Public-private partnerships are established to specifically harness the potential of Big Data in healthcare and can include partners working across the data chain—producing health data, analysing data, using research results or creating value from data. This domain paper will illustrate the challenges that arise when partners from the public and private sector collaborate to share, analyse and use biomedical Big Data. We discuss three specific challenges for PPPs: working within the social licence, public antipathy to (...) the commercialisation of public sector health data, and questions of ownership, both of the data and any resulting intellectual property or products. As a specific example we consider the case of the UK National Health Service providing patient data to Google’s DeepMind AI program to develop a diagnostic app for kidney disease. This article is an application of the framework presented in this issue of ABR. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. We use four specific values to help analysis these issues: public benefit, stewardship, transparency and engagement. We demonstrate how the Deliberative Framework can support ethical governance of PPPs involving biomedical big data. (shrink)

Public health ethics is emerging as a new field of inquiry, distinct not only from public health law, but also from traditional medical ethics and research ethics. Public health professional and scholarly attention is focusing on ways that ethical analysis and a new public health code of ethics can be a resource for health professionals working in the field. This article provides a preliminary exploration of the ethical issues faced by (...) class='Hi'>public health professionals in day-to-day practice and of the type of ethics education and support they believe may be helpful. (shrink)

In the ambitious new book The Perils of Partnership: Industry Influence, Institutional Integrity, and Public Health, Jonathan Marks argues that far too much baggage is being piled on an old workhorse, conflict of interest. It’s an important concept, he asserts, but public‐sector actors can transgress their ethical obligations even when their relations with industry don’t create conflicts of interest. Yet policy‐makers have been immersed in public‐private partnerships for so long that they do not see the (...) broader implications of such relationships. Marks aims to move the discourse from reassuring terms like “engagement” and “inclusiveness” to concepts that capture the problematic side of the liaisons, like “webs of influence” and “agenda distortion.” Above all, he issues a challenge to public health policy‐makers: Ditch the comfortable hand‐in‐hand industry relationships, which prioritize efficacy over ethics, threatening both the public’s health and the integrity of public health institutions. Adopt instead a paradigm that is “mano a mano,” involving tension, struggle, and, at times, direct conflict with private industry. (shrink)

Public health ethics is emerging as a new field of inquiry, distinct not only from public health law, but also from traditional medical ethics and research ethics. Public health professional and scholarly attention is focusing on ways that ethical analysis and a new public health code of ethics can be a resource for health professionals working in the field. This article provides a preliminary exploration of the ethical issues faced by (...) class='Hi'>public health professionals in day-to-day practice and of the type of ethics education and support they believe may be helpful. (shrink)

The issue of public health ethics has received much attention in recent years and is seen as a new field, distinct from medical ethics. Faculty from the University of Virginia, Johns Hopkins School of Public Health, Georgetown University, the University of Minnesota, and others received a grant from the Greenwall Foundation to examine this new field of public health ethics and identify the unique principles that distinguish it from the study of medical ethics. In (...) the course of that study, which included exploring the field with public health practitioners, a number of distinguishing ethical principles emerged. The moral principles appropriate for public health officials included producing benefits; avoiding, preventing and removing harms; producing a maximum balance of benefits over harms; and distributing benefits and burdens fairly. (shrink)

The, Police Executive Research Forum is completing a major initiative that encourages police chiefs to formalize working relationships with emergency medical personnel. The effort is sponsored by the U.S. Department of Justice, Bureau of Justice Assistance as a demonstration with the goal of preventing recurring violence that eventually leads to homicide. The initiative originally involved a consortium of emergency room clinicians, emergency medical service personnel, as well as police executives. The collaboration initially focused on arguably preventable dimensions of domestic violence (...) and homicide. However, after “9/11” and the ensuing anthrax crisis, the project developed into a three-step draft interactive protocol for earlier police intervention in situations involving possible deaths and mass casualties. With this shift in the project, Police Executive Research Forum’s principal collaborators shifted from emergency clinicians to public health practitioners. (shrink)

This book offers a novel critique of public-private partnerships in public health. The author argues these relationships create webs of influence that undermine the integrity of public health agencies, and imperil public health. He makes a compelling case that the paradigm interaction between governments and corporations should be at arm's length: separation, not collaboration.

The, Police Executive Research Forum is completing a major initiative that encourages police chiefs to formalize working relationships with emergency medical personnel. The effort is sponsored by the U.S. Department of Justice, Bureau of Justice Assistance as a demonstration with the goal of preventing recurring violence that eventually leads to homicide. The initiative originally involved a consortium of emergency room clinicians, emergency medical service personnel, as well as police executives. The collaboration initially focused on arguably preventable dimensions of domestic violence (...) and homicide. However, after “9/11” and the ensuing anthrax crisis, the project developed into a three-step draft interactive protocol for earlier police intervention in situations involving possible deaths and mass casualties. With this shift in the project, Police Executive Research Forum’s principal collaborators shifted from emergency clinicians to public health practitioners. (shrink)

Until the recent spread of public-private partnerships, pharmaceutical firms had avoided research and development into neglected tropical diseases (NTDs). Because these are diseases that affect the poorest populations in developing regions, research and development initiatives have for the most part depended on the resources and expertise drawn from academia, international organizations, and intermittent state interventions in disease-endemic countries. Over the last few decades, however, public-private product development partnerships (PDPs) have been introducing new collaborative agreements in which (...) the existing resources and expertise combine with the those traditionally withheld by the pharmaceutical industry and global health NGOs. This paper explores recent transformations in the representation of NTDs by examining the shifting logic and spaces of knowledge production which the advent of PDPs has enabled. An analysis of two case studies focused on Chagas disease-related initiatives addresses recurring preoccupations in Science, Technology and Society studies as well as in critical analyses of PDPs: that is, the back-and-forth movement of the disease from being an object of scientific inquiry to a public health concern, and the legitimacy risks and material asymmetries entailed in global health PDPs. Both cases show that it is major global health stakeholders and experts in non-endemic countries, rather than transnational pharmaceutical firms, that exert the greatest influence upon these changing representations: PDPs attempt to expand the preexisting biomedical focus on NTDs by means of incorporating “real world” drug development preoccupations (which I term epistemic shifts), but they also combine their stated global humanitarian aim with security concerns about the diseases spreading to non-endemic, industrialized countries (which I term geographical shifts). (shrink)

“What’s the big deal?”The meaning of this interrogative depends on the inflection. From the mouths of proponents of public–private partnerships (PPPs) related to food and health, it asks—perhaps with some skepticism or bewilderment—what objections there could possibly be to public–private partnerships intended to address some of our most pressing public health challenges. This is due, in no small part, to the way such partnerships are often characterized by participants and proponents alike: they (...) are a “win–win–win,” for the public sector actor, for the private sector actor, and for the general public or relevant publics (often characterized as consumers).1 Posed by critics of PPPs, the question cynically .. (shrink)

Data access and data sharing are vital to advance medicine. A growing number of public private partnerships are set up to facilitate data access and sharing, as private and public actors possess highly complementary health data sets and treatment development resources. However, the priorities and incentives of public and private organizations are frequently in conflict. This has complicated partnerships and sparked public concerns around ethical issues such as trust, justice or privacy—in turn raising (...) an important problem in business and data ethics: how can ethical theory inform the practice of public and private partners to mitigate misaligned incentives, and ensure that they can deliver societally beneficial innovation? In this paper, we report on the development of the Swiss Personalized Health Network’s ethical guidelines for health data sharing in public private partnerships. We describe the process of identifying ethical issues and engaging core stakeholders to incorporate their practical reality on these issues. Our report highlights core ethical issues in health data public private partnerships and provides strategies for how to overcome these in the Swiss health data context. By agreeing on and formalizing ethical principles and practices at the beginning of a partnership, partners and society can benefit from a relationship built around a mutual commitment to ethical principles. We present this summary in the hope that it will contribute to the global data sharing dialogue. (shrink)

Systems thinking has emerged as a means of conceptualizing and addressing complex public health problems, thereby challenging more commonplace understanding of problems and corresponding solutions as straightforward explanations of cause and effect. Systems thinking tries to address the complexity of problems through qualitative and quantitative modeling based on a variety of systems theories, each with their own assumptions and, more importantly, implicit and unexamined values. To date, however, there has been little engagement between systems scientists and those working (...) in bioethics and public health ethics. The goal of this paper is to begin to consider what it might mean to combine systems thinking with public health ethics to solve public health challenges. We argue that there is a role for ethics in systems thinking in public health as a means of elucidating implicit assumptions and facilitating ethics debate and dialogue with key stakeholders. (shrink)

In this response to Jonny Anomaly’s ‘Is Obesity a Public Health Problem?’ I argue, contra the author that public health actually increases individuals’ abilities to choose actions that further their health goals, specifically in the case of obesity. The intractability of obesity as an individual medical problem combined with the health benefits of modest (5–10 per cent of body weight) weight loss suggest that public health measures helping people make small changes in (...) eating habits improve population health. I argue that such measures are available to public health via behavioral economic research and policy proposals from libertarian paternalists. I respond to author’s claim that obesity does not constitute a public health problem because: (i) it is not an epidemic and (ii) obesity reduction is not a public good. I argue that epidemic status is not required for classification as a public health problem, but that obesity does have the status of an epidemic. I also point out flaws in author’s reasoning about obesity, public health and social costs. I conclude by suggesting that public health, in partnership with stakeholders and other areas of government, is poised to help create conditions for modest weight loss and increased population health overall. (shrink)

Collaboration between the arts and health sectors is gaining momentum. Artists are contributing significantly to public health efforts such as vaccine confidence campaigns. Artists and the arts are well positioned to contribute to the social conditions needed to build trust in the health sector. Health professionals, organizations, and institutions should recognize not only the power that can be derived from the insights, artefacts, and expertise of artists and the arts to create the conditions that make (...) trust possible. The health sector must also recognize that, while it can gain much from partnership with artists, artists risk much—namely, the public's trust—when they are in such partnerships. This essay unpacks these claims and considers the care and ethical considerations that must be brought to these partnerships to yield constructive pathways for ethical collaboration as well as for both establishing public trust and continuing to hold the health care profession accountable for becoming more trustworthy. (shrink)

Research represents an essential component of the response to infectious disease outbreaks and to other public health emergencies, whether they are localised, of international concern, or global. Research conducted in such contexts also comes with particular ethics challenges, the awareness of which has significantly grown following the Ebola outbreak in West Africa, the Zika outbreak in Latin America and the COVID-19 pandemic. These challenges include the need for implementing meaningful community engagement with the researched communities, not just to (...) build unidirectional trust towards the research team, but to achieve a genuine and mutually respectful partnership before, during and after the research. Here, we describe the real-life experience of 10 well-established research clinics in Nairobi, where a successful experience of community engagement linking prevention and care to research was interrupted during the COVID19 pandemic. We contrast this experience with the concept and processes of community engagement as described in selected scientific manuscripts and guidelines, to formulate some conclusions and recommendations. We contend that more action is needed, from research ethics committees and other key-research stakeholders, to align policies and practices with ethics guidance and with evidence-based recommendations from the academic literature, to achieve meaningful community engagement during emergency research, irrespective of the scale and location of an outbreak or public health crisis. Failure to do so, will aggravate the (postcolonial) asymmetries of power in global health and local systems. (shrink)

For global health academics and practitioners, it can feel as though we are living in a tyranny of partnerships. The primary trappings of professional success in global health—funding and publications—increasingly rely on the presence or absence of institutional partnerships. Funders often require letters of support from collaborators, and the literature routinely lauds partnerships as the "secret sauce" necessary to solve intractable problems. Commonly, the term describes relationships between entities in the Global North and the Global (...) South, serving as a euphemism for relationships that, at their core, are premised on a transfer of resources from the former to the latter. Many partnerships... (shrink)

In the fall of 2001, the need for a vigorous and effective public health system became more apparent than it had been for many decades. With the advent of the first widescale bioterrorist attack on the United States, the government's obligation to respond and take steps to protect the public health became self-evident.Also obvious was the need for of an effective partnership between federal, state, and local officials. Local officials are almost always on the front lines (...) of the struggle against bioterrorism. They are the first to recognize a suspicious case and to provide testing and treatment for the affected population. At the same time, state officials are needed to support and coordinate local efforts, providing an expertise that may be lacking in many communities, especially smaller ones.But few would doubt that the federal government has a key role to play. The Centers for Disease Control and Prevention is expected to lead the epidemiological investigation and provide expertise on how to cope with diseases that remain unfamiliar to most physicians. (shrink)

In the fall of 2001, the need for a vigorous and effective public health system became more apparent than it had been for many decades. With the advent of the first widescale bioterrorist attack on the United States, the government's obligation to respond and take steps to protect the public health became self-evident.Also obvious was the need for of an effective partnership between federal, state, and local officials. Local officials are almost always on the front lines (...) of the struggle against bioterrorism. They are the first to recognize a suspicious case and to provide testing and treatment for the affected population. At the same time, state officials are needed to support and coordinate local efforts, providing an expertise that may be lacking in many communities, especially smaller ones.But few would doubt that the federal government has a key role to play. The Centers for Disease Control and Prevention is expected to lead the epidemiological investigation and provide expertise on how to cope with diseases that remain unfamiliar to most physicians. (shrink)

Pharmaceutical companies developed Covid-19 vaccines in record time. However, it soon became apparent that global access to the vaccines was inequitable. Through a qualitative inquiry as the pandemic unfolded (to mid-2021), we provide an in-depth analysis of why companies engaged with the Covid-19 Vaccines Global Access Facility (COVAX), identifying the internal (to the company) and external factors that facilitated or impeded engagement. While all producers of the World Health Organization (WHO)-approved vaccines engaged with COVAX, our analysis highlights the differential (...) levels of COVAX engagement and identifies contractual obligations, opportunities and company strategy, and reputational pressures as key explanatory factors. We discuss our empirical findings relative to the literature on political corporate social responsibility (PCSR). Accordingly, we question whether pharmaceutical companies lived up to their responsibilities as corporate citizens and conclude that they failed to fulfill the implied responsibility of combating inequitable vaccine distribution. We conclude with implications of our research for practice, in relation to the challenges of global access to Covid-19 vaccines and for access to medicines more generally. (shrink)

With dwindling support from governments toward universities, university–industry partnerships have increased. Ethical concerns over such partnerships have been documented, are particularly relevant when an institution receives money from a corporation whose products do harm and are intensified for academic public health institutions whose missions include promoting well-being. Academics in medicine and nutrition have often failed to recognize the potential conflicts of industry-sponsored research. It is unclear if research to date has explored attitudes of public (...) class='Hi'>health academics toward accepting such funds. The objective of this research was to review systematically the attitudes of public health academics with respect to accepting funds from for-profit corporations. Four electronic databases were searched as well as the archives of the Chronicles of Higher Education. The search strategy was based on four main domains: for-profit organizations, funding, public health and academia. This search resulted in a total of 4017 articles reviewed. No articles were found that investigated the attitudes of public health academics toward accepting funds from industry. The lack of articles addressing public health academicians’ perspective toward accepting industry funds is striking. Research regarding this topic can guide development of policies that minimize the negative consequences of industry funding. (shrink)

Increases in international travel and migratory flows have enabled infectious diseases to emerge and spread more rapidly than ever before. Hence, it is increasingly easy for local infectious diseases to become global infectious diseases (GIDs). National governments must be able to react quickly and effectively to GIDs, whether naturally occurring or intentionally instigated by bioterrorism. According to the World Health Organisation, global partnerships are necessary to gather the most up-to-date information and to mobilize resources to tackle GIDs when (...) necessary. Communicable disease control also depends upon national public health laws and policies. The containment of an infectious disease typically involves detection, notification, quarantine and isolation of actual or suspected cases; the protection and monitoring of those not infected; and possibly even treatment. Some measures are clearly contentious and raise conflicts between individual and societal interests. In Europe national policies against infectious diseases are very heterogeneous. Some countries have a more communitarian approach to public health ethics, in which the interests of individual and society are more closely intertwined and interdependent, while others take a more liberal approach and give priority to individual freedoms in communicable disease control. This paper provides an overview of the different policies around communicable disease control that exist across a select number of countries across Europe. It then proposes ethical arguments to be considered in the making of public health laws, mostly concerning their effectiveness for public health protection. (shrink)

This article describes implementation of a longitudinal curriculum in public health law, building on doctrinal coursework with skills-based coursework and opportunities for interdisciplinary, community-based engagement and service learning. It specifically describes development of a Policy Practicum, giving an example of how law students can learn policy skills and skills of effective community coalition work through a healthy homes partnership, highlighting areas where the curriculum can incorporate interdisciplinary education. It offers lessons learned during the curriculum-building process, and concludes with (...) a more intensive service-learning strategy through the development of a Policy Lab. (shrink)

The RWJF public health law faculty fellowship provided an opportunity for legal and public health scholars to come together to develop innovative approaches for teaching public health law in schools of law, public health, medicine, and social work nationally. The fellowship program emphasized the importance of integrating individual change with organizational change as twin pillars of the core competencies necessary for advancing public health law education. This article describes the curriculum (...) and learning formats used throughout the fellowship to guide the fellows' development in the areas of leading change, managing conflict, building collaborative partnerships, and maintaining personal resilience. (shrink)

In 1997 President Clinton apologized to the survivors of the U.S. Public Health Service Syphilis Study. Since then, two of his recommendations have received little attention. First, he emphasized the need to remember the shameful past so we can build a better future for racial'ethnic minority populations. Second, he directed the creation in partnership with higher education to prepare training materials that would instruct biomedical researchers on the application of ethical principles to research with racial/ethnic minority populations. This (...) article proposes the inclusion of these issues in the implementation of the Affordable Care Act. It asks, What is the right or good thing to do? What are our obligations to one another? Two challenges are examined: (a) Conducting research with African Americans without knowledge of bioethics specific to this population, and (b) the ethical dilemma of conducting research that does not adequately take into account the diversity within the Black population that is a contributing factor in health disparities. Training and policy recommendations responsive to President Clinton's Apology are presented. (shrink)

This article highlights and evaluates the role of CEPI and its contribution to global equitable access to COVID-19 vaccines through its established partnerships for vaccine development. The article adds to the understanding of how and when such partnerships can work for public health, especially under emergency citations.

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. (shrink)

The upstream framework presented in public health and medicine considers health problems from a preventive perspective, seeking to understand and address the root causes of poor health. Medical-legal partnerships (MLPs) have demonstrated the value of this upstream framework in the practice of law and engage in upstream lawyering by utilizing systemic advocacy to address root causes of injustices and health inequities. This article explores upstreaming and its use by MLPs in reframing legal practice.

Cross-sector development partnerships are project-based collaborative arrangements between business, government, and civil society organizations in support of international development goals such as sustainability, health education, and economic development. Focusing on public private partnerships in development cooperation, we examine different constellations of bridging agents and their effects in the formation of single CSDP projects and longer-term alliances. We conceptualize bridging agency as a collective process involving both internal partner representatives and external intermediaries in initiating and/or supporting roles. (...) We find that the involvement of external intermediaries eases the formation of single projects and longer-term alliances. However, when projects are initiated by external intermediaries they tend to be repetitive and narrow in scope, whereas projects initiated by internal partner representatives often explore novel agendas and embody a greater potential for social innovation. Yet, the longer-term pursuit of these agendas beyond single projects may require external intermediaries in supporting roles. Findings help better understand micro-processes and collective practices of brokerage and alliance formation in transnational governance contexts and beyond. (shrink)

Global health conceives the notion of partnership between North and South as central to the foundations of this academic field. Indeed, global health aspires to an equal positioning of Northern and Southern actors. While the notion of partnership may be used to position the field of global health morally, this politicization may mask persisting inequalities in global health. In this paper, we reflect on global health partnerships by revisiting the origins of global health (...) and deconstructing the notion of partnership. We also review promising initiatives that may help to rebalance the relationship. Historical accounts are helpful in unpacking the genesis of collaborative research between Northerners and Southerners – particularly those coming from the African continent. In the 1980s, the creation of a scientific hub of working relationships based on material differences created a context that was bound to create tensions between the alleged “partners”. Today, partnerships provide assistance to underfunded African research institutions, but this assistance is often tied with hypotheses about program priorities that Northern funders require from their Southern collaborators. African researchers are often unable to lead or contribute substantially to publications for lack of scientific writing skills, for instance. Conversely, academics from African countries report frustrations at not being consulted when the main conceptual issues of a research project are discussed. However, in the name of political correctness, these frustrations are not spoken aloud. Fortunately, initiatives that shift paternalistic programs to formally incorporate a mutually beneficial design at their inception with equal input from all stakeholders are becoming increasingly prominent, especially initiatives involving young researchers. Several concrete steps can be undertaken to rethink partnerships. This goes hand in hand with reconceptualizing global health as an academic discipline, mainly through being explicit about past and present inequalities between Northern and Southern universities that this discipline has thus far eluded. Authentic and transformative partnerships are vital to overcome the one-sided nature of many partnerships that can provide a breeding-ground for inequality. (shrink)

GILLETT K. Nursing Inquiry 2010; 17: 197–207From ‘part of ’ to ‘partnership’: the changing relationship between nurse education and the National Health ServiceWorldwide, many countries have moved towards incorporating nurse education into the higher education sector and this inevitably has implications for the relationship between nurse education providers and local health service providers. This study explores the changes to the relationship in the UK between nurse education providers and the UK National Health Service over the past 20 (...) years and demonstrates how two political ideologies have been central to those changes. The two ideologies of interest are the introduction of internal markets to the National Health Service by the Conservative government at the end of the 1980s and the New Labour response to the fragmentation of public services caused by Conservative neoliberal policy, which was to introduce the notion of ‘partnership working’. This study reviews the wider debate around partnership policy and applies that debate to evaluate the way that nurse education providers and the National Health Service are working in partnership to provide clinical practice placements for nursing students. (shrink)

The existing model for ethical review of medical research consists primarily of regulations designed to prevent exploitation of participants. This model may fail when reviewing other ethical obligations, particularly the responsibility to provide valuable knowledge to society. Such failure is most apparent in developing countries, in which many stakeholders lack incentives or power to uphold society’s interests. An alternative ethical model is that of partnership, which actively involves all partners during ethical review and aims to secure partners’ best interests through (...) compromise. Unlike the existing “regulatory” model, the partnership model effectively addresses ethical obligations to provide positive benefits to society. For the partnership model to be effective, power must be shared among partners; thus, the partnership model can be harmonised with the “regulatory” model through explicit consideration of power structures. One opportunity for crafting power balance in developing countries is apparent in “implementation trials”—randomised trials motivated by and integrated into the implementation of long term public health interventions. Given the failings of the existing ethical review model, alternative models—for example, partnership—and means to balance power—for example, implementation trials—must be explored to ensure that medical research provides knowledge of value to societies in the developing world. (shrink)

Just Transition, an organizing and policy framework that has emerged from the climate justice movement, is a powerful upstream response to health disparities created by structural subordination. As the public health field pushes itself to address the “cause of causes” of unjust health disparities, Just Transition offers new possibilities for partnership and collective action. We introduce the Just Transition framework, explain its relevance to the concerns of health justice advocates, and provide some examples of how (...) the two movements might work together. (shrink)

Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the Science, (...) class='Hi'>Health and Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

Background The ethical governance of Artificial Intelligence (AI) in health care and public health continues to be an urgent issue for attention in policy, research, and practice. In this paper we report on central themes related to challenges and strategies for promoting ethics in research involving AI in global health, arising from the Global Forum on Bioethics in Research (GFBR), held in Cape Town, South Africa in November 2022. Methods The GFBR is an annual meeting organized (...) by the World Health Organization and supported by the Wellcome Trust, the US National Institutes of Health, the UK Medical Research Council (MRC) and the South African MRC. The forum aims to bring together ethicists, researchers, policymakers, research ethics committee members and other actors to engage with challenges and opportunities specifically related to research ethics. In 2022 the focus of the GFBR was “Ethics of AI in Global Health Research”. The forum consisted of 6 case study presentations, 16 governance presentations, and a series of small group and large group discussions. A total of 87 participants attended the forum from 31 countries around the world, representing disciplines of bioethics, AI, health policy, health professional practice, research funding, and bioinformatics. In this paper, we highlight central insights arising from GFBR 2022. Results We describe the significance of four thematic insights arising from the forum: (1) Appropriateness of building AI, (2) Transferability of AI systems, (3) Accountability for AI decision-making and outcomes, and (4) Individual consent. We then describe eight recommendations for governance leaders to enhance the ethical governance of AI in global health research, addressing issues such as AI impact assessments, environmental values, and fair partnerships. Conclusions The 2022 Global Forum on Bioethics in Research illustrated several innovations in ethical governance of AI for global health research, as well as several areas in need of urgent attention internationally. This summary is intended to inform international and domestic efforts to strengthen research ethics and support the evolution of governance leadership to meet the demands of AI in global health research. (shrink)

It is perhaps most useful to approach the Doctor-Patient relationship (DPR) by admitting that it’s complicated. We review some of the strategies that have been employed to mitigate this complexity, zeroing in on one that promises to capture the main features of the DPR without eliminating some of its more important, existential components; pieces of the puzzle that must be retained if we are to avoid oversimplification and the errors that can arise by ignoring important foundational properties. We believe that (...) a useful way to look at the DPR and to capture essential features that must be balanced in the process is provided by Partnership Theory and its definition in terms of the so-called domination and partnership systems. We apply this theory to the DPR and investigate the implications of this application to health care. We see that in the absence of mitigating circumstances, adoption of the patient-as-partner model serves healthcare well and is flexible enough to accommodate circumstances that dictate modifications. (shrink)

ABSTRACTDecisions that influence health and access to health care are necessarily a matter of ethics. This paper attempts to examine current budgetary allocations and policy shifts in India from the perspective of global ethical values. It also describes how global economic processes may increase health inequity nationally and argues that they should, therefore, be subject to global health ethics. Public health in India is in a state of crisis from a disinvestment in public (...) health care services and persistent neglect, simultaneous to the global push to enhance privatization. National health policies have remained oblivious to the unacceptably high inequity in access to health care on the one hand, and the cautionary analysis of the experience with currently chosen solutions through public-private- partnership and insurance models, which further marginalize the poorest. Global institutions such as the World Trade Organisation also influence national policies to benefit global business interests but often with detrimental effect upon equitable access to health and health care. The paper argues that the application of ethics must become more visible in the determination of national policies that are led by the dominant global paradigms of economic development to ensure that equitable access to health is prioritized. (shrink)

In the last decade, the organization of pharmaceutical research on neglected tropical diseases has undergone transformative change. In a context of perceived “market failure,” the development of new medicines is increasingly handled by public-private partnerships. This shift toward hybrid organizational models depends on a particular form of exchange: the sharing of proprietary assets in general and of intellectual property rights in particular. This article explores the paradoxical role of private property in this new configuration of global health (...) research and development. Rather than a tool to block potential competitors, proprietary assets function as a lever to attract others into risky collaborative ventures; instead of demarcating public and private domains, the sharing of property rights is used to increase the porosity of that boundary. This reimagination of the value of property is connected to the peculiar timescape of global health drug development, a promissory orientation to the future that takes its clearest form in the centrality of “virtual” business models and the proliferation of strategies of deferral. Drawing on the anthropological literature on inalienable possessions, we reconsider property’s traditional exclusionary role and discuss the possibility that the new pharmaceutical “commons” proclaimed by contemporary global health partnerships might be the precursor of future enclosures. (shrink)

The human intestinal ecosystem, previously called the gut microflora is now known as the Human Gut Microbiota. Microbiome research has emphasized the potential role of this ecosystem in human homeostasis, offering unexpected opportunities in therapeutics, far beyond digestive diseases. It has also highlighted ethical, social and commercial concerns related to the gut microbiota. As diet factors are accepted to be the major regulator of the gut microbiota, the modulation of its composition, either by antibiotics or by food intake, should be (...) regarded as a fascinating tool for improving the human health. Scientists, the food industry, consumers and policymakers alike are involved in this new field of nutrition. Defining how knowledge about the HGM is being translated into public perception has never been addressed before. This raises the question of metaphors associated with the HGM, and how they could be used to improve public understanding, and to influence individual decision-making on healthcare policy. This article suggests that a meeting of stakeholders from the social sciences, basic research and the food industry, taking an epistemological approach to the HGM, is needed to foster close, innovative partnerships that will help shape public perception and enable novel behavioural interventions that would benefit public health. (shrink)

This paper considers how we can conceptualize a “global response” to chronic, non-communicable diseases (NCDs) – including cardiovascular disease, cancer, diabetes, and tobacco-related diseases. These diseases are the leading cause of death and disability in developed countries, and also in developing countries outside sub-Saharan Africa. The paper reviews emerging and proposed initiatives for global NCD governance, explains why NCDs merit a global response, and the ways in which global initiatives ultimately benefit national health outcomes. As the global response to (...) NCDs matures, and the number of initiatives and partnerships increases, it will become increasingly important to map their respective contributions, and to evaluate progress overall. It is not yet clear what institutional mechanism, if any, will rise above the sea of surrounding initiatives to play this global role. This paper therefore aims to provide a conceptual map for making sense of what individual initiatives contribute to global governance. This map also draws attention to the distinctively “global” public health functions that a global response to NCDs should seek to discharge. (shrink)

Surveillance programs supporting the management of One Health issues such as antibiotic resistance are complex systems in themselves. Designing ethical surveillance systems is thus a complex task (retroactive and iterative), yet one that is also complicated to implement and evaluate (e.g., sharing, collaboration, and governance). The governance of health surveillance requires attention to ethical concerns about data and knowledge (e.g., performance, trust, accountability, and transparency) and empowerment ethics, also referred to as a form of responsible self-governance. Ethics in (...) reflexive governance operates as a systematic critical-thinking procedure that aims to define its value: What are the “right” criteria to justify how to govern “good” actions for a “better” future? The objective is to lay the foundations for a methodological framework in empirical bioethics, the rudiments of which have been applied to a case study to building reflexive governance in One Health. This ongoing critical thinking process involves “mapping, framing, and shaping” the dynamics of interests and perspectives that could jeopardize a “better” future. This paper proposes to hybridize methods to combine insights from collective deliberation and expert evaluation through a reflexive governance functioning as a community-based action-ethics methodology. The intention is to empower individuals and associations in a dialogue with society, which operation is carried out using a case study approach on data sharing systems. We based our reasoning on a feasibility study conducted in Québec, Canada (2018–2021), envisioning an antibiotic use surveillance program in animal health for 2023. Using the adaptive cycle and governance techniques and perspectives, we synthesize an alternative governance model rooted in the value of empowerment. The framework, depicted as a new “research and design (R&D)” practice, is linking operation and innovation by bridging the gap between Reflexive, Evaluative, and Deliberative reasonings and by intellectualizing the management of democratizing critical thinking locally (collective ethics) by recognizing its context (social ethics). Drawing on the literature in One Health and sustainable development studies, this article describes how a communitarian and pragmatic approach can broaden the vision of feasibility studies to ease collaboration through public-private-academic partnerships. The result is a process that “reassembles” the One Health paradigm under the perspective of global bioethics to create bridges between the person and the ecosystem through pragmatic ethics. (shrink)

Across the country, legal and health care professionals who understand that health outcomes are most influenced by social and environmental conditions have improved patient health by adopting the interdisciplinary MLP health care delivery model. However, the MLP field cannot advance population health, let alone long-term health equity, until it addresses the structural determinants of health inequity that are rooted in discrimination, segregation, and other forms of racial and ethnic subordination.

In lieu of an abstract, here is a brief excerpt of the content:On PartnershipRyan Schwarz, Duncan Smith-Rohrberg Maru, Dan Schwarz, Bibhav Acharya, Bijay Acharya, Ruma Rajbhandari, Jason Andrews, Gregory Karelas, Ranju Sharma, and Mark ArnoldyRecently, Bayalpata Hospital, in the rural district of Achham, Nepal almost collapsed under the weight of its own staff's discontent. The hospital had been largely abandoned until 2009 when our organization, Nyaya Health, renovated and opened it in partnership with the Nepali government. Since then, the (...) hospital has seen great progress and has experienced widespread community support. Nonetheless, earlier this year, a broad-based staff revolt occurred, led primarily by our senior clinical staff members, raising concerns that Nyaya's management policies were ineffective, and wages and benefits were too low. The unrest included everything from a strike, limiting services to our patients, to aggression against non-strikers and slander and racist comments in public media against the Nyaya Health Board of Directors. Ultimately, the conflict was resolved, though not without the departure of our three most senior clinicians. The incident deeply damaged staff morale [End Page 101] and impeded basic services to our patients, and from our perspective as a leadership and management team, it was deeply troubling and spiritually challenging. We have learned much in the wake of the strike, but here we focus more narrowly on the concept of partnerships in our work by examining the recent strike and the two key issues that lead to it: wages and benefits, and management policies at Bayalpata Hospital.In grappling with the recent staff crisis, some of our leadership team expressed concerns that we would never be able to develop a true partnership in Achham if our senior-level employees led strikes against the organization. The leaders of the strike were our most well-educated and high-ranking staff. They were also individuals who had come to work for us specifically citing the moral imperative of our work, and their pride in helping to serve the poorest of the poor. One leadership team member asked, "What is 'partnership' then? We came into this work with the premise that we would work together, with our partnership built around the right to health—but who are our partners if they lead strikes damaging the very services our collective mission aims to offer?"Another leadership team member commented, "The first time I visited Achham I was invited for tea at Meena's* house (one of Nyaya's midwives). We arrived at her house and Meena greeted us warmly. She showed us in to a small room: there was no furniture, but there was an immaculately swept mat which we joined her on. We drank tea, seated on her rug, and listened to her tell us how she had come to live in the house, how she had come to work for Nyaya, and her pride in now being able to provide both for her own children, as well as, the children of her relatives. As the only employed family member, she now had the challenge of providing for all of them. When we question our partnership, I'm taken back to Meena's warm, but extremely poor, home. She has worked for Nyaya for almost four years. She has helped our organization provide free care to over 75,000 people. Is this not a type of 'partnership'?"Allow us to offer some background on the issue of wages—Meena has been with our team since 2008, and has been paid about $2,500 per year—a generous wage compared to other employers in the region. Meena was one of the striking staff members. Among other concerns about the way the hospital was being run, she and other staff asked indignantly why we couldn't provide them with higher wages, better benefits, and more resources, both for her and the hospital. Notably, Meena's salary (and the rest of our staff's) was well above her equivalent in other, more urban hospitals (to compensate for the extremely remote area in which we work), and in a district where most families are farmers, our staff's salaries occupy the highest income bracket in the region. Nonetheless, as is common throughout the world in both rich and poor areas... (shrink)

Writing reflects some of the different characteristics of the language being used and of the people who are communicating. The present paper focusses on the internal written communication in international and inter-disciplinary research projects. Using a case study of an international public health research project, it argues that the authorship and the languages used in internal project communication are not neutral but help to generate or reinforce power hierarchies. Within research partnerships, language thus raises ethical issues that (...) have so far been neglected. Current ethics guidelines often focus on interactions between scientists and participants of social research and clinical trials, with less attention paid to the interactions among the scientists themselves. Describing all the different project phases based on writing within a research project, the paper distinguishes different influences on the distribution of power that emerge through a focus on written communication. The focus of the present paper is to illuminate the issues of ethics, power and the dimensions of hierarchy, physical location and native versus non-native English speakers that arise from paying attention to such communications. (shrink)

Biomedical research has a strong impact on a country’s scientific-technological and socioeconomic development. It can make a significant contribution at three different levels: promotion of public health; the exchange of knowledge within the scientific community; and economic/ financial profitability. Africa only attracts ~3.3% of the world’s clinical research. This small proportion is due to, among several factors, the absence of two fundamental aspects: specific robust legislation and capacity for regulatory and ethical evaluation. There are five Portuguese- speaking African (...) countries – Angola, Cabo Verde, Guinea-Bissau, Mozambique and São Tomé and Príncipe. Despite presenting different degrees of clinical research development, these countries show a common serious insufficiency in the minimum conditions necessary for hosting, collaborating or leading biomedical research projects. These countries are also excluded from the support of international organisations for capacity building because of the language barrier. The Biomedical Ethics and Regulatory Capacity Building Partnership for Portuguese-Speaking African Countries project has developed methods to build capacity and partnership through research on national law, comparisons with international standards and by issuing recommendations at a national level. Through collaborative intensive training, trainees are taught to become educators at a national level. This, in turn, creates a sustainable impact at country level. BERC-Luso is a pioneering project, owing to a combination of innovative features. The partnership project: was developed exclusively in Portuguese; involves a large number of African countries, and national and international institutions; has been further enhanced by the diversity and complementarity of its action plans; and has also benefited from a broad participatory methodology based on resolution of recipients’ problems by the recipients themselves. It thus stands out as a model for similar future projects. (shrink)