Health systems research is widely identified as an indispensable means to achieve the goal of health equity between and within countries. Numerous health systems research consortia comprised of institutions from high-income countries and low and middle-income countries are currently undertaking programs of research in LMICs. These partnerships differ from collaborations that carry out single projects in the multiplicity of their goals, scope of their activities, and nature of their management. Recent conceptual work has (...) explored what features might be necessary for health systems research consortia and their research programs to promote health equity. Identified features include selecting research priorities that focus on improving access to high-quality health services and/or financial protection for disadvantaged populations in LMICs and conducting research capacity strengthening that promotes the independent conduct of health systems research in LMICs. Yet, there has been no attempt to investigate whether existing consortia have such characteristics. This paper describes the results of a survey undertaken with health systems research consortia leaders worldwide to assess how consistent current practice is with the proposed ethical guidance. The findings suggest that consortia may be fairly well organised to promote health equity, but have scope for improvement, particularly in terms of achieving inclusive priority-setting. (shrink)

Can the institutional systems that prepare Black nurse researchers question the ways their systemic pathways have impacted health equity knowledge development in nursing? We invite our readers to keep this question in mind and engage with our conversation as Black nurse researchers, scholars, educators, and clinicians. The purpose of our conversation, and this article, is to explore the transactional impact of knowledge development pathways and Black faculty retention pathways on the state of health equity knowledge in (...) nursing today. Over a series of conversations, we discuss the research exploitation of communities of color, deficit research funding, knowledge capitalization, the marginalization of diversity as a continuous process, a lack of sociocultural authority, and our thoughts on solutions. We conclude by using the wisdom of a generation to answer our initial question. (shrink)

Health equity is increasingly identified as a principal goal to be achieved through public health policies and activities. However, what is to be measured in the assessment of health equity and how inequities in health ought to be redressed are among the pressing questions that must be answered if health equity is to serve as a meaningful and consistent ethical guide for measurement and intervention in public health. In this article I (...) argue that the concept of health equity, in the form it is predominantly found in public health, suffers from normative indeterminacy and is therefore unlikely to provide actionable normative guidance to public health policy-makers, practitioners and researchers. I argue that the concept of health equity, as it is commonly defined in public health, ultimately rests upon assumptions of a more fundamental, yet tacit, conception of justice to do its normative work. In this vein, I expand upon a critique of Margaret Whitehead’s oft-cited definition of health equity made by James Wilson to raise additional reasons not explored by Wilson, or others, as to why Whitehead’s definition remains inadequate in providing normative guidance to policy-makers, practitioners and researchers in public health. (shrink)

There is consistent and strong empirical evidence for social inequalities in health, as a vast and fast growing literature shows. In recent years, these findings have helped to move health equity high on international research and policy agendas. This paper examines how the empirical identification of social inequalities in health relates to a normative judgment about health inequities and puts forward an approach which embeds the pursuit of health equity within the general (...) pursuit of social justice. It defends an indirect approach to health equity, which views social inequalities in health as unjust in so far as they are the result of an unjust basic structure of society in Rawls’ sense. (shrink)

ABSTRACTDeveloping strategies to reduce inequities in health requires an understanding of how inequities occur, determining the salient factors in their production, and deciding which ones are most amenable to change. The recognition of several principles regarding the manifestations and genesis of inequities can help to decide on strategies. In making decisions, it is important to consider whether the aim is to reduce disparities in the occurrence of ill health or to reduce disparities in the severity of ill (...) class='Hi'>health. Evidence shows that the major impact on equity of health services, particularly regarding their potential to reduce severity, is attributable to the strength of primary care resources and services in communities and countries. Virtually every influence on the genesis of inequities is determined by the political context in which policy is made. The issue of health services is not different in this regard from other types of strategies.There is no longer any doubt about the pervasive influence of social factors on health. Almost two centuries of descriptive research provides convincing evidence of associations between social structures and relationships and health status in all countries and in all societies; if there is anything new from more recent research, it is that the association is not limited to differences between the lowest social strata and other social strata. Rather, the association is noted throughout the social spectrum. That is, there is a social gradient in health such that, for many if not most manifestations of ill health, the lower the social stratum, the worse the health.The challenge for the future is to understand why this is the case, to create a consensus that these inequalities are unnecessary and unacceptable, and to devise strategies that are both effective and possible. This paper will focus on the first of these aims, in a context that facilitates attention to the second and third aims. (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)

Galasso (2024) provides a strong critique of precision medicine research initiatives regarding their potential for the exclusion of populations based on upstream and downstream factors with “Genomi...

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)

Health research has been identified as a vehicle for advancing global justice in health. However, in bioethics, issues of global justice are mainly discussed within an ongoing debate on the conditions under which international clinical research is permissible. As a result, current ethical guidance predominantly links one type of international research (biomedical) to advancing one aspect of health equity (access to new treatments). International guidelines largely fail to connect international research to promoting (...) broader aspects of health equity – namely, healthier social environments and stronger health systems. Bioethical frameworks such as the human development approach do consider how international clinical research is connected to the social determinants of health but, again, do so to address the question of when international clinical research is permissible. It is suggested that the narrow focus of this debate is shaped by high-income countries' economic strategies. The article further argues that the debate's focus obscures a stronger imperative to consider how other types of international research might advance justice in global health. Bioethics should consider the need for non-clinical health research and its contribution to advancing global justice. (shrink)

Global health research partnerships are increasingly taking the form of consortia of institutions from high-income countries and low- and middle-income countries that undertake programs of research. These partnerships differ from collaborations that carry out single projects in the multiplicity of their goals, scope of their activities, and nature of their management. Although such consortia typically aim to reduce health disparities between and within countries, what is required for them to do so has not been clearly defined. (...) This article takes a conceptual approach to explore how the governance of transnational global health research consortia should be structured to advance health equity. To do so, it applies an account called shared health governance to derive procedural and substantive guidance. A checklist based on this guidance is proposed to assist research consortia determine where their governance practices strongly promote equity and where they may fall short. (shrink)

There is much discourse and focus on the social determinants of health, but undergirding these multiple intersecting and interacting determinants are legal and political determinants that have operated at every level and impact the entire life continuum. The United States has long grappled with advancing health equity via public law and policy. Seventy years after the country was founded, lawmakers finally succeeded in passing the first comprehensive and inclusive law aimed at tackling the social determinants of (...) class='Hi'>health, but that effort was short-lived. Today the United States is faced with another fork in the road relative to the advancement of health equity. This article draws on lessons from history and law to argue that researchers, providers, payers, lawmakers and the legal community have a moral, economic and national security imperative to address not only the negative outcomes of health disparities, but also the imbalance of inputs resulting from laws and policies which fail to employ an equity lens. (shrink)

Wearable devices are increasingly present in the health context, as tools for biomedical research and clinical care. In this context, wearables are considered key tools for a more digital, personalised, preventive medicine. At the same time, wearables have also been associated with issues and risks, such as those connected to privacy and data sharing. Yet, discussions in the literature have mostly focused on either technical or ethical considerations, framing these as largely separate areas of discussion, and the contribution (...) of wearables to the collection, development, application of biomedical knowledge has only partially been discussed. To fill in these gaps, in this article we provide an epistemic (knowledgerelated) overview of the main functions of wearable technology for health: monitoring, screening, detection, and prediction. On this basis, we identify 4 areas of concern in the application of wearables for these functions: data quality, balanced estimations, health equity, and fairness. To move the field forward in an effective and beneficial direction, we present recommendations for the 4 areas: local standards of quality, interoperability, access, and representativity. (shrink)

Much innovation has taken place in the development of medical schools and licensure exam processes across the African continent. Still, little attention has been paid to education that enables the multidisciplinary, critical thinking needed to understand and help shape the larger social systems in which health care is delivered. Although more than half of medical schools in Canada, the United Kingdom, and the United States offer at least one medical humanities course, this is less common in Africa. We report (...) on the “liberal arts approach” to medical curricula undertaken by the University of Global Health Equity beginning in 2019. The first six-month semester of the curriculum, called Foundations in Social Medicine, includes courses in critical thinking and communication, African history and global political economy, medical anthropology and social medicine, psychology and health, gender and social justice, information technology and health, and community-based training. Additionally, an inquiry-based pedagogy with relatively small classes is featured within an overall institutional culture that emphasizes health equity. We identify key competencies for physicians interested in pursuing global health equity and how such competencies relate to liberal arts integration into the African medical school curriculum and pedagogical approach. We conclude with a call for a research agenda that can better evaluate the impact of such innovations on physicians’ education and subsequent practices. (shrink)

Hastings Center Report, Volume 52, Issue S1, Page S39-S41, March‐April 2022.

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 (...) class='Hi'>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)

Reducing inequalities in health and the determinants of health is a widely acknowledged health policy goal, and methods for measuring inequalities and inequities in health are well developed. Yet, the evidence base is weak for how to achieve these goals. There is a lack of high-quality randomised controlled trials reporting impact on the distribution of health and non-health benefits and lack of methodological rigour in how to design, power, measure, analyse and interpret distributional impact (...) in RCTs. Our overarching aim in this paper is to contribute to the emerging effort to improve transparency and coherence in the theoretical and conceptual basis for RCTs on effective interventions to reduce health inequity. We endeavour to achieve this aim by pursuing two more specific objectives. First, we propose an overview of three broader health equity frameworks and clarify their implications for the measurement of health inequality in RCTs. Second, we seek to clarify the relationship between theory and translational challenges that researchers would need to attend to, in order to ensure that equity-relevant RCTs are coherently grounded in theory. (shrink)

In this manuscript, “Intersectional Structural Stigma, Community Priorities, and Opportunities for Transgender Health Equity,” Poteat and Simmons outline the legal and policy barriers that impede efforts to end the HIV epidemic among transgender people in the South. They present qualitative and quantitative data from a community engaged research study conducted with transgender adults and other key stakeholders as well as finding from an analysis of policies impacting transgender people in both states. Violence prevention and decriminalization are highlighted (...) as key policy initiatives that would advance health equity for transgender people. (shrink)

Cultural values influence how people understand illness and dying, and impact their responses to diagnosis and treatment, yet end-of-life care is rooted in white, middle class values. Faith, hope, and belief in God’s healing power are central to most African Americans, yet life-preserving care is considered “aggressive” by the healthcare system, and families are pressured to cease it.

COVID-19 vaccination of children has begun in various high-income countries with regulatory approval and general public support, but largely without careful ethical consideration. This trend is expected to extend to other COVID-19 vaccines and lower ages as clinical trials progress. This paper provides an ethical analysis of COVID-19 vaccination of healthy children. Specifically, we argue that it is currently unclear whether routine COVID-19 vaccination of healthy children is ethically justified in most contexts, given the minimal direct benefit that COVID-19 vaccination (...) provides to children, the potential for rare risks to outweigh these benefits and undermine vaccine confidence, and substantial evidence that COVID-19 vaccination confers adequate protection to risk groups, such as older adults, without the need to vaccinate healthy children. We conclude that child COVID-19 vaccination in wealthy communities before adults in poor communities worldwide is ethically unacceptable and consider how policy deliberations might evolve in light of future developments. (shrink)

Patients in around 20 countries worldwide are now offered online access to at least some of their medical records. Access includes test results, medication lists, referral information, and/or the very words written by clinicians (so-called ‘open notes’). In this paper, I discuss the possibility of one unintended negative consequence of patient access to their clinical notes—the potential to increase ‘nocebo effects’. A growing body of research shows that nocebo effects arise by engaging perceptual and cognitive processes that influence negative (...) expectancies, and as a consequence, adverse health effects. Studies show that increased awareness about the side effects of medications, the framing of information and the socioemotional context of care can increase the risk of nocebo effects. Connecting research into the nocebo effect with open notes provides preliminary support for the hypothesis that patient access to clinical notes might be a forum for facilitating unwanted nocebo effects. Furthermore, current findings indicate that we might expect to see systematic differences in how nocebo effects are experienced among different patient populations. The ethical implications of the tension between transparency and the potential for harm are discussed, with an emphasis on what open notes might mean for justice and equity in clinical care for a range of already marginalised patient populations. I argue that to resolve these challenges does not thereby justify ‘closed notes’, and conclude with suggestions for how health systems and clinicians might adapt to this innovation to reduce the risk of potential nocebo effects arising via this novel route. (shrink)

I am grateful for the variety of feedback. Three themes struck me: first, commentators recognised the value of open notes but underlined the importance of exploring unintended consequences of the innovation particularly for already disadvantaged populations; second, they suggested nocebo effects might arise via additional routes not identified in my paper; third, they signalled the need for further empirical and ethical exploration of nocebo effects. Exploring all three issues and offering a commentary that was equal parts intriguing and perturbing, Chang (...) and Torous proposed nocebo effects and other harms might be ubiquitous in the digital health space. 1 For example, they hypothesised that the preoccupation with checking health tracking data including adverse readings or outcomes available via downloadable apps and wearable devices might induce nocebo effects. This supposition is worthy of further scrutiny. Chang and Torous also highlighted the lack of research into potentially disparate effects of digital... (shrink)

In this paper we report findings from a commissioned report to the COVID-19 Clinical Research Coalition on approaches to streamline multinational REC review/approval during public health emergencies. As currently envisioned in the literature, a system of REC mutual recognition is theoretically possible based on shared procedural REC standards, but raises numerous concerns about perceived inequities and mistrust.

Achieving equity in international research is one of the pressing concerns of the twenty-first century. In this era of progressive globalization, there are many opportunities for the deliberate or accidental export of unethical research practices from high-income regions to low- and middle-income countries and emerging economies. The export of unethical practices, termed “ethics dumping,” may occur through all forms of research and can affect individuals, communities, countries, animals, and the environment. Ethics dumping may be the result (...) of purposeful exploitation but often arises from lack of awareness of good ethical and governance practice. This chapter describes the work of the TRUST project toward counteracting the practice of ethics dumping through the development of tools for the improvement of research governance structures. Multi-stakeholder consultation informs all of TRUST’s developments. Most importantly, this gives voice to marginalized vulnerable groups and indigenous people, who have been equal and active partners throughout the project. At the heart of the TRUST project is an ambitious aim to develop a Global Code of Conduct for Research in Resource-Poor Settings. Uniquely, the Code provides guidance across all research disciplines in clear, short statements, focusing on research collaborations that entail considerable imbalances of power, resources and knowledge and using a new framework based on the values of fairness, respect, care, and honesty. The code was recently adopted by the European Commission as a reference document for Horizon 2020 and Horizon Europe. (shrink)

It is clear that where a disease affects men and women differently, research on potential therapies or cures should include both men and women and should examine whether the therapy is effective and safe for both sexes. In this paper we consider whether there is an appropriate role for law in regulating to ensure an examination of these sex- and gender-specific aspects in health research. We consider the relative advantages and disadvantages of pursuing a regulatory approach to (...) achieving gender equity in the field of women’s health by exploring first, the meaning of gender equity, and second, the regulatory mechanisms that might be best suited to promoting the goal of gender equity. Within our examination of different regulatory forms and mechanisms, we also interrogate the shift from gender-neutral provisions relating to sex in favor of generalized notions of fairness that remove any specific consideration of sex. (shrink)

Inequities in health and health care are one of the greatest challenges facing the international community today. This problem raises serious questions for health care planners, politicians and ethicists alike. The major world religions can play an important role in this discussion. Therefore, interreligious dialogue on this topic between ethicists and health care professionals is of increasing relevance and urgency. This article gives an overview on the positions of Islam and Christianity on equity and the (...) distribution of resources in health care. It has been written in close collaboration and constant dialogue between the two authors coming from the two religions. Although there is no specific concept for the modern term equity in either of the two religions, several areas of agreement have been identified: All human beings share the same values and status, which constitutes the basis for an equitable distribution of rights and benefits. Special provisions need to be made for the most needy and disadvantaged. The obligation to provide equitable health services extends beyond national and religious boundaries. Several areas require intensified research and further dialogue: the relationship between the individual and the community interms of rights and responsibilities, how to operationalize the moral duty to decrease global inequalities in health, and the understanding and interpretation of human rights in regard to social services. (shrink)

Efficiency and equity are central concepts for the normative assessment of health policy. Drawing on the work of academic philosophers and philosophically sophisticated economists, this article identifies important philosophical questions implicated by the notions of efficiency and equity and then summarizes influential answers to them. Promising avenues for further philosophical research are also highlighted, especially in the context of health equity and its elusive ethical foundations.

I Several years ago, when the Carter administration announced that it would support congressional action to end the public fund ing of abortions, the President was asked at a press conference whether he thought that such a policy was unfair; he responded, "Life is unfair." His remarks provoked a storm of controversy. For other than those who, for principled reasons, opposed abor tion on any grounds, it seemed that the President's comments were cruel, violating what was thought to be an (...) American com mitment to providing equal access to health services to all citi zens, regardless of their capacity to pay. Those sentiments had, in fact, been reflected in public opinion polls that had, for at least three decades, indicated that Americans supported the propo sition that the government should guarantee health care to all. Ultimately, those beliefs had been translated into the oft-ex 1 pressed political demand for a one-class system of health care. This commitment to equality is rather remarkable. American society evidences a striking willingness to tolerate vast inequal ities with regard to income and wealth. While it guarantees ed ucation to all children, there is not even a pretense that the children of the wealthy and the children of the poor ought to get precisely the same kind of schooling. While some commitment 'Hazel Erskine. "The Polls: Health Insurance," Public Opinion Quarterly, XXXIX (Spring, 1975), 128-143. (shrink)

Recent studies highlight the need for ethical and equitable digital health research that protects the rights and interests of racialized communities. We argue for practices in digital health that promote data self-determination for these communities, especially in data collection and management. We suggest that researchers partner with racialized communities to curate data that reflects their wellness understandings and health priorities, and respects their consent over data use for policy and other outcomes. These data governance approach honors (...) and builds on Indigenous Data Sovereignty (IDS) decolonial scholarship by Indigenous and non-indigenous researchers and its adaptations to health research involving racialized communities from former European colonies in the global South. We discuss strategies to practice equity, diversity, inclusion, accessibility and decolonization (EDIAD) principles in digital health. We draw upon and adapt the concept of Precision Health Equity (PHE) to emphasize models of data sharing that are co-defined by racialized communities and researchers, and stress their shared governance and stewardship of data that is generated from digital health research. This paper contributes to an emerging research on equity issues in digital health and reducing health, institutional, and technological disparities. It also promotes the self-determination of racialized peoples through ethical data management. (shrink)

This article draws attention to the limited amount of scholarship on what constitutes fairness and equity in resource allocation to health research by individual funders. It identifies three key decisions of ethical significance about resource allocation that research funders make regularly and calls for prioritizing scholarship on those topics – namely, how health resources should be fairly apportioned amongst public health and health care delivery versus health research, how health (...) class='Hi'>research resources should be fairly allocated between health problems experienced domestically versus other health problems typically experienced by disadvantaged populations outside the funder's country, and how domestic and non-domestic health research funding should be further apportioned to different areas, e.g. types of research and recipients. These three topics should be priorities for bioethics research because their outcomes have a substantial bearing on the achievement of health justice. The proposed agenda aims to move discussion on the ethics of health research funding beyond its current focus on the mismatch between worldwide basic and clinical research investment and the global burden of disease. Individual funders’ decision-making on whether and to what extent to allocate resources to non-domestic health research, health systems research, research on the social determinants of health, capacity development, and recipients in certain countries should also be the focus of ethical scrutiny. (shrink)

Situating medical and scientific research within a framework or theory of social justice is long overdue. Attempting to extend principles of research ethics beyond the clinic and lab to other affected people or consequences tolerates or obfuscates injustice. While it must be done, the timescales, methodologies, and commitment to real-world impact are quite different in research ethics versus political philosophy.

Background Despite the growth of biomedical research in South Africa, there are few insights into the operation of Research Ethics Committees (RECs) in this setting. We investigated the composition, operations and training needs of health RECs in South Africa against the backdrop of national and international guidelines. Methods The 12 major health RECs in South Africa were surveyed using semi-structured questionnaires that investigated the composition and functions of each REC as well as the operational issues facing (...) committees. Results Health RECs in SA have an average of 16 members and REC members are predominantly male and white. Overall, there was a large discrepancy in findings between under-resourced RECs and well resourced RECs. The majority of members (56%) are scientists or clinicians who are typically affiliated to the same institution as the health REC. Community representatives account for only 8% of membership. Training needs for health REC members varied widely. Conclusion Most major health RECs in South Africa are well organized given the resource constraints that exist in relation to research ethics in developing countries. However, the gender, racial and occupational diversity of most of these RECs is suboptimal, and most RECs are not constituted in accordance with South African guidelines. Variability in the operations and training needs of RECs is a reflection of apartheid-entrenched influences in tertiary education in SA. While legislation now exists to enforce standardization of research ethics review systems, no provision has been made for resources or capacity development, especially to support historically-disadvantaged institutions. Perpetuation of this legacy of apartheid represents a violation of the principles of justice and equity. (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)

Objectives The study uses a qualitative empirical method to define Health Research for Development. This project explores the perspectives of stakeholders in an international health research partnership operating in Ghana and Tanzania. Methods We conducted 52 key informant interviews with major stakeholders in an international multicenter partnership between GlaxoSmithKline and the global health nonprofit organisation PATH and its Malaria Vaccine Initiative program,. The respondents included teams from four clinical research centres and various collaborating partners. (...) This paper analyses responses to the question: What is Health Research for Development? Results Based on the stakeholders’ experience the respondents offered many ways of defining Health Research for Development. The responses fell into four broad themes: i) Equitable Partnerships; ii) System Sustainability; iii) Addressing Local Health Targets, and iv) Regional Commitment to Benefit Sharing. Conclusion Through defining Health Research for Development six key learning points were generated from the four result themes: 1) Ensure there is local research leadership working with the collaborative partnership, and local healthcare system, to align the project agenda and activities with local research and health priorities; 2) Know the country-specific context - map the social, health, legislative and political setting; 3) Define an explicit development component and plan of action in a research project; 4) Address the barriers and opportunities to sustain system capacity. 5) Support decentralised health system decision-making to facilitate the translation pathway; 6) Govern, monitor and evaluate the development components of health research partnerships. Overall, equity and unity between partners are required to deliver health research for development. (shrink)

In a previous issue of Zygon (Carvalho 2007), I explored the role of scientists—especially those engaging the science-religion dialogue—within the arena of global equity health, world poverty, and human rights. I contended that experimental biologists, who might have reduced agency because of their professional workload or lack of individual resources, can still unite into collective forces with other scientists as well as human rights organizations, medical doctors, and political and civic leaders to foster progressive change in our world. (...) In this article, I present some recent findings from research on three emerging viruses—HIV, dengue, and rotavirus—to explore the factors that lead to the geographical expansion of these viruses and the increase in frequency of the infectious diseases they cause. I show how these viruses are generating problems for geopolitical stability, human rights, and equity health care for developing nations that are already experiencing a growing poverty crisis. I suggest some avenues of future research for the scientific community for the movement toward resolution of these problems and indicate where the science-religion field can be of additional aid. (shrink)

Abstract.In a previous issue of Zygon (Carvalho 2007), I explored the role of scientists—especially those engaging the science‐religion dialogue—within the arena of global equity health, world poverty, and human rights. I contended that experimental biologists, who might have reduced agency because of their professional workload or lack of individual resources, can still unite into collective forces with other scientists as well as human rights organizations, medical doctors, and political and civic leaders to foster progressive change in our world. (...) In this article, I present some recent findings from research on three emerging viruses—HIV, dengue, and rotavirus—to explore the factors that lead to the geographical expansion of these viruses and the increase in frequency of the infectious diseases they cause. I show how these viruses are generating problems for geopolitical stability, human rights, and equity health care for developing nations that are already experiencing a growing poverty crisis. I suggest some avenues of future research for the scientific community for the movement toward resolution of these problems and indicate where the science‐religion field can be of additional aid. (shrink)

The COVID-19 pandemic posed many ethical and practical challenges for academic research. Some of these have been documented, particularly in relation to health research, but less attention has been paid to the dilemmas encountered by educational and social science research. Given that pandemics are predicted to be more frequent, it is vital to understand how to continue crucial research in schools and other learning communities. This article therefore focuses specifically on research ethics in educational (...) and social science during the pandemic of 2020–2022. The research involved interviews and workshops with University College London (UCL) academics, professional staff and graduate students and encompassed those involved in reviewing ethics applications, researchers dealing with ethics in projects that continued despite disruptions caused by COVID-19, and successful research projects specifically designed to study the effects of COVID-19 in various contexts. The article discusses some of the crucial knowledge and practical experiences that were accumulated. The operational and epistemological lessons learned from this particular institution may have wider relevance to research ethics processes in higher education environments where academics and students are grappling with post-COVID-19 ethical dilemmas and inform broader debates about how research institutions can build institutional knowledge to improve practices of ethics review at the times of health emergencies in future. Our evidence points to the significance of inter- and multidisciplinary, collaborative approaches that flatten institutional hierarchies and to the crucial role played by professional staff. In addition, we argue that ethics review processes must be underpinned by critical debates about wider issues of unequal power relationships between research partners, the nature of knowledge production, ownership and utilisation. To enhance equity and epistemic justice in research practices, ethics education should be an ongoing integral part of research ethics within research institutions. (shrink)

How international research might contribute to justice in global health has not been substantively addressed by bioethics. Theories of justice from political philosophy establish obligations for parties from high-income countries owed to parties from low and middle-income countries. We have developed a new framework that is based on Jennifer Ruger's health capability paradigm to strengthen the link between international clinical research and justice in global health. The ‘research for health justice’ framework provides direction (...) on three aspects of international clinical research: the research target, research capacity strengthening, and post-trial benefits. It identifies the obligations of justice owed by national governments, research funders, research sponsors, and investigators to trial participants and host communities. These obligations vary from those currently articulated in international research ethics guidelines. Ethical requirements of a different kind are needed if international clinical research is to advance global health equity. (shrink)

Research Ethics, Volume 18, Issue 2, Page 126-131, April 2022. Engaging citizens and patients in research has become a truism in many fields of health research. It is now seen as a laudable—if not compulsory—activity in research for yielding more impactful and meaningful citizen/patient outcomes and steering research in the right direction. Although this research approach is increasingly common and commendable, we recently encountered a major obstacle in obtaining an ethics certificate from an (...) institutional review board to conduct a study that places citizen/patient perspectives on equal footing with those of academic/policy experts. The obstacle was the interpretation of fairness in terms of compensation for research participation. In terms of research ethics, this raised an important question: Should all types of participants be compensated equally, or should exceptions be made for citizen/patient participants? We argue that there are good reasons for exceptionalism and that clearer guidance on citizen/patient engagement in research should be embedded into research ethics doctrine. (shrink)

This paper contends that a research ethics approach to the regulation of health data research is unhelpful in the era of population‐level research and big data because it results in a primary focus on consent (meta‐, broad, dynamic and/or specific consent). Two recent guidelines – the 2016 WMA Declaration of Taipei on ethical considerations regarding health databases and biobanks and the revised CIOMS International ethical guidelines for health‐related research involving humans – both focus (...) on the growing reliance on health data for research. But as research ethics documents, they remain (to varying degrees) focused on consent and individual control of data use. Many current and future uses of health data make individual consent impractical, if not impossible. Many of the risks of secondary data use apply to communities and stakeholders rather than individual data subjects. Shifting from a research ethics perspective to a public health lens brings a different set of issues into view: how are the benefits and burdens of data use distributed, how can data research empower communities, who has legitimate decision‐making capacity? I propose that a public health ethics framework – based on public benefit, proportionality, equity, trust and accountability – provides more appropriate tools for assessing the ethical uses of health data. The main advantage of a public health approach for data research is that it is more likely to foster debate about power, justice and equity and to highlight the complexity of deciding when data use is in the public interest. (shrink)

The COVID-19 pandemic laid bare systemic inequities shaped by social determinants of health (SDoH). Public health agencies, legislators, health systems, and community organizations took notice, and there is currently unprecedented interest in identifying and implementing programs to address SDoH. This special issue focuses on the role of medical-legal partnerships (MLPs) in addressing SDoH and racial and social inequities, as well as the need to support these efforts with evidence-based research, data, and meaningful partnerships and funding.