ePub ahead of print, August 25, 2020.
Following an extraordinary response from authors from across the globe, the Journal of Bioethical Inquiry is pleased to share the first set of remarkable articles from its symposium on social and ethical implications of the COVID-19 pandemic. The symposium editors have organised these contributions into seven themes: overviews and provocations; society and the lifeworld; global perspectives; voices from different places; bioethical debates; clinical implications; and surveillance and the panopticon. We invite you to read their lead essay and the symposium articles listed below—all #Free2Read.
Michael Chapman, Paul Komesaroff, Ian Kerridge, and Ross Upshur
In the space of six months, the COVID-19 pandemic has transformed the world. Beginning with what seemed like a routine public health challenge in a single location, it quickly became a global health emergency, then a social and an economic catastrophe. While the full consequences of this momentous event may not become apparent for many years, it is inevitable that its effects will extend over generations to come. …It was in the context of the unfolding global reach of COVID-19 that this Journal of Bioethical Inquiry special collection was conceived. It was apparent from the outset that the range of ethical issues posed by the emerging crisis would be very extensive, as also was the fact that the nature and implications of the crisis itself would continue to evolve over time. > Read more.
COVID-19 Symposium: Part 1
I. Overviews and Provocations
- “ We” Are In This Together, But We Are Not One and the Same, Rosi Braidotti AbstractThe COVID-19 pandemic is a man-made disaster, caused by undue interference in the ecological balance and the lives of multiple species. Paradoxically, the contagion has resulted in increased use of technology and digital mediation, as well as enhanced hopes for vaccines and biomedical solutions. It has thereby intensified humans’ reliance on the very high-tech economy of cognitive capitalism that caused the problems in the first place. This combination of ambivalent elements in relation to the Fourth Industrial revolution and the Sixth Extinction is the trademark of the posthuman condition. This essay explores this condition further, offering both critical and affirmative propositions for moving forward.
- The New Fear of One Another, Alphonso Lingis AbstractThe COVID-19 contagion makes us fear anyone and everyone. Fear those with whom we are quarantined. Fear those confined in institutions. Doctors and nurses, who nonetheless care for us, know the most intense fear.
- The Appointment in Samarra: A New Use for Some Old Jokes, Slavoj Žižek ExtractIn my past work, I used—at least a dozen times—the old joke about a man who believes himself to be a grain of seed and is taken to a mental institution where the 18 doctors do their best to finally convince him that he is a human being. When he is cured—convinced that he is not a grain of seed but a man—and allowed to leave the hospital, he immediately comes back trembling with fear. There is a chicken outside the entrance door and he is afraid that it will eat him.
II. Society and the Lifeworld
- Fast Violence, Revolutionary Violence: Black Lives Matter and the 2020 Pandemic, Claire Colebrook AbstractThe 2020 pandemic cannot be divorced from the problem, pace, and spectacle of race, both because of the racial rhetoric regarding the origins of the violence and because of the subsequent racial injustice in the distribution of healthcare. This paper adds the concept of fast violence to Rob Nixon’s “slow violence” to look at the intersection between the climate of the planet and the climate of racial injustice.
- COVID-19 Ethics—Looking Down the Muzzle, Grant Gillett AbstractPublic health and pandemic ethics frequently concern themselves with organizing principles, utility, and public policy. But the effects of pandemics, and the impact of measures to control them, are experienced by individuals and families. This is particularly true for those who are most vulnerable to COVID19—the elderly and “infirm.” So while ethics must assist in articulating the policies that will determine the allocation of resources during this and future pandemics, it must, at the same time, be alert to the intimate narratives of the infection. This is an account from someone looking down the muzzle of COVID-19.
- Hope and Optimism: A Spinozist Perspective on COVID-19, Genevieve Lloyd AbstractThis essay discusses hope and optimism with reference to current rhetoric around COVID-19. It draws on Spinoza to suggest that much of that rhetoric rests on questionable assumptions about the supremacy of human reason within Nature.
- Knowing How to Act Well in Time, Peter Wagner AbstractNumerous scholars in the social sciences and humanities have speedily analysed and interpreted the COVID-19-induced social and political crisis. While the commitment to address an urgent topic is to be appreciated, this article suggests that the combination of confidence in the applicability of one’s tools and belief in the certainty of the available knowledge can be counterproductive in the face of a phenomenon that in significant respects is unprecedented. Starting out from the plurality of forms of knowledge that are mobilized to analyse COVID-19 and its consequences as well as the lack of any clearly hegemonic knowledge, the article tries to understand how a limited convergence in the politico-medical responses to the crisis emerged, and speculates on what would have happened if this had not been the case. In conclusion, it is argued that this pandemic demands a greater awareness of the uncertainty of our knowledge and of the consequences of our actions, both in terms of being situated in time and of aiming at timeliness.
- Not all Bad: Sparks of Hope in a Global Disaster, Paul Komesaroff AbstractThe focus of discussion about the ethical issues associated with the COVID-19 pandemic has been on the great suffering to which it has given rise. However, there may be some unexpected positive outcomes that also emerge from the global disaster. The rupturing of entrenched systems and processes, the challenging of certainties that seemed beyond question, and the disruption of the assumed consensus of modernity may contribute to a rediscovery of the challenges that compose an ethical life. Elements of such a process are evident in the surge of community support and mutual caring, of spontaneous acts of joyous solidarity, of suspension of past conflicts, and exploration of new forms of reconciliation. The experiences are tentative and the outcomes uncertain, but at least for a moment the hope of a new way forward has been raised.
- The Phenomenology of Contagion, Annu Dahiya AbstractThe lived experience of COVID-19 forcibly returns us to our bodies. This essay uses this (for most, sudden) return to embodiment to consider how our senses, as well as our “sense” of space, have been reoriented by this pandemic. It turns to certain strands within feminist philosophy that have questioned the privileged place vision has been accorded in the history of Western thought, as well as to mid-twentieth century phenomenologist Maurice Merleau-Ponty’s aim to rediscover the world of perception by philosophically centering the body, as touchstones to put forth a phenomenology of contagion. Contagion makes us confront our phenomenological and embodied experience of tactility. This focus on tactility undermines the philosophical hierarchy of the senses that accords sight as the most “noble” of the senses in Western canonical thought. While COVID-19 results in us rediscovering our bodies through touch in a moment of fear and panic, this essay considers how this rediscovery may be harnessed for different, possibly more just, futures.
- Sheltering at Our Common Home, Henk ten Have AbstractThe current COVID-19 pandemic has reactivated ancient metaphors (especially military ones) but also initiated a new vocabulary: social distancing, lockdown, self-isolation, and sheltering in place. Terminology is not ethically neutral but reflects prevailing value systems. I will argue that there are two metaphorical vocabularies at work: an authoritarian one and a liberal one. Missing is an ecological vocabulary. It has been known for a long time that emerging infectious diseases are associated with the destruction of functioning ecosystems and biodiversity. Ebola and avian influenza viruses have been significant warnings. Obviously, this pandemic will not be the last one. As the planet is our common home, the major metaphor to explore is sheltering at this home.
- Invisible Enemies: Coronavirus and Other Hidden Threats, David Shaw AbstractTo say that coronavirus is highly visible is a massive understatement in terms of its omnipresence in our lives and media coverage concerning it yet also clearly untrue in terms of the virus itself. COVID-19 is our invisible enemy, changing our lives radically without ever revealing itself directly. In this paper I explore its invisibility and how it relates and exposes other invisible enemies we are and have been fighting, in many cases without even realizing. First, I analyse the virus itself and how its stealthy nature has transformed our lives. Second, I describe how the invisible epidemic of social media sharing of fake news about the virus worsens the situation further. Third, I explore how the virus has revealed to us what really matters in our lives and has forced us to reevaluate our priorities. Fourth, I go on to explore the underlying structural weaknesses and disparities in society that have been exposed by the virus but previously remained unconsidered for so long that they too have become camouflaged, even if their effects are all too apparent; like the virus, neoliberal capitalism is an invisible enemy that has made prisoners of us all. I conclude by suggesting that the coronavirus pandemic represents a hidden opportunity to overcome perhaps the biggest invisible enemy of all: the moral distance that separates us from others. Only by rendering the rest of humanity morally visible to us can we overcome capitalism and stop treating other people as invisible enemies.
- The Rejuvenation of the Withering Nation State and Bio-power: The New Dynamics of Human Interaction, Abdul Wahab Suri AbstractThe outbreak of COVID-19 comes at the time when a shrinking public sector healthcare is an acknowledged fact in post-colonial societies. The policies adopted by the apparatus of most nation states for the past thirty years or more reveal that providing healthcare to all sections of societies is not a priority. The gradual process of economic liberalization has established “market” as the only legitimate mechanism of the distribution of goods/services as per the efficiency principle. The financial markets are globalized in such a manner that nation states are constantly losing their capacity to perform redistributive functions. State withdrawal from the provision of welfare rights is undermining its moral authority to impose any normative imperative to the people who are being left alone at the mercy of market forces. But the spread of COVID-19 on a global scale has provided an opportunity to the nation state. With the help of healthcare systems, the State has reasserted itself as the ultimate archangel to define human beings and their respective status in the newly emerging nomenclature of the public sphere. In this paper, the rejuvenation of the nation state with respect to bio-power will be discussed in the postcolonial context.
III. Global Perspectives
- Humiliating Whistle-Blowers: Li Wenliang, the Response to Covid-19 and the Call for a Decent Society, Jing-Bao Nie and Carl Elliott AbstractThe question of whether China’s authoritarian response to COVID-19 was ethically justifiable will be debated for many years to come. But one feature of the Chinese response that should not be overlooked is its practice of silencing and humiliating the whistle-blowers who told the truth about the epidemic. In this article, we document the humiliation of Dr Li Wenliang (1986-2020), the most prominent whistle-blower in the Chinese COVID-19 epidemic. Engaging with the thought of Israeli philosopher Avishai Margalit, who argues that humiliation constitutes an injury to a person’s self-respect, we discuss his contention that a decent society is one that fights conditions which constitute a justification for its dependents to consider themselves humiliated. We explore the ways that institutions humiliate whistle-blowers in Western countries as well as in China.
- Rethinking the Central Role of Equity in the Global Governance of Pandemic Response, Oghenowede Eyawo and A.M. Viens ExtractWhile the global governance of pandemic preparedness and response often touts the importance of equity as a moral value and policy goal, our reaction to the COVID19 pandemic should lead us to call this into question. On the one hand, we find the failure of omission—the progression of the COVID-19 crisis threatens to disproportionately impact low- and middle-income countries (LMICs) with vulnerable healthcare systems. On the other hand, we find the failure of commission—high income countries (HICs) battle to buy out ventilators, personal protective equipment, and diagnostic tests on the global market, which freezes out any real possibility of LMICs getting these resources. This lack of collective action is a moral failure that risks losing the gains made in promoting health and health equity globally, and risks calling into question the usefulness of equity-based arguments for responsible governance that were used to justify actions to achieve these gains. We argue that much of pandemic preparedness and response remains focused on the interests, resources, and capacities of HICs and, in the case of COVID-19, requires more than a one-size-fits-all approach.
- Science at Warp Speed: Medical Research, Publication, and Translation During the COVID-19 Pandemic, Wendy Lipworth, Melanie Gentgall, Ian Kerridge, and Cameron Stewart AbstractIn response to the COVID-19 pandemic, there has been a rapid growth in research focused on developing vaccines and therapies. In this context, the need for speed is taken for granted, and the scientific process has adapted to accommodate this. On the surface, attempts to speed up the research enterprise appear to be a good thing. It is, however, important to consider what, if anything, might be lost when biomedical innovation is sped up. In this article we use the case of a study recently retracted from the Lancet to illustrate the potential risks and harms associated with speeding up science. We then argue that, with appropriate governance mechanisms in place (and adequately resourced), it should be quite possible to both speed up science and remain attentive to scientific quality and integrity.
- Learning Lessons from COVID-19 Requires Recognizing Moral Failures, Maxwell Smith and Ross Upshur AbstractThe most powerful lesson learned from the 2013-2016 outbreak of Ebola in West Africa was that we do not learn our lessons. A common sentiment at the time was that Ebola served as a “wake-up call”—an alarm which signalled that an outbreak of that magnitude should never have occurred and that we are ill-prepared globally to prevent and respond to them when they do. Pledges were made that we must learn from the outbreak before we were faced with another. Nearly five years later the world is in the grips of a pandemic of the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) that causes coronavirus disease 2019 (COVID-19). It is therefore of no surprise that we are now yet again hearing that the COVID-19 pandemic serves as the “wake-up call” we need and that there are many lessons to be learned to better prepare us for future outbreaks. Will anything be different this time around? We argue that nothing will fundamentally change unless we truly understand and appreciate the nature of the lessons we should learn from these outbreaks. Our past failures must be understood as moral failures that offer moral lessons. Unless we appreciate that we have a defect in our collective moral attitude toward remediating the conditions that precipitate the emergence of outbreaks, we will never truly learn.
- In the Shadow of Biological Warfare: Conspiracy Theories on the Origins of COVID-19 and Enhancing Global Governance of Biosafety as a Matter of Urgency, Jing-Bao Nie AbstractTwo theories on the origins of COVID-19 have been widely circulating in China and the West respectively, one blaming the United States and the other a highest-level biocontainment laboratory in Wuhan, the initial epicentre of the pandemic. Both theories make claims of biological warfare attempts. According to the available scientific evidence, these claims are groundless. However, like the episodes of biological warfare during the mid-twentieth century, the spread of these present-day conspiracy theories reflects a series of longstanding and damaging trends in the international scene which include deep mistrust, animosities, the power of ideologies such as nationalism, and the sacrifice of truth in propaganda campaigns. Also, the threats associated with biological warfare, bioterrorism, and the accidental leakage of deadly viruses from labs are real and growing. Thus, developing a better global governance of biosafety and biosecurity than exists at present is an urgent imperative for the international community in the broader context of a looming Cold War II. For such a governance, an ethical framework is proposed based upon the triple ethical values of transparency, trust, and the common good of humanity.
IV. Voices from Different Places
- COVID-19 Pandemic: The Circus is Over, for the Moment, Philip Morrissey AbstractThis critical essay responds to the COVID-19 pandemic and subsequent lockdown in Victoria from the perspective of a retired Aboriginal academic and reflects on personal responsibility, Indigenous history, and resilience.
- Fairness, Ethnicity, and COVID-19 Ethics: A Discussion of How the Focus on Fairness in Ethical Guidance During the Pandemic Discriminates Against People From Ethnic Minority Backgrounds, Alexis Paton AbstractRecent weeks have seen an increased focus on the ethical response to the COVID-19 pandemic. Ethics guidance has proliferated across Britain, with ethicists and those with a keen interest in ethics in their professions working to produce advice and support for the National Health Service. The guiding principles of the pandemic have emerged, in one form or another, to favour fairness, especially with regard to allocating resources and prioritizing care. However, fairness is not equivalent to equity when it comes to healthcare, and the focus on fairness means that existing guidance inadvertently discriminates against people from ethnic minority backgrounds. Drawing on early criticisms of existing clinical guidance (for example, the frailty decision tool) and ethical guidance in Britain, this essay will discuss the importance of including sociology, specifically the relationship between ethnicity and health, in any ethical and clinical guidance for care during the pandemic in the United Kingdom. To do otherwise, I will argue, would be actively choosing to allow a proportion of the British population to die for no other reason than their ethnic background. Finally, I will end by arguing why sociology must be a key component in any guidance, outlining how sociology was incorporated into the cross-college guidance produced by the Royal College of Physicians.
- Disability, Disablism, and COVID-19 Pandemic Triage, Jackie Leach Scully AbstractPandemics such as COVID-19 place everyone at risk, but certain kinds of risk are differentially severe for groups already made vulnerable by pre-existing forms of social injustice and discrimination. For people with disability, persisting and ubiquitous disablism is played out in a variety of ways in clinical and public health contexts. This paper examines the impact of disablism on pandemic triage guidance for allocation of critical care. It identifies three underlying disablist assumptions about disability and health status, quality of life, and social utility, that unjustly and potentially catastrophically disadvantage people with disability in COVID-19 and other global health emergencies.
- Gambling With COVID-19 Makes More Sense: Ethical and Practical Challenges in COVID-19 Responses in Communalistic Resource-Limited Africa, David Nderitu and Eunice Kamaara AbstractInformed by evidence from past studies and experiences with epidemics, an intervention combining quarantine, lockdowns, curfews, social distancing, and washing of hands has been adopted as “international best practice” in COVID-19 response. With massive total lockdowns complemented by electronic surveillance, China successfully controlled the pandemic in country within a few months. But would this work for Africa and other communalistic resource poor settings where social togetherness translates to effective sharing of basic needs? What ethical and practical challenges would this pose? How would communalism be translated in special contexts to be useful in contributing to the ultimate common good? This paper uses examples from the current situation of COVID-19 in Kenya to address these questions.
- The COVID-19 Pandemic and Ethics in Mexico Through a Gender Lens, Amaranta Manrique de Lara & María de Jesús Medina AbstractIn Mexico, significant ethical and social issues have been raised by the COVID-19 pandemic. Some of the most pressing issues are the extent of restrictive measures, the reciprocal duties to healthcare workers, the allocation of scarce resources, and the need for research. While policy and ethical frameworks are being developed to face these problems, the gender perspective has been largely overlooked in most of the issues at stake. Domestic violence is the most prevalent form of violence against women, which can be exacerbated during a pandemic: stress and economic uncertainty are triggers for abuse, and confinement limits access to support networks. Confinement also exacerbates the unfair distribution of unpaid labor, which is disproportionately assigned to women and girls, and highlights inequality in the overall labor market. Lack of security measures has resulted in attacks towards health workers, particularly female nurses, due to fear of contamination. Finally, resource results in lack of access to other health necessities, including sexual and reproductive health services. Research across all disciplines to face—and to learn from—this crisis should be done through a gender lens, because understanding the realities of women is essential to understand the pandemic’s true effects in Mexico and the world.
- Clever COVID-19, Clever Citizens-98: Critical and Creative Reflections from Tehran, Toronto, and Sydney, Laura Bisaillon, Mehdi Khosravi, Bahareh Jahandoost & Linda Briskman AbstractOur world suffers. Some people suffer more than others. Since the first part of 2020, ours is justly described as a time of uncertainty, threat, and upheaval. In this article, we offer reflections threaded narratively, told from the specificity of our societal contexts in Iran, Canada, and Australia. What might we learn in the present and anticipated future from people living chronically within conditions of uncertainty and immobility and also those experiencing uncertainty and immobility for the first time? We argue that reflexive comparative analysis bridging social and visual analysis, anchored in embodied conditions of such people, offers a way to learn from responses to COVID-19 while also being an exercise in ethical research practice. This reflection builds on and extends from our scholarly collaborations that have been ongoing since 2015. Our title recognizes this specific virus as stealthy. Importantly, our choice of words identifies resident Iranians—whose experiences were the original impetuses for this paper, and whose lives provide its empirical basis (98 is Iran’s country code)—as equally steely.
V. Bioethical Debates
- Antibodies as Currency: COVID-19’s Golden Passport, Katrina Bramstedt AbstractDue to COVID-19, the fragile economy, travel restrictions, and generalized anxieties, the concept of antibodies as a “declaration of immunity” or “passport” is sweeping the world. Numerous scientific and ethical issues confound the concept of an antibody passport; nonetheless, antibodies can be seen as a potential currency to allow movement of people and resuscitation of global economics. Just as financial currency can be forged, so too is the potential for fraudulent antibody passports. This paper explores matters of science, ethics, and identity theft, as well as the problems of bias and discrimination that could promulgate a world of pandemic “golden passports.”
- Dignity, Autonomy, and Allocation of Scarce Medical Resources During COVID-19, David Kirchhoffer AbstractRuth Macklin argued that dignity is nothing more than respect for persons or their autonomy. During the COVID-19 pandemic, difficult decisions are being made about the allocation of scarce resources. Respect for autonomy cannot justify rationing decisions. Justice can be invoked to justify rationing. However, this leaves an uncomfortable tension between the principles. Dignity is not a useless concept because it is able to account for why we respect autonomy and for why it can be legitimate to override autonomy in times of critical care resource shortages. Dignity affirms the worth of the human individual as a meaning-making embodied subject, who is always in relationship to others, the world, time, and transcendence, and who realises their dignity through their moral behaviour. Such an understanding means people should be helped to make morally right decisions about their own treatment, which may include forgoing potentially beneficial treatment for the good of others. Respect for dignity does not require fulfilling the morally wrong choices of one who insists on treatment at the expense of others. Dignity also protects the discretion of clinicians to make decisions appropriate to their competence by prohibiting the application of broad-based criteria such as age.
- Understanding Ethical and Legal Obligations in a Pandemic: A Taxonomy of “Duty” for Health Practitioners, Linda Sheahan and Scott Lamont AbstractFrom the ethics perspective, “duty of care” is a difficult and contested term, fraught with misconceptions and apparent misappropriations. However, it is a term that clinicians use frequently as they navigate COVID-19, somehow core to their understanding of themselves and their obligations, but with uncertainty as to how to translate or operationalize this in the context of a pandemic. This paper explores the “duty of care” from a legal perspective, distinguishes it from broader notions of duty on professional and personal levels, and proposes a working taxonomy for practitioners to better understand the concept of “duty” in their response to COVID-19.
- Advancing Global Health Equity in the COVID-19 Response: Beyond Solidarity, Stephanie Johnson AbstractIn the coming weeks and months SARS-CoV-2 may ravage countries with weak health systems and populations disproportionately affected by HIV, tuberculosis (TB), and other infectious diseases. Without safeguards and proper attention to global health equity and justice, the effects of this pandemic are likely to exacerbate existing health and socio-economic inequalities. This paper argues that achieving global health equity in the context of COVID-19 will require that notions of reciprocity and relational equity are introduced to the response.
- Coronavirus Human Infection Challenge Studies: Assessing Potential Benefits and Risks, Euzebiusz Jamrozik, George Heriot & Michael Selgelid AbstractHuman infection challenge studies (HCS) have been proposed as a means to accelerate SARS-CoV2 vaccine development and thereby help to mitigate a prolonged global public health crisis. A key criterion for the ethical acceptability of SARS-CoV2 HCS is that potential benefits outweigh risks. Although the assessment of risks and benefits is meant to be a standard part of research ethics review, systematic comparisons are particularly important in the context of SARS-CoV2 HCS in light of the significant potential benefits and harms at stake as well as the need to preserve public trust in research and vaccines. In this paper we explore several considerations that should inform systematic assessment of SARS-CoV-2 HCS. First, we detail key potential benefits of SARS-CoV-2 HCS including, but not limited to, those related to the acceleration of vaccine development. Second, we identify where modelling is needed to inform risk-benefit (and thus ethical) assessments. Modelling will be particularly useful in (i) comparing potential benefits and risks of HCS with those of vaccine field trials under different epidemiological conditions and (ii) estimating marginal risks to HCS participants in light of the background probabilities of infection in their local community. We highlight interactions between public health policy and research priorities, including situations in which research ethics assessments may need to strike a balance between competing considerations.
VI. Clinical Implications
- An Ethics Framework for Making Resource Allocation Decisions Within Clinical Care: Responding to COVID-19, Angus Dawson, David Isaacs, Melanie Jansen, Christopher Jordens, Ian Kerridge, Ulrik Kihlbom, Henry Kilham, Anne Preisz, Linda Sheahan, George Skowronski AbstractOn March, 24, 2020, 818 cases of COVID-19 had been reported in New South Wales, Australia, and new cases were increasing at an exponential rate. In anticipation of resource constraints arising in clinical settings as a result of the COVID-19 pandemic, a working party of ten ethicists (seven clinicians and three full-time academics) was convened at the University of Sydney to draft an ethics framework to support resource allocation decisions. The framework guides decision-makers using a question-and-answer format, in language that avoids philosophical and medical technicality. The working party met five times over the following week and then submitted a draft Framework for consideration by two groups of intensivists and one group of academic ethicists. It was also presented to a panel on a national current affairs programme. The Framework was then revised on the basis of feedback from these sources and made publicly available online on April 3, ten days after the initial meeting. The framework is published here in full to stimulate ongoing discussion about rapid development of user-friendly clinical ethics resources in ongoing and future pandemics.
- Building an Ethics Framework for COVID-19 Resource Allocation: The How and the Why, Angus Dawson AbstractThis paper expands on “An Ethics Framework for Making Resource Allocation Decisions within Clinical Care: Responding to COVID-19,” which is also published in this special issue of the Journal of Bioethical Inquiry. I first describe and explain the steps we took to develop this framework, drawing on previous experience and literature to explain what frameworks can and cannot do. I distinguish frameworks from other kinds of guidance and justify why our framework takes the form it does. Our key aim was to help answer practical questions faced by frontline clinicians. I then explain some of the normative issues that shape the content of the framework itself. Here, I engage critically with the resource allocation literature and justify the particular positions that we take in the framework. Although we undertook this work to address resource allocation decisions anticipated during the unfolding COVID-19 pandemic, it will also serve as an example for others who wish to design practical ethics frameworks for other bioethical issues that will emerge in the future.
- Systems of Care in Crisis: The Changing Nature of Palliative Care During COVID-19, Michael Chapman, Beth Russell, Jennifer Philip ExtractEvident within the many lessons that the novel coronavirus (COVID-19) pandemic has taught us is the fragility of the systems that enable us to care for each other. Care systems, the dynamic interconnections and processes involving care providers and care recipients, result in the practices that we recognize as “care.” These systems emerge from the needs of human bodies, the recognition and response to these needs by people and communities, the communication that supports these connections, and the meaning attributed to this care. These care systems are complex and develop through relationships and interactions (Hodiamont et al. 2019). We cannot understand them or predict their movement just by focusing on the individual parts (such as the people) involved (Glouberman and Zimmerman 2004). They are also adaptive. These care systems are influenced by and respond to the changes that occur within and around them, sometimes resulting in the emergence of new behaviours and approaches. Response can lead to some systems becoming more resilient to change and to other disrupting or even dispersing. How care is provided within and through these systems varies. But such systems remain an omnipresent shifting and often unnoticed tapestry of connections and structures engendering our experience (Maturana and Varela 1980).
- Family Presence for Patients and Separated Relatives During COVID-19: Physical, Virtual, and Surrogate, Teck Chuan Voo, Mathavi Senguttuvan, Clarence C. Tam AbstractDuring an outbreak or pandemic involving a novel disease such as COVID-19, infected persons may need to undergo strict medical isolation and be separated from their families for public health reasons. Such a practice raises various ethical questions, the characteristics of which are heightened by uncertainties such as mode of transmission and increasingly scarce healthcare resources. For example, under what circumstances should non-infected parents be allowed to stay with their infected children in an isolation facility? This paper will examine ethical issues with three modes of “family presence” or “being there or with” a separated family member during the current COVID-19 pandemic: physical, virtual, and surrogate. Physical visits, stays, or care by family members in isolation facilities are usually prohibited, discouraged, or limited to exceptional circumstances. Virtual presence for isolated patients is often recommended and used to enable communication. When visits are disallowed, frontline workers sometimes act as surrogate family for patients, such as performing bedside vigils for dying patients. Drawing on lessons from past outbreaks such as the 2002-2003 SARS epidemic and the recent Ebola epidemic in West Africa, we consider the ethical management of these modes of family presence and argue for the promotion of physical presence under some conditions.
VII. Surveillance and the Panopticon
- COVID-19—Extending Surveillance and the Panopticon, Danielle Couch, Priscilla Robinson, Paul Komesaroff AbstractSurveillance is a core function of all public health systems. Responses to the COVID-19 pandemic have deployed traditional public health surveillance responses, such as contact tracing and quarantine, and extended these responses with the use of varied technologies, such as the use of smartphone location data, data networks, ankle bracelets, drones, and big data analysis. Applying Foucault’s (1979) notion of the panopticon, with its twin focus on surveillance and self-regulation, as the preeminent form of social control in modern societies, we examine the increasing levels of surveillance enacted during this pandemic and how people have participated in, and extended, this surveillance, self-regulation, and social control through the use of digital media. Consideration is given to how such surveillance may serve public health needs and/or political interests and whether the rapid deployment of these extensive surveillance mechanisms risks normalizing these measures so that they become more acceptable and then entrenched post-COVID-19.
- Accelerating the De-Personalisation of Medicine: The Ethical Toxicities of COVID-19, Mark Arnold and Ian Kerridge AbstractThe COVID-19 pandemic has, of necessity, demanded the rapid incorporation of virtual technologies which, suddenly, have superseded the physical medical encounter. These imperatives have been implemented in advance of evaluation, with unclear risks to patient care and the nature of medical practice that might be justifiable in the context of a pandemic but cannot be extrapolated as a new standard of care. Models of care fit for purpose in a pandemic should not be generalized to reconfigure medical care as virtual by default, and personal by exception at the conclusion of the emergency.
- Applying a Precautionary Approach to Mobile Contact Tracing for COVID-19: The Value of Reversibility, Niels Nijsingh, Anne van Bergen and Verina Wild AbstractThe COVID-19 pandemic presents unprecedented challenges to public health decision-making. Specifically, the lack of evidence and the urgency with which a response is called for, raise the ethical challenge of assessing how much (and what kind of) evidence is required for the justification of interventions in response to the various threats we face. Here we discuss the intervention of introducing technology that aims to trace and alert contacts of infected persons—contact tracing (CT) technology. Determining whether such an intervention is proportional is complicated by complex trade-offs and feedback loops. We suggest that the resulting uncertainties necessitate a precautionary approach. On the one hand, precautionary reasons support CT technology as a means to contribute to the prevention of harms caused by alternative interventions, or COVID-19 itself. On the other hand, however, both the extent to which such technology itself present risks of serious harm, as well as its effectiveness, remain unclear. We therefore argue that a precautionary approach should put reversibility of CT technology at the forefront. We outline several practical implications.
- Pandemic Surveillance and Racialized Subpopulations: Mitigating Vulnerabilities in COVID-19 Apps, Tereza Hendl, Ryoa Chung, Verina Wild AbstractDebates about effective responses to the COVID-19 pandemic have emphasized the paramount importance of digital tracing technology in suppressing the disease. So far, discussions about the ethics of this technology have focused on privacy concerns, efficacy, and uptake. However, important issues regarding power imbalances and vulnerability also warrant attention. As demonstrated in other forms of digital surveillance, vulnerable subpopulations pay a higher price for surveillance measures. There is reason to worry that some types of COVID-19 technology might lead to the employment of disproportionate profiling, policing, and criminalization of marginalized groups. It is, thus, of crucial importance to interrogate vulnerability in COVID-19 apps and ensure that the development, implementation, and data use of this surveillance technology avoids exacerbating vulnerability and the risk of harm to surveilled subpopulations, while maintaining the benefits of data collection across the whole population. This paper outlines the major challenges and a set of values that should be taken into account when implementing disease surveillance technology in the pandemic response.
- COVID-19 and Contact Tracing Apps: Ethical Challenges for a Social Experiment on a Global Scale, Federica Lucivero, Nina Hallowell, Stephanie Johnson, Barbara Prainsack, Gabrielle Samuel, Tamar Sharon AbstractMobile applications are increasingly regarded as important tools for an integrated strategy of infection containment in post-lockdown societies around the globe. This paper discusses a number of questions that should be addressed when assessing the ethical challenges of mobile applications for digital contact tracing of COVID-19: Which safeguards should be designed in the technology? Who should access data? What is a legitimate role for “Big Tech” companies in the development and implementation of these systems? How should cultural and behavioural issues be accounted for in the design of these apps? Should use of these apps be compulsory? What does transparency and ethical oversight mean in this context? We demonstrate that responses to these questions are complex and contingent and argue that if digital contract-tracing is used, then it should be clear that this is on a trial basis and its use should be subject to independent monitoring and evaluation.
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Image: “This illustration, created at the Centers for Disease Control and Prevention (CDC), reveals ultrastructural morphology exhibited by coronaviruses.” [CDC / Alissa Eckert, MSMI; Dan Higgins, MAMS (2020)]