Developed in the past two decades, the clustered regularly interspaced short palindromic repeats‐associated protein 9 (CRISPR‐Cas9) technique offers greater accessibility and efficiency in editing genes. Its immediate success has transformed medical research and treatment in productive ways, but has also left questions about ethical consequences in its wake. These are questions familiar to bioethical inquiry. How do we balance short‐term and long‐term benefits and risks? How do we promote just and equitable access to new medical interventions? How do we protect (...) respect for individual autonomy? These questions require a balance between protecting individuals' liberties and the good of the communities in which they live. In this essay, I am interested in how the principle of respect for autonomy can be interpreted in light of CRISPR‐Cas9. I argue that a relational autonomy framework forges a middle ground between the need to respect individual freedom to pursue genetic treatments and the need to acknowledge the networks of dependence that define our moral worlds. I identify three thematic areas that relational autonomy brings into greater focus: the importance of trust, the acknowledgment of vulnerability/dependence, and the promotion of justice. Autonomy understood relationally allows us to see individual freedom as tethered to communal well‐being. (shrink)

Public health involves the use of power to change institutions and redistribute resources and deliberately to shape individual thought and behavior. This requires normative legitimation and demands ethical critique. This article explores concepts that are vital to public health ethics, but have been relatively neglected. These are membership, solidarity and the concept of place. The article argues that the practice of public health should recognize the equal rights of membership in communities of health justice. Public health should also rely on (...) a sense of obligation and mutual aid in a world of shared vulnerability and reciprocal recognition. Finally, public health achieves its goals not merely—and perhaps not most fundamentally—through information and altering the logical ratiocination of individuals or groups, but rather through the reformation of sense and sensibility. (shrink)

Key ethical challenges for healthcare workers arising from the COVID-19 pandemic are identified: isolation and social distancing, duty of care and fair access to treatment. The paper argues for a relational approach to ethics which includes solidarity, relational autonomy, duty, equity, trust and reciprocity as core values. The needs of the poor and socially disadvantaged are highlighted. Relational autonomy and solidarity are explored in relation to isolation and social distancing. Reciprocity is discussed with reference to healthcare workers’ duty of care (...) and its limits. Priority setting and access to treatment raise ethical issues of utility and equity. Difficult ethical dilemmas around triage, do not resuscitate decisions, and withholding and withdrawing treatment are discussed in the light of recently published guidelines. The paper concludes with the hope for a wider discussion of relational ethics and a glimpse of a future after the pandemic has subsided. (shrink)

Stigmatization and sharming of healthcare workers in Japan during the coronavirus 2019 pandemic reveal uniquely Japanese features. Seken, usually translated as ‘social appearance or appearance in the eyes of others,’ is a deep undercurrent woven into the fabric of Japanese life. It has led to providers who become ill with the SARS-CoV-2 virus feeling ashamed, while concealing their conditions from coworkers and public health officials. It also has led to healthcare providers being perceived as polluted and their children being told (...) they were not welcome in schools. Although such experiences are not isolated to Japan and have appeared in other parts of the world, the cultural forces driving them in Japan are unique. Overcoming stigmatization and shaming of Japanese healthcare providers will require concerted efforts to understand cultural barriers and to view such practices as raising human rights issues affecting the safety and well-being of all. (shrink)

In this article, we present an ethics framework for health practice in humanitarian and development work: the ethics of engaged presence. The ethics of engaged presence framework aims to articulate in a systematic fashion approaches and orientations that support the engagement of expatriate health care professionals in ways that align with diverse obligations and responsibilities, and promote respectful and effective action and relationships. Drawn from a range of sources, the framework provides a vocabulary and narrative structure for examining the moral (...) dimensions of providing development or humanitarian health assistance to individuals and communities, and working with and alongside local and international actors. The elements also help minimize or avoid certain miscalculations and harms. Emphasis is placed on the shared humanity of those who provide and those who receive assistance, acknowledgement of limits and risks related to the contributions of expatriate health care professionals, and the importance of providing skillful and relevant assistance. These elements articulate a moral posture for expatriate health care professionals that contributes to orienting the practice of clinicians in ways that reflect respect, humility, and solidarity. Health care professionals whose understanding and actions are consistent with the ethics of engaged presence will be oriented toward introspection and reflective practice and toward developing, sustaining and promoting collaborative partnerships. (shrink)

In this article, we present an ethics framework for health practice in humanitarian and development work: the ethics of engaged presence. The ethics of engaged presence framework aims to articulate in a systematic fashion approaches and orientations that support the engagement of expatriate health care professionals in ways that align with diverse obligations and responsibilities, and promote respectful and effective action and relationships. Drawn from a range of sources, the framework provides a vocabulary and narrative structure for examining the moral (...) dimensions of providing development or humanitarian health assistance to individuals and communities, and working with and alongside local and international actors. The elements also help minimize or avoid certain miscalculations and harms. Emphasis is placed on the shared humanity of those who provide and those who receive assistance, acknowledgement of limits and risks related to the contributions of expatriate health care professionals, and the importance of providing skillful and relevant assistance. These elements articulate a moral posture for expatriate health care professionals that contributes to orienting the practice of clinicians in ways that reflect respect, humility, and solidarity. Health care professionals whose understanding and actions are consistent with the ethics of engaged presence will be oriented toward introspection and reflective practice and toward developing, sustaining and promoting collaborative partnerships. (shrink)

Healthcare user fees present an important barrier for accessing services for the poorest (indigents) in Burkina Faso and selective removal of fees has been incorporated in national healthcare planning. However, establishing fair, effective and sustainable mechanisms for the removal of user fees presents important challenges. A participatory action-research project was conducted in Ouargaye, Burkina Faso, to test mechanisms for identifying those who are indigents, and funding and implementing user fee removal. In this paper, we explore stakeholder perceptions of ethical considerations (...) relating to participation and partnership arising in the action-research. (shrink)

Uncertainty is inherent in new and unexpected viral outbreaks such as the current COVID-19 pandemic. It imposes challenges for health officials in soliciting cooperative behavioural changes based on incomplete information. In this paper, we use evolving mask recommendations in the United States as an example to analyse the ethical importance and practical demonstration of trustworthiness in pandemic messaging and decision-making. We argue that responsible public health interventions in the time of uncertainties requires explicit intersecting ethical considerations both in action and (...) in communication to promote trustworthiness. First, as public health decisions have to be made in the face of incomplete and evolving data, health officials need to exhibit competence while committing to epistemic humility. They can explain the methods used in making and updating mask recommendations as well as explicitly acknowledge the need to incorporate sociocultural and other contextual considerations in translating scientific data into mask recommendations. Second, officials and agencies must uphold and communicate decisional transparency as part of their effort to demonstrate accountability and promote the public’s understanding of the evolving pandemic. Third, especially since both the pandemic and mask recommendations may have disparate impact on different populations, officials should start with the fair implementation of the least restrictive measures that can help reduce harm. (shrink)

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

Politics, Philosophy & Economics, Volume 21, Issue 2, Page 165-189, May 2022. It is generally acknowledged that a certain amount of state intervention in health and health care is needed to address the significant market failures in these sectors; however, it is also thought that the primary rationale for state involvement in health must lie elsewhere, for example in an egalitarian commitment to equalizing access to health care for all citizens. This paper argues that a complete theory of justice in (...) health can be derived from a commitment to correcting market failure, or in other words promoting Pareto-efficiency, in the domain of health. This approach can address familiar problems around access to care, as well as problems related to resource allocation and rationing, the control of health care costs, and the foundations of public health. Egalitarian theories of justice in health cannot make sense of the depth and pervasiveness of state involvement in health and health care; only a theory rooted in the need to correct market failure can. (shrink)

This paper draws on findings from qualitative interviews with queer and trans patients and with physicians providing care to queer and trans patients in Halifax, Nova Scotia, Canada, to explore how routine practices of health care can perpetuate or challenge the marginalization of queers. One of the most common “measures” of improved cultural competence in health care practice is self-reported increases in confidence and comfort, though it seems unlikely that an increase in physician comfort levels with queer and trans patients (...) will necessarily mean better health care for queers. More attention to current felt discomfort in patient–provider encounters is required. Policies and practices that avoid discomfort at all costs are not always helpful for care, and experiences of shared discomfort in queer health contexts are not always harmful. (shrink)

Contemporary critical approaches to bioethics increasingly present themselves as “relational,” though the meaning of relationality and its implications for bioethics seem to be many and varying. I argue that this confusion is due to a multiplicity of relational approaches originating from distinct theoretical lineages. In this article, I identify four key differences among commonly referenced relational approaches: the scope and nature of relationships considered, the extent of the determining influence on individual selfhood, and the integrity of individual selfhood. Importantly, these (...) four differences carry consequences for the usage of relational approaches within academic and clinical bioethics. I show that these differences attach to multiple objects of critique within mainstream bioethics and imply distinct metaethical commitments. Although I issue a cautionary note about combining relational approaches from distinct lineages, I close by suggesting that many such approaches may have their use, drawing on Susan Sherwin's sense of bioethical theories as lenses. (shrink)

Value judgements in research and political decision-making that exclude evidence for the social determinants of suicide suggest that evidence is not sufficient on its own to guide policy and practice, and that there is a lack of conceptual clarity with regard to decisions relating to the prioritization of problems, the allocation of resources, the translation of research into practice, as well as questions of responsibility for suicide prevention. In this work I seek to broaden conventional ethical debate about suicide through (...) the use of public health ethics frameworks. I argue that despite espousing a public health approach, current suicide prevention strategies are based largely on individual-level theorizing. This emphasis on the individual works to responsibilize individuals and communities for suicide prevention and directs attention away from public policy and systemic inequities. Given continued high rates of suicide, especially among disadvantaged social groups and communities, comprehensive government action is required to address the social and political determinants of suicide. Normative justification for action in realizing these ends is critical. I conclude by proposing one practicable form of action to make values and value judgements in suicide prevention explicit so that alternative forms of ethical and political recognition and responsibility are acknowledged. (shrink)

Plusieurs aspects du modèle biopsychosocial promeuvent une approche humaniste en médecine. Cependant, Engel a explicitement rejeté un humanisme médical qui s’opposerait à la science. En adoptant une approche fondée sur la science des systèmes pour étudier les êtres humains, la santé et la maladie, Engel défend une approche scientifique pour améliorer la qualité des soins cliniques, ou autrement dit, une approche qui se prête à un examen scientifique de cette question.

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at (...) an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangibl... (shrink)

This paper focuses on an emergency basic income as a tool for avoiding financial insecurity during the time of pandemic. The authors argue that paying each resident a monthly cash amount for the duration of the crisis would serve to protect them from the economic fallout.They suggest three reasons why the EBI proposal is particularly well-suited to play an important role in a comprehensive public health response to COVID-19: it offers an immediate and agile response; it prioritizes the most vulnerable (...) in the affected population; and it promotes a solidaristic response to the pandemic crisis. To go beyond the need to shut down and restart an EBI assistance scheme each time a pandemic hits, the authors propose considering turning the program into a permanent feature. (shrink)

This chapter concerns the normativity of the concepts of paternalism and libertarian paternalism. The first concept is central in evaluating public health policy, but its meaning is controversial. The second concept is equally controversial and has received much attention recently. It may or may not shape the future evaluation of public health policy. In order to facilitate honest and fruitful debate, I consider three approaches to these concepts, in terms of their normativity. Concepts, I claim, may be considered nonnormative, normatively (...) charged, or normative in that they involve more complex relationships between values or duties. While the last approach is often best, other approaches may be appropriate depending on the context and purpose of discussion. The chapter’s conceptual investigation is illustrated by application to two public health policies: a tax on the consumption of fat and the encouragement of health-promoting food displays in restaurants and supermarkets. (shrink)

Health has been a focal point in sustainable development policies. Seventeen new goals of sustainable development contribute directly or indirectly to people’s health. Particular emphasis should be laid on health, along with saving lives of poor people. This can be done by effectively creating healthier society for individuals around the world. Sustainable development goals perceive significance value—that is to concentrate on the needs of hindered groups, children, women, and the poorest of poor to attain sustainable development of human ambitions and (...) to confirm a healthier life for all. This paper analyses the issues of public health and sustainable development from an ethical point of view. As ethics deals with what is good or bad, right or wrong, the paper examines the normative aspects of sustainable development with respect to public health. (shrink)

This study is a contribution to Chinese-Western dialogue of bioethics but perhaps the first one of its kind. From a Chinese-Western comparative ethical perspective, this work brings Chinese ethical theories, especially Confucian ethics, into a contemporary context of the epidemic of HIV/AIDS, and to see how the deeply-rooted thoughts of Confucius interact, compete, or integrate with concepts from Western ethical traditions. An underlying belief is that some ideas in Confucian ethics are important and insightful beyond their cultural and historical origins (...) in China and other Confucianism influenced societies.Methodologically, this thesis employs two approaches, conceptual normative analysis combined with critical interpretation. The ‘interpretive’ approach I employ, as an important methodology supplementing my normative analysis, not only deals with Chinese ancient texts, but also explains specific beliefs and practices in China.With a critical eye, this thesis carefully examines a number of key topics in the ethics of AIDS in China from a cross-cultural perspective. Topics including: views on personhood and the vulnerability of People Living with HIV/AIDS; prioritising and balancing the role of ‘harm reduction’ and the role of ‘eradication of deviant behaviour’ in AIDS policy in China; rights-based opt-out approach and duty-based family-centred approach in HIV testing and Biobanking; blood donation; moral responsibility and personal responsibility for health; and the popular rhetoric of ‘innocent infection’ versus ‘guilty infection’ in AIDS. My overall aim in this work is to present a cross-cultural bioethics study through the investigation of some ethical issues in AIDS in China from a Chinese-Western comparative perspective and also attempt to suggest a humane and effective policy for HIV/AIDS which I believe is appropriate to both traditions. I believe this work has contributed to our knowledge in three related but independent areas: the control of the epidemic of HIV/AIDS in China; medical ethics in China; and to both the methods and the utility of cross-cultural study of bioethics between China and the West. (shrink)

In a series of reflections published in the wake of the Covid-19 crisis, Giorgio Agamben expresses a number of concerns related to the way the pandemic has altered the very fabric of our societies, potentially changing it forever. While maintaining a certain scepticism towards the threat represented by the virus itself, Agamben claims that the response to the contagion shows how easy it is for authorities to limit individual freedoms in the name of public health, and how readily they are (...) willing to put such limitations in place. At the same time, the pandemic shows how easy it is for individuals to accept this situation as the new normal, and how readily they are willing to give up their freedoms and relationships. In this paper I offer a brief overview of Agamben’s worries, focussing on two issues in particular: the loss of individual freedom of movement and association, and the moral and political implications of social distancing. I then approach these issues from a different angle, making use of relational theory to propose an alternative framework which relies on the notion of vulnerability. While agreeing with Agamben that there is reason to worry about the state seizing the opportunity to exercise unchecked power over its citizens, I argue that we should pay attention to the ways in which social distancing measures can be grounded in solidarity and respect for the autonomy of vulnerable individuals. (shrink)