pertaining to different aspects of healthcare ethics. More nurses had agreement than doctors on the tested statements pertaining to different aspects of healthcare ethics except for need of integration of medical ethics in ungraduate curricula,paternalistic attitude of doctor was disagreed more by doctors. Notably, only few doctors stood in support of physician-assisted dying.ConclusionsSignificant proportion of doctors and nurses were unaware of three major documents on healthcare ethics which are the core principles in clinical practice. Provided that a high percentage of respondents had motivation for learning medical ethics and asked for inclusion of medical ethics in the curriculum, it is imperative to avail information on medical ethics through subscription of journals and books on ethics in medical libraries in addition to lectures and training at workplace on medical ethics which can significantly improve the current paucity of knowledge on medical ethics. (shrink)

Public health interventions, particularly in low‐ and middle‐income countries (LMICs), are implemented with the never‐ending challenge of limited resources and the ever‐present challenge of choosing between interventions. While necessary, the application of ethical analysis is absent in most of such decision‐making, resulting in fewer favourable consequences. In applying ethical principles to the saving of women from the burden of cervical cancer, I argue in favour of saving statistical lives (investing in prevention) in LMICs, by mapping the principles of justice in (...) resource allocation to the prevailing circumstance. The key facts in this circumstance are that providing treatment (which is saving identified lives), involves mostly providing palliative treatment, which is associated with a high likelihood of death among the identified lives while undergoing treatment or shortly thereafter. I focus on the dilemma of having a national cancer prevention program versus the expansion of cancer treatment facilities. (shrink)

The amount of biomedical research being conducted around the world has greatly expanded over the past 15 years, with particularly large growth occurring in low- and middle-income countries. This increased focus on understanding and responding to disease burdens around the world has brought forth a desire to help LMIC institutions enhance their own capacity to conduct scientifically and ethically sound research. In support of these goals the Johns Hopkins-Fogarty African Bioethics Training Program has, for the past six years, partnered (...) with three research institutions in Africa to support research ethics capacity. Each partnership began with a baseline evaluation of institutional research ethics environments in order to properly tailor capacity strengthening activities and help direct limited institutional resources. Through the course of these partnerships we have learned several lessons regarding the evaluation process and the framework used to complete the assessments. We believe that these lessons are generalizable and will be useful for groups conducting such assessments in the future. (shrink)

continent. 2.1 (2012): 2–5 To begin with, as we understand from a remote place like Seoul, there have been two different conceptions of materiality in the Western experimental ?lm history: materiality of cinema and of ?lm. The former has been represented by the practitioners of the so-called the “Expanded Cinema” and the latter by the tradition of the “Hand-made” ?lm. Whereas for the Expanded Cinema, the materiality or the “medium-speci?city” includes not only the ?lm material but also the entire condition (...) and environment in which the cinematic experience is situated (i.e.: screen, projector, audience and theatre); for the Hand-made ?lm, it is the whole ?lmic process prior to the screening in front of the audience (i.e.: hand-processing and optical-printing). The two practices share in the materialist turn that opens up the radical possibilities of aesthetic (and even political) interventions into a process previously considered seamless and transparent. What can be called to attention through the materialist turn includes the aesthetic-institutional process in the projection-spectator relation and the (non-) representational process in ?lm-making. Moreover, these interventions bring their own temporalities back to those processes, and this returning emancipates the temporalities from their subordination to the cinema-as-commodity. Hangjun Lee is a ?lm-based artist whose practice is concerned with Hand-made Film and Experimental Cinema. Given these interests, Lee questions the linkage between materiality and temporality. This was his preoccupation around 2006, the time at which he started to collaborate with Chulki Hong, the noise improviser. The improvisational nature of their audio-visual performances opened means of detouring from the conventional editing techniques. Their collaboration also afforded critical investigations into the performativity of the practices in both the darkroom and the screening room, as well as in the private recording/practicing studio, and public performance spaces for the improvising musician. In fact, it was a kind of common interest shared by both us from the outset. In our collaboration, we avoid sacri?cing/concealing/minimizing one form of performativity (the performative nature and temporality of compositional process) for the sake of the other (i.e. those in improvisational and executional process). In the ?eld of experimental music and sound, this kind of approach has been comprehensively called “cracking” or “hacking”. The concepts are ?nely formulated in the coinage of “Cracked Everyday Electronics” (by Voice Crack) or more generally “Handmade Electronic Music” (by Nicolas Collins). 1 And this was a pure but perhaps necessary coincidence. the original title of the work of our collaboration and, retrospectively, of the set of our working principles at the same time, “The Cracked Share” was named by Lee after Georges Bataille’s masterwork, The Accursed Share , with the substitution of the adjective with “Cracked” as a synonym for ‘reticulated’ in the photographic image. We think the ascetic and subtractive aesthetic turn of the contemporary non-idiomatic improvised (and even somewhat non-improvised) music 2 pushed us further towards more radical dissociation with the empty temporality of commodi?ed audio-visual experience. It can be called the aesthetics of “without,” and exemplars include Yoshihide Otomo’s Turntable Without Records , Sachiko M’s Sampler without Samples . There are also other radical experiments even with the (non-)improvised music without noise and sounds that neatly meet the rules and idioms of the existing/established experimental music. For us, this thread among the experimental music currents weighs in its emphasis on subtractive and dissociational power unique to improvisational action. Surely, the tradition of the Cracked and Handmade improvised music teaches us the crucial lesson that “[m]edia and mediation are never transparent” and that “[m]ediation actively transforms data from one form to another and is never passive.” 3 We couldn’t agree to this statement more. However, without the removal and withdrawal power of improvisation that poses and keeps both subjects (performer and audience) and objects (projector and instrument) in “inferiority,” 4 generalized cracking and hacking practices—or simply “glitch”—in music and visuals would be either sublimated into the mystical and ritualistic forms of “Film Alchemy” and “Noise Music” (to which both of us still strongly feel a belonging but also, more or less, ambivalent sentiments), or else assimilated into the logic of the commodi?ed audio-visual communication. Today in music, this principle of improvisational performativity should be formulated as the dis-organization of sound against the associational de?nition of (electronic) music and it needs to be translated into audio-visual experiences. In other words, cracking practices of free improvisation need not be limited in artistic creativity, in a darkroom, in a studio, or on the stage; the principle of the dis-organization of sound should be the principle of dis-organization (or cracked organization) of audio-visual performance space itself. NOTES 1) Norbert Möslang, “How Does a Bicycle Light Sound?: Cracked Everyday Electronics,” Leonardo Music Journal 14 (2004): 83; Nicolas Collins, Handmade Electronic Music: The Art of Hardware Hacking (New York: Rutledge, 2006). 2) We refer this not to the historical style or genre but rather the idea and practice that ?free improvisation? stands for. On the distinction between idiomatic and non-idiomatic improvisation, see Derek Bailey, Improvisation: Its Nature and Practice in Music (Cambridge, MA: Da Capo, 1993). On radically politico-histrorical interpretations of free improvisation and noise music from various present viewpoints, see Noise and Capitalism , (eds.) Mattin & Anthony Iles (Arteleku Audiolab, 2009). 3) Caleb Kelly, Cracked Media: The Sound of Malfunction (Cambridge: MIT Press, 2009), p. 29. 4) I borrow the term from my long-time collaborator, Choi Joonyong. See Ryu Hankil, Hong Chulki & Choi Joonyong, Inferior Sounds (Balloon and Needle, CD, 2011). (shrink)

Research on gender and antimicrobial resistance (AMR) beyond women’s biological susceptibility is limited. A gender and equity lens in AMR research is necessary to promote gender equality and support the effectiveness, uptake, and sustainability of real-world AMR solutions. We argue that it is an ethical and social justice imperative to include gender and related intersectional issues in AMR research and implementation. An intersectional exploration of the interplay between people’s diverse identities and experiences, including their gender, socio-economic status, race, disability, age, (...) and sexuality, may help us understand how these factors reinforce AMR risk and vulnerability and ensure that interventions to reduce the risk of AMR do not impact unevenly. This paper reports on the findings of a systematic scoping review on the interlinkages between AMR, gender and other socio-behavioural characteristics to identify priority knowledge gaps in human and animal health in LMICs. The review focused on peer-reviewed and grey literature published between 2017 and 2022. Three overarching themes were gendered division of caregiving roles and responsibilities, gender power relations in decision-making, and interactions between gender norms and health-seeking behaviours. Research that fails to account for gender and its intersections with other lines of disadvantage, such as race, class and ability, risks being irrelevant and will have little impact on the continued and dangerous spread of AMR. We provide recommendations for integrating an intersectional gender lens in AMR research, policy and practice. (shrink)

Bioethics should pay more attention to globalization and some of its consequences than it has done so far. The COVID-19 pandemic would not have been possible without globalization, which has also increased some of its negative consequences. Globalization has intensified wildlife trade in the world. One of the main hypotheses about the origin of this pandemic is that it originated in illegal forms of wildlife trade in China. In the last 30 or 40 years, there have been zoonotic outbreaks at (...) a much frequent pace than before, many of those have been related to wildlife trade. Legal and illegal wildlife trade has grown in the shadow of globalization. Second, globalization has had a huge impact on the redistribution of wealth in the world. Since 1990 income inequality has increased in most high- and in many middle- and low-income countries. A country’s level of pre-COVID income inequality is the best predictor of the COVID death rate. These two issues are not unrelated. People living in poverty in LMIC tend to suffer more from infectious diseases and tend to be marginalized from the health sector. Additionally, poverty tends to reproduce the conditions under which zoonotic diseases can more easily spread. (shrink)

Healthcare ethics is neglected in clinical practice in LMICs such as Nepal. The main objective of this study was to assess the current status of knowledge, attitude and practi...

Community engagement is gaining prominence in global health research. So far, a philosophical rationale for why researchers should perform community engagement during such research has not been provided by ethics scholars. Its absence means that conducting community engagement is still often viewed as no more than a ‘good idea’ or ‘good practice’ rather than ethically required. In this article, we argue that shared health governance can establish grounds for requiring the engagement of low‐ and middle‐income country (LMIC) community members (...) in global health research, where such research aims to help reduce health disparities. This philosophical basis has important implications for the ethical goals ascribed to engagement and the approach adopted to undertake it. We suggest the ethical goals of engagement in equity‐oriented global health research should include: (a) generating research topics and questions that reflect the key problems disadvantaged groups face in accessing healthcare, services and broader social determinants of health and (b) promoting the translation of research findings into policy and practice in ways that benefit the health of disadvantaged groups. We propose engagement practice should have the following features: deliberation with LMIC community members to make a range of project decisions, beginning with setting research topics and questions; inclusion of members of disadvantaged groups and those with the power to change policy and practice to benefit them; and purposeful structuring of deliberations to minimize the impact of power disparities between LMIC community members. Finally, we reflect on how these features differ from those typical of much current community engagement practice in LMICs. (shrink)

Building a biobank network in developing countries is essential to foster genomic research and precision medicine for patients’ benefit. However, there are serious barriers to establishing biobanks in low-income and middle-income countries (LMICs), including Ukraine. Here, we outline key barriers and essential milestones for the successful expansion of biobanks, genomic research and personalised medicine in Ukraine, drawing from the experience of other LMICs. A lack of legal and ethical governance in conjunction with limited awareness about biobanking and community distrust are (...) the principal threats to establishing biobanks. The experiences of LMICs suggest that Ukraine urgently needs national guidelines covering ethical and legal aspects of biospecimen-related research. National guidelines must be consistent with international ethical recommendations for safeguarding participants’ rights, welfare and privacy. Additionally, efforts to educate and engage physicians and patient communities are essential for achieving biobanking goals and benefits for precision medicine and future patients. (shrink)

The Belmont Report was written by a US Commission charged by the US Congress to advise on research supported by the US government. Its focus was understandably domestic. In the 40 years since its publication, clinical research has become increasingly international. Many clinical trials have sites in multiple countries, and many of the host countries are relatively impoverished. Such research raises some distinctive ethical issues. This paper outlines some of the key ethical challenges that have been raised by clinical research (...) conducted in low- and middle-income countries (LMICs) and sponsored by high-income country (HIC) institutions. It then considers whether the Belmont Report has the resources to address these problems and argues that it does not. The article closes by noting some parallels between this international research and domestic US research, which suggest that the US might benefit from the discussions abroad. (shrink)

BackgroundStreet-connected children and youth in low- and middle-income countries have multiple vulnerabilities in relation to participation in research. These require additional considerations that are responsive to their needs and the social, cultural, and economic context, while upholding core ethical principles of respect for persons, beneficence, and justice. The objective of this paper is to describe processes and outcomes of adapting ethical guidelines for SCCY’s specific vulnerabilities in LMIC.MethodsAs part of three interrelated research projects in western Kenya, we created procedures (...) to address SCCY’s vulnerabilities related to research participation within the local context. These consisted of identifying ethical considerations and solutions in relation to community engagement, equitable recruitment, informed consent, vulnerability to coercion, and responsibility to report.ResultsSubstantial community engagement provided input on SCCY’s participation in research, recruitment, and consent processes. We designed an assent process to support SCCY to make an informed decision regarding their participation in the research that respected their autonomy and their right to dissent, while safeguarding them in situations where their capacity to make an informed decision was diminished. To address issues related to coercion and access to care, we worked to reduce the unequal power dynamic through street outreach, and provided access to care regardless of research participation.ConclusionsAlthough a vulnerable population, the specific vulnerabilities of SCCY can to some extent be managed using innovative procedures. Engaging SCCY in ethical research is a matter of justice and will assist in reducing inequities and advancing their health and human dignity. (shrink)

The conduct of research in settings affected by disasters such as hurricanes, floods and earthquakes is challenging, particularly when infrastructures and resources were already limited pre-disaster. However, since post-disaster research is essential to the improvement of the humanitarian response, it is important that adequate research ethics oversight be available. We aim to answer the following questions: 1) what do research ethics committee members who have reviewed research protocols to be conducted following disasters in low- and middle-income countries perceive as the (...) key ethical concerns associated with disaster research?, and 2) in what ways do REC members understand these concerns to be distinct from those arising in research conducted in non-crisis situations? This qualitative study was developed using interpretative description methodology; 15 interviews were conducted with REC members. Four key ethical issues were identified as presenting distinctive considerations for disaster research to be implemented in LMICs, and were described by participants as familiar research ethics issues that were amplified in these contexts. First, REC members viewed disaster research as having strong social value due to its potential for improving disaster response, but also as requiring a higher level of justification compared to other research settings. Second, they identified vulnerability as an overarching concern for disaster research ethics, and a feature that required careful and critical appraisal when assessing protocols. They noted that research participants’ vulnerabilities frequently change in the aftermath of a disaster and often in unpredictable ways. Third, they identified concerns related to promoting and maintaining safety, confidentiality and data security in insecure or austere environments. Lastly, though REC members endorsed the need and usefulness of community engagement, they noted that there are significant challenges in a disaster setting over and above those typically encountered in global health research to achieve meaningful community engagement. Disaster research presents distinctive ethical considerations that require attention to ensure that participants are protected. As RECs review disaster research protocols, they should address these concerns and consider how justification, vulnerability, security and confidentially, and community engagement are shaped by the realities of conducting research in a disaster. (shrink)

COVID-19 continues to spread across the globe at an exponential speed, infecting millions and overwhelming even the most prepared healthcare systems. Concerns are looming that the healthcare systems in low- and middle-income countries are mostly unprepared to combat the virus because of limited resources. The problems in LMICs are exacerbated by the fact that citizens in these countries generally exhibit low trust in the healthcare system because of its low quality, which could trigger a number of uncooperative behaviors. In this (...) paper, we focus on one such behavior and investigate the relationship between trust in the healthcare system and the probability of potential treatment-seeking behavior upon the appearance of the first symptoms of COVID-19. First, we provide motivating evidence from a unique national online survey administered in Armenia–a post-Soviet LMIC country. We then present results from a large-scale survey experiment in Armenia that provides causal evidence supporting the investigated relationship. Our main finding is that a more trustworthy healthcare system enhances the probability of potential treatment-seeking behavior when observing the initial symptoms. (shrink)

Scholarship focusing on how international research can contribute to justice in global health has primarily explored requirements for the conduct of clinical trials. Yet health systems research in low- and middle-income countries has increasingly been identified as vital to the reduction of health disparities between and within countries. This paper expands an existing ethical framework based on the health capability paradigm – research for health justice – to externally-funded health systems research in LMICs. It argues that a specific form of (...) health systems research in LMICs is required if the enterprise is to advance global health equity. “Research for health justice” requirements for priority setting, research capacity strengthening, and post-study benefits in health systems research are derived in light of the field's distinctive characteristics. Specific obligations are established for external research actors, including governments, funders, sponsors, and investigators. How these framework requirements differ from those for international clinical research is discussed. (shrink)

International research is an essential means of reducing health disparities between and within countries and should do so as a matter of global justice. Research funders from high-income countries have an obligation of justice to support health research in low and middle-income countries that furthers such objectives. This paper investigates how their current funding schemes are designed to incentivise health systems research in LMICs that promotes health equity. Semi-structured in-depth interviews were performed with 16 grants officers working for 11 funders (...) and organisations that support health systems research: the Alliance for Health Policy and Systems Research, Comic Relief, Doris Duke Foundation, European Commission, International Development Research Centre, Norwegian Agency for Development Cooperation, Research Council of Norway, Rockefeller Foundation, UK Department of International Development, UK Medical Research Council, and Wellcome Trust. Thematic analysis of the data demonstrates their funding schemes promote health systems research with five key features that advance health equity: being conducted with worst-off populations, focusing on research topics that advance equitable health systems, having LMIC ownership of the research agenda, strengthening LMIC research capacity, and having an impact on health disparities. The different types of incentives that encouraged proposed projects to have these features are identified and classified by their strength. It is suggested that research funders ought to create and maintain funding schemes with strong incentives for the features identified above in order to more effectively help reduce global health disparities. (shrink)

Obtaining ‘informed consent’ from every individual participant involved in health research is a mandatory ethical practice. Informed consent is a process whereby potential participants are genuinely informed about their role, risk and rights before they are enrolled in the study. Thus, ethics committees in most countries require ‘informed consent form’ as part of an ethics application which is reviewed before granting research ethics approval. Despite a significant increase in health research activity in low-and middle-income countries in recent years, only limited (...) work has been done to address ethical concerns. Most ethics committees in LMICs lack the authority and/or the capacity to monitor research in the field. This is important since not all research, particularly in LMICs region, complies with ethical principles, sometimes this is inadvertently or due to a lack of awareness of their importance in assuring proper research governance. With several examples from Nepal, this paper reflects on the steps required to obtain informed consents and highlights some of the major challenges and barriers to seeking informed consent from research participants. At the end of this paper, we also offer some recommendations around how can we can promote and implement optimal informed consent taking process. We believe that paper is useful for researchers and members of ethical review boards in highlighting key issues around informed consent. (shrink)

Background Community advisory boards have expanded beyond high-income countries and play an increasing role in low- and middle-income country research. Much research has examined CABs in HICs, but less is known about CABs in LMICs. The purposes of this scoping review are to examine the creation and implementation of CABs in LMICs, including identifying frequently reported challenges, and to discuss implications for research ethics. Methods We searched five databases for publications describing or evaluating CABs in LMICs. Two researchers independently reviewed (...) articles for inclusion. Data related to the following aspects of CABs were extracted from included publications: time, country, financial support, research focus, responsibilities, and challenges. Thematic analyses were used to summarize textual data describing challenges. Results Our search yielded 2005 citations, 83 of which were deemed eligible for inclusion. Most studies were published between 2010 and 2017. Upper-middle-income countries were more likely to have studies describing CABs, with South Africa, China, and Thailand having the greatest numbers. The United States National Institutes of Health was the main source of financial support for CABs. Many CABs focused on HIV research. Thirty-four studies reported how CABs influenced the informed consent process for clinical trials or other aspects of research ethics. CAB responsibilities were related to clinical trials, including reviewing study protocols, educating local communities about research activities, and promoting the ethical conduct of research. Challenges faced by CABs included the following: incomplete ethical regulations and guidance; limited knowledge of science among members of communities and CABs; unstable and unbalanced power relationships between researchers and local communities; poor CAB management, including lack of formal participation structures and absence of CAB leadership; competing demands for time that limited participation in CAB activities; and language barriers between research staff and community members. Several challenges reflected shortcomings within the research team. Conclusions Our findings examine the formation and implementation of CABs in LMICs and identify several ethical challenges. These findings suggest the need for further ethics training among CAB members and researchers in LMICs. (shrink)