Jecker makes three major points in her article, “A Broader View of Justice” (2008). First, she argues that justice in healthcare relates to justice in the broader social conditions of society as th...

This paper reflects on the relationship between theory and practice in bioethics, by using various concepts drawn from debates on innovation in healthcare research—in particular debates around how best to connect up blue skies ‘basic’ research with practical innovations that can improve human lives. It argues that it is a mistake to assume that the most difficult and important questions in bioethics are the most abstract ones, and also a mistake to assume that getting clear about abstract cases will automatically (...) be of much help in getting clear about more complex cases. It replaces this implicitly linear model with a more complex one that draws on the idea of translational research in healthcare. On the translational model, there is a continuum of cases from the most simple and abstract to the most concrete and complex. Insights need to travel in both directions along this continuum—from the more abstract to the more concrete and from the more concrete to the more abstract. The paper maps out some difficulties in moving from simpler to more complex cases, and in doing so makes recommendations about the future of bioethics. (shrink)

The goal of this paper is to articulate and advocate for an enhanced role for philosophers of science in the domain of science policy as well as within the science curriculum. I argue that philosophy of science as a field can learn from the successes as well as the mistakes of bioethics and begin to develop a new model that includes robust contributions to the science classroom, research collaborations with scientists, and a role for public philosophy through involvement in science (...) policy development. Through an analysis of two case studies, I illustrate how philosophers of science can make effective and productive contributions to science education as well as to interdisciplinary scientific research, and argue for the essential role of philosophers of science in the realm of science policy. (shrink)

Teaching ethics is crucial to health sciences education. Doing it well requires a willingness to engage contentious social issues. Those issues introduce conflict and risk, but avoiding them ignores moral diversity and renders the work of ethics education irrelevant. Therefore, when (not if) contentious issues and moral differences arise, they must be acknowledged and can be addressed with humility, collegiality, and openness to support learning. Faculty must risk moments when not everyone will “feel safe,” so the candor implied in psychological (...) safety can emerge. The deliberative and social work of ethics education involves generous listening, wading into difference, and wondering together if our beliefs and arguments are as sound as we once thought. By forecasting the need for candid engagement with contentious issues and moral difference, establishing ground rules, and bolstering due process structures for faculty and students, a riskier and more relevant ethics pedagogy can emerge. Doing so will prepare everyone for the moral diversity they can expect in our common life and in practice. (shrink)

In the 1970s “bioethics” emerged as a new interdisciplinary discourse on medicine, health care, and medical technologies, primarily in Western, developed countries. The main focus was on how individual patients could be empowered to cope with the challenges of science and technology. Since the 1990s, the main source of bioethical problems is the process of globalization, particularly neo‐liberal market ideology. Faced with new challenges such as poverty, inequality, environmental degradation, hunger, pandemics, and organ trafficking the bioethical discourse of empowering individuals (...) is no longer sufficient. Global bioethics nowadays is concerned with applying and implementing a universal ethical framework. Islamic bioethics has contributed to creating such framework (exemplified in the UNESCO Universal Declaration on Bioethics and Human Rights) while at the same time it is continuously articulating and interpreting this framework in specific settings and contexts. (shrink)

There are several strategies to promote health in individuals and populations. Two general approaches to health promotion are behavior change and empowerment. The aim of this article is to present those two kinds of strategies, and show that the behavior-change approach has some moral problems, problems that the empowerment approach (on the whole) is better at handling. Two distinct ‘ideal types’ of these practices are presented and scrutinized. Behavior change interventions use various kinds of theories to target people’s behavior, which (...) they do through information, persuasion, coercion and manipulation. Empowerment is a collaborative method where those ‘facilitated’ participate in the change process. Some ethical problems with the behavior-change model are that it does not sufficiently respect the right to autonomy of the individuals involved and risks reducing their ability for autonomy, and that it risks increasing health inequalities. Empowerment, on the other hand, respects the participant’s right to autonomy, tends to increase the ability for autonomy, as well as increasing other coping skills, and is likely to reduce inequalities. A drawback with this approach is that it often takes longer to realize. (shrink)

One important ethical issue for health promotion and public health work is to determine what the goals for these practices should be. This paper will try to clarify what some of these goals are thought to be, and what they ought to be. It will specifically discuss two different approaches to health promotion, such as, behavior change and empowerment. The general aim of this paper is, thus, to compare the behavior-change approach and the empowerment approach, concerning their immediate goals or (...) aims, and to morally evaluate the strengths and weaknesses of these two goal models, in relation to the ultimate goal of health promotion. The investigation shows that the behavior-change approach has several moral problems. First of all, it is overly paternalistic and often disregards the individual’s or group’s own perception of what is important—something that also increases the risk of failed interventions. Furthermore, it risks leading to ‘victim blaming’ and stigmatization, and to increased inequalities in health, and it puts focus on the ‘wrong’ problems, i.e., behavior instead of the ‘causes of the causes’. It is thereafter shown that the empowerment approach does not have any of these problems. Finally, some specific problems for the empowerment approach are discussed and resolved, such as, the idea that empowering some groups might lead to power over others, the objection that the focus is not primarily on health, and the fact that empowered people might choose to live lives that risk reducing their health. (shrink)

The vision of global health with justice which Larry Gostin articulates in his book Global Health Law envisages a switch to ‘upstream’ priority-setting for expenditure on health, with a focus upon social determinants and a goal of redressing health inequalities. This article explores what is meant by this proposal and offers a critical evaluation of it. It is argued that difficulties arise in respect of the ethical and evidential bases for such an approach to the setting of priorities, while significant (...) challenges may also arise in the necessary modification of structures of governance. (shrink)

Significant inequalities in health between and within countries have been measured over the past decades. Although these inequalities, as well as attempts to improve sub-standard health, raise profound issues of social justice and the right to health, those working in the field of bioethics have historically tended to devote greater attention to ethical issues raised by new, cutting-edge biotechnologies such as life-support cessation, genomics, stem cell research or face transplantation. This suggests that bioethics research and scholarship may revolve around issues (...) that, while fascinating and important, currently affect only a small minority of the world's population. In this article, we examine the accusation that bioethics is largely dominated by Anglophone and industrialized world interests, and explore what kinds of positive contributions a 'bioethics from below' (as Paul Farmer calls it) can make to the field of bioethics in general. As our guide in this exploration, we make use of some experiences and lessons learned in our collaborative bioethics project in the Democratic Republic of Congo, Building Bioethics Capacity and Justice in Health. We conclude that while there is some evidence of increased attention to bioethical challenges in developing countries, this development should be further cultivated, because it could help expand the horizons of the field and enhance its social relevance wherever it is practiced. (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)

The available resources for global health assistance are far outstripped by need. In the face of such scarcity, many people endorse a principle according to which highest priority should be given to the worst off. However, in order for this prioritarian principle to be useful for allocation decisions, policy-makers need to know what it means to be badly off. In this article, we outline a conception of disadvantage suitable for identifying the worst off for the purpose of making health resource (...) allocation decisions. According to our total advantage view: the worst off are those who have the greatest total lifetime disadvantage; advantage foregone due to premature death should be treated in the same way as other ways of being disadvantaged at a time; how badly off someone is depends on the actual outcomes that will befall her without intervention, not her prospects at a time; and all significant forms of disadvantage count for determining who is worst off, not just disadvantage relating to health. We conclude by noting two important implications of the total advantage view: first, that those who die young are among the globally worst off, and second, that the epidemiological shift in the global burden of disease from communicable to non-communicable diseases should not lead to a corresponding shift in global health spending priorities. (shrink)

[OPEN ACCESS] Commentaries on the ethics of Covid lockdowns nearly all focus on offering substantive guidance to policy‐makers. Lockdowns, however, raise many ethical questions that admit of a range of reasonable answers. In such cases, policy‐making in a liberal democracy ought to be sensitive to which reasonable views the public actually holds—a topic existing bioethical work on lockdowns has not explored in detail. In this essay, I identify several important questions connected to the kind of influence the public ought to (...) have on lockdown decision‐making, including how policy‐makers ought to handle misinformed or morally suspect viewpoints, and how policy‐makers ought to respond to minority viewpoints. I argue that questions like this, concerning the appropriate influence of the public on decision‐making, will be central to the field of bioethics as it increasingly focuses on policy and population‐level issues and therefore ought to be priorities for future work. (shrink)

Comparative assessments of national bioethics commissions in the United States commonly look at the differences among these groups over their forty‐year history. A particular focus has been differences in the membership, mission, methods, and reports of the President's Council on Bioethics, which was active from 2001 until 2009, compared to those of its predecessors and the recent Presidential Commission for the Study of Bioethical Issues, active from 2009 until 2016. The differences are real, but disproportionate attention to them can obscure (...) the substantial similarities in commissions’ structure and function throughout the history of expert bioethics advice to government. As the Trump administration considers what role, if any, a bioethics commission will play in its work, it would be well served to consider how choices regarding the design of such a group and the topics it examines can best facilitate the unique contributions it can make to the government and to the country. (shrink)

The principles of autonomy, beneficence, non-maleficence, and justice are well established ethical principles in health research. Of these principles, justice has received less attention by health researchers. The purpose of this article is to broaden the discussion of health research ethics, particularly the ethical principle of justice, to include societal considerations — who and what are studied and why? — and to critique current applications of ethical principles within this broader view. We will use a feminist intersectional approach in the (...) context of health disparities research to firmly establish inseparable links between health research ethics, social action, and social justice. The aim is to provide an ethical approach to health disparities research that simultaneously describes and seeks to eliminate health disparities. (shrink)

In order to enhance the “structural competency” of medicine—the capability of clinicians to address social and institutional determinants of their patients’ health—physicians need a theoretical lens to see how social conditions influence health and how they might address them. We consider one such theoretical lens, fundamental cause theory, and propose how it might contribute to a more structurally competent medical profession. We first describe fundamental cause theory and how it makes the social causes of disease and health visible. We then (...) outline the sorts of “fundamental interventions” that physicians might make in order to address the fundamental causes. (shrink)

This article provides a concise overview of the history of scholarship on solidarity in Europe and North America. While recent decades have seen an increase in conceptual and scholarly interest in solidarity in North America and other parts of the Anglo-Saxon world, the concept is much more strongly anchored in Europe. Continental European politics in particular have given rise to two of the most influential traditions of solidarity, namely, socialism and Christian ethics. Solidarity has also guided important public instruments and (...) institutions in Europe. Despite the much stronger affinity of continental European societies to solidaristic thinking, we argue that solidarity has much to offer for addressing societal challenges on both sides of the Atlantic and beyond. After proposing a working definition of solidarity that highlights its utility for guiding policy and practice, we give an example of how a solidarity-based perspective can shape instruments for the governance of data use. (shrink)

In response to calls to expand the scope of research ethics to address justice in global health, recent scholarship has sought to clarify how external research actors from high-income countries might discharge their obligation to reduce health disparities between and within countries. An ethical framework—‘research for health justice’—was derived from a theory of justice (the health capability paradigm) and specifies how international clinical research might contribute to improved health and research capacity in host communities. This paper examines whether and how (...) external funders, sponsors, and researchers can fulfill their obligations under the framework. (shrink)

Thus far, little work in bioethics has specifically focused on global health research priority-setting. Yet features of global health research priority-setting raise ethical considerations and concerns related to health justice. For example, such processes are often exclusively disease-driven, meaning they rely heavily on burden of disease considerations. They, therefore, tend to undervalue non-biomedical research topics, which have been identified as essential to helping reduce health disparities. In recognition of these ethical concerns and the limited scholarship and dialogue addressing them, we (...) convened an international workshop in September 2015. The workshop aimed to initiate discussion on the appropriate relationship between global and national levels of health research priority-setting and to begin exploring what might be ethically required for priority-setting at each of those levels. This paper comprises our reflections following the workshop. Its main objective is to launch a research agenda for the ethics of global health research priority-setting. We identify three domains of global health research priority-setting—scope, underlying values and substantive requirements, and procedural considerations. For each domain, specific research questions are highlighted and why they need to be explored is explained. Some preliminary thoughts and normative arguments as to how the research questions might be answered are also offered. For example, we provide initial ideas about the appropriate relationship between different priority-setting levels and what values and substantive considerations should guide or underpin global health research priority-setting as a matter of justice. We anticipate that framing a new research agenda for the ethics of global health research priority-setting will spur ethicists, researchers, and policymakers to refocus their efforts on developing more rigorous and ethically sound approaches to priority-setting. (shrink)

Working at the bedside and within communities as patient advocates, nurses frequently intervene to advance individuals’ health and well-being. However, the International Council of Nurses’ Code of Ethics asserts that nurses should expand beyond the individual model and also promote a rights-enabling environment where respect for human dignity is paramount. This article applies the results of an ethnographic human rights study with displaced populations in Rwanda to argue for a rights-based social advocacy role for nurses. Human rights advocacy strategies include (...) sensitization, participation, protection, good governance, and accountability. By adopting a rights-based approach to advocacy, nurses contribute to health agendas that include more just social relationships, equitable access to opportunities, and health-positive living situations for all persons. (shrink)

Recently, there has been a concerted effort to shift bioethics’ traditional focus from clinical and research settings to more robustly engage with issues of justice and health equity. This broader bioethics agenda seeks to embed health related issues in wider institutional and cultural contexts and to help develop fair policies. In this paper, we argue that bioethicists who ascribe to the broader bioethics’ agenda could gain valuable insights from the interdisciplinary field of environmental justice and transportation justice, in particular. We (...) then proceed to demonstrate the importance of adopting an intersectional approach to transportation and health. The paper concludes with the argument that intersectional gender inequality is of particular importance when studying both health equity and the unequal distribution of burdens associated with transportation systems in local contexts. This essay is meant to be the beginning of a robust conversation concerning health equity, transportation justice, and intersectional distributions of both benefits and burdens. (shrink)

In this paper, I argue that addressing the medical needs of older persons warrants expanding the array of insured services as described by the Canada Health Act to include home care. The growing importance of chronic care supports my call for federally regulated home care services as the nature of disease management has changed significantly in the last decades. In addition, if the values of equity, fairness and solidarity, which are the keystone values of the CHA, are to be upheld (...) within the current social and demographic context, then Canada’s health care system should adapt accordingly. I focus my argument on the services provided to older persons for two main reasons. First, the changing nature of disease management is best seen in this population. If it is to be successfully argued that the transformations in medicine warrant an expansion of insured services covered by the CHA, it will be best illustrated by looking at the needs of older persons. Second, with the demographic shift looming large in the policy agenda, an exploration of this issue is not only crucial but timely. (shrink)

The three important target articles make a strong case for regarding racism as a public health crisis. Each calls for advocacy by the bi...

This paper introduces a novel approach to evaluating theories of the good. It proposes evaluating these theories on the basis of their compatibility with the most plausible ways of calculating overall intrinsic value of a world. The paper evaluates the plausibility of egalitarianism using this approach, arguing that egalitarianism runs afoul of the more plausible ways of calculating the overall intrinsic value of a world. Egalitarianism conflicts with the general motivation for totalism and critical-level totalism, which is that independent contributions (...) of each individual’s life should be counted separately. It conflicts with the most plausible version of averagism because only the highly implausible simultaneous life-segment version of egalitarianism can make sense of inequality being disvaluable at a time. Egalitarianism combined with a diminishing marginal value theory also fails because it holds that, other things equal, the world is a better place when we reduce inequality by adding many people whose lives go very badly but whose sheer numbers lessen inequality. The discussion moves the debate about egalitarianism forward by circumventing the oft-discussed, but intractable, debate concerning the leveling down objection. It also reveals a promising new approach to critiquing theories of the good. (shrink)

Through its adoption of the biomedical model of disease which promotes medical individualism and its reliance on the individual-based anthropology, mainstream bioethics has predominantly focused on respect for autonomy in the clinical setting and respect for person in the research site, emphasizing self-determination and freedom of choice. However, the emphasis on the individual has often led to moral vacuum, exaggeration of human agency, and a thin (liberal?) conception of justice. Applied to resource-poor countries and communities within developed countries, autonomy-based bioethics (...) fails to address the root causes of diseases and public health crises with which individuals or communities are confronted. A sociological explanation of disease causation is needed to broaden principles of biomedical ethics and provides a renewed understanding of disease, freedom, medical practice, patient-physician relationship, risk and benefit of research and treatment, research priorities, and health policy. (shrink)

In the 1970s “bioethics” emerged as a new interdisciplinary discourse on medicine, health care, and medical technologies, primarily in Western, developed countries. The main focus was on how individual patients could be empowered to cope with the challenges of science and technology. Since the 1990s, the main source of bioethical problems is the process of globalization, particularly neo-liberal market ideology. Faced with new challenges such as poverty, inequality, environmental degradation, hunger, pandemics, and organ trafficking the bioethical discourse of empowering individuals (...) is no longer sufficient. Global bioethics nowadays is concerned with applying and implementing a universal ethical framework. Islamic bioethics has contributed to creating such framework (exemplified in the UNESCO Universal Declaration on Bioethics and Human Rights) while at the same time it is continuously articulating and interpreting this framework in specific settings and contexts. (shrink)

Norman Daniels, who has written extensively on population health, once sighed that medical care is simply “the ambulance waiting at the bottom of the cliff” (Daniels 2008, 79). At the bottom of Dan...

Within contemporary health care, many of the decisions affecting the health and well-being of patients are not being made by the clinicians or health professionals, but by those involved in health care management. Existing literature on organizational ethics provides insight into the various structures, processes and strategies - such as mission statement, ethics committees, ethical rounds … - that exist to create an organizational climate, which fosters ethical practices and decision-making It does not, however, show how health care managers experience (...) their job as being intrinsically ethical in itself. In the present article, we investigate the way in which ethical values are present in the lived experiences and daily practice of health care management. What does it imply to take up a managing position within a health care institution and to try to do this in an ethically inspired way? We carried out a qualitative study (Grounded Theory Approach) to explore the essence of values-based leadership in health care. We interviewed 15 people with extensive experience in health care management in the fields of elderly care, hospital care and mental health care in the various regions of Flanders, Belgium. Six predominant themes, presented as metaphors, illustrate the essence of values-based leadership in health care management. These are: (1) values-based health care management as managing a large garden, (2) as learning and using a foreign language, (3) going on a trekking with an ethical compass, (4) embodying integrity and authenticity in a credible encounter with everyone, (5) being a present and trustworthy leader during sun and storm, and (6) contributing to human flourishing by giving people wings to fly. Notwithstanding the importance of organizing a good ethics infrastructure, values-based leadership in health care entails much more than that. It is about the co-creation of an integrated and comprehensive ethical climate of which community-model thinking and authentic leadership are essential components. As a never-ending process, the six metaphors can help leaders to take substantive proactive steps to shape a fruitful ethical climate within their organization. (shrink)

The 3rd Pan-African Ethics Human Rights and Medical Law (3rd EHRML) conference was held in Johannesburg on July 7, 2013, as part of the Africa Health Congress. The conference brought together bioethicists, researchers and scholars from South Africa, Zimbabwe, Kenya and Nigeria working in the field of bioethics as well as students and healthcare workers interested in learning about ethical issues confronting the African continent. The conference which ran with a theme of "Bioethical and legal perspectives in biomedical research and (...) medical practice in Africa with a focus on: Informed consent, HIV-AIDS & Tuberculosis, leadership & organizational ethics, patients and healthcare workers rights," was designed to expand the dialogue on African bioethics beyond the traditional focus on research ethics and the ethical dilemmas surrounding the conduct of biomedical research in developing countries. This introductory article highlights some of areas of focus at the conference including issues of leadership, organizational ethics and patients and healthcare workers rights in Africa. We analyze the importance of free speech, public debate of issues, argumentation and the need to introduce the teaching and learning of ethics to students in Africa in accordance with UNESCO guidelines. This article also focuses on other challenges confronting Africa today from an ethical standpoint, including the issues of poor leadership and organizational ethics which are main contributors to the problems prevalent in African countries, such as poverty, poor education and healthcare delivery systems, terrorism, social inequities, infrastructural deficits and other forms of 'structural violence' confronting vulnerable African communities. We believe that each of the eight articles included in this supplement, which have been rigorously peer-reviewed are a good example of current research on bioethics in Africa, and explore some new directions towards broadening the African bioethics agenda as we move forward to a new dawn for Africa in the 21st century. (shrink)

This paper offers a different pragmatic and patent-based approach to concerns regarding the negative effects of genetic-based patenting on advancing scientific research and providing adequate and accessible health care services. At the basis of this approach lies an explication of a mandatory provisional patented paper procedure (PPPA), designed for genetic-based patents and administered by leading scientific journals in the field, while officially acknowledged by the USPTO, and subsequently by other patent offices as well. It is argued that the uniqueness of (...) PPPAs lies in subsequently mitigating the negative ramifications of genetic patents on scientific research and genetic-based health care services, while basing such mitigation on a patents’ advocate viewpoint that neither discards the patent system nor jeopardizes its integrity. (shrink)

The controversy surrounding the use of hydroxychloroquine, an antimalarial drug, for COVID-19 has raised numerous ethical and policy problems. Since the suggestion that HCQ has potential for COVID-19, there have been varying responses from clinicians and healthcare institutions, ranging from adoption of protocols using HCQ for routine care to the conduct of randomised controlled trials to an effective system-wide prohibition on its use for COVID-19. In this article, we argue that the concept of ‘disease public profile’ has become a prominent, (...) if not the sole, determinant in decision-making across various healthcare responses to the pandemic. In the case of COVID-19, the disease’s public profile is based on clinical and non-clinical factors that include contagiousness, clinical presentation and media coverage. In particular, we briefly examine the dangers of a heightened public profile in magnifying the inequality of diseases and undermining three key ethical concepts, namely evidence-based practice, sustainable allocation and meaningful consent. (shrink)