Running Toward Disasters: One Bioethicist's Experience in Translational Ethics.

Translational ethics is a practice that aims to apply bioethics insights and process to the real-world contexts of clinical medicine, but also government policy, systems issues, and public health. This work has been a career focus for a relatively small number of bioethicists over the years, but it has drawn greater attention due to the pandemic and a greater realization of the impact of health inequities and systemic injustice. This essay discusses the pathway, rewards, and challenges of translational bioethics as experienced by one bioethicist working with state and national groups on a range of translational ethics issues, often related to public health disasters. There is much remaining work to be done, and the goal of the essay is to encourage rising bioethicists to engage in translational bioethics.

A Tale of Two Bioethics.

Phase 1 drug trials-first-in-human tests of new pharmaceuticals- are necessary for FDA approval, and healthy volunteers are necessary to conduct those trials. Bioethicists are rightly concerned with the morally problematic aspects of these trials: Are risks and benefits balanced? Are would-be volunteers sufficiently informed, and have they given proper consent? But these are not the only, or even the most worrisome, ethical problems with Phase 1 research. In Adverse Events (2020), Jill Fisher looks beyond these ordinary bioethical concerns to the moral complications associated with the motivations of healthy volunteers and the demands of the everyday work of running those trials. Her work is the latest example of a much needed "second bioethics." Unlike the "first bioethics," this approach views health-care institutions from the outside, examining the structural and organizational sources that generate the ethical quandaries bioethicists are called upon to mediate and the ethical problems they often fail to see. Adverse Events makes clear that the moral problems of medicine can only be addressed by supporting bioethics of both types-the first and the second.

The Lifeboat at World's End: Moving Beyond Crisis Standards of Care.

It may be too late to avoid the climate crisis, likely to be humanity's most expensive, widespread, and enduring catastrophe. This is a qualitatively different kind of catastrophe, in which increased costs, decreased revenue, and no possibility of bailout force communities to harshly cut budgets, especially in health care. Little is known about making such brutal cuts fair or efficient, nor how to help the public accept them. The crisis presents an opportunity for bioethicists to play a crucial role, but one for which traditional approaches are inherently inadequate. Although often dismissed as heartless, Garrett Hardin's "lifeboat ethics" started a conversation about making ethical choices in global disasters-where all options are painful and unacceptable-and may provide guidance. Bioethics during the climate crisis must focus on communities rather than individuals and help survivors grieve the terrible consequences. Because today's choices will affect many generations, with the burdens falling most heavily on poor communities, we have to construct a radical bioethics to help tomorrow's health care become green, efficient, and fair.

Conspiracy theories and clinical decision-making.

When a patient's treatment decisions are the product of delusion, this is often taken as a paradigmatic case of undermined decisional capacity. That is to say, when a patient refuses treatment on the basis of beliefs that in no way reflect reality, clinicians and ethicists tend to agree that their refusal is not valid. During the COVID-19 pandemic, however, we have witnessed many patients refuse potentially life-saving interventions not based on delusion but on conspiracy beliefs. Importantly, many of the beliefs espoused by conspiracy theorists resemble delusions in a number of relevant ways. For instance, conspiracy beliefs often posit states of affairs that could not possibly exist in the world, they are recalcitrant in the face of disconfirming evidence, and they tend to put the believer in a state of paranoia. Given these similarities, how should we think about conspiracy theorists' capacity for making clinical decisions? In this paper, I attempt to answer this question by first offering an account of just what makes some set of beliefs count as a conspiracy theory. Second, I attempt to disambiguate conspiracy beliefs from delusions by exploring important conceptual and psychological features of both. Finally, I apply standard criteria for assessing a patient's decision-making capacity to instances of conspiracy beliefs and argue that, although the picture is muddy, there may be cases in which conspiracy beliefs undermine capacity. I end by exploring the implications that this might have for surrogate decision-making and addressing potential objections.

What Bioethicists Need to Know About the Social Determinants of Health-and Why.

What more can be said about COVID-19 and the social determinants of health? This article describes neglected perspectives that derive from the history of social epidemiology, a field that identifies the social etiology of disease and variations in disease incidence among people differentially located in the social structure. The "discovery" of social determinants of diseases like COVID-19 is nothing new for epidemiology: debate over how to analyze structural determinants versus individual-level risk factors persisted throughout the 19th and 20th centuries. By the late 20th century, research had highlighted fundamental causes of health disparities, such as social conditions and structural racism; these are structural factors, embedded in the social fabric of life. Measurement of structured inequalities within systems faces complex and challenging problems, as research aims to better account for these lived realities at different levels of analysis and as multiple factors merge to influence outcomes (revealed in intersectionality theory). At each of these intersections, there are opportunities for bioethicists to consider their ethical implications. It is imperative to understand the social and ethical roots of our present conversations about health inequalities, in order to partner intelligently with researchers on the forefront of advocating for change.

Rethinking the Principle of Justice for Marginalized Populations During COVID-19.

In the face of limited resources during the COVID-19 pandemic response, public health experts and ethicists have sought to apply guiding principles in determining how those resources, including vaccines, should be allocated.

Public Preferences for Allocation Principles for Scarce Medical Resources in the COVID-19 Pandemic in Korea: Comparisons With Ethicists' Recommendations.

OBJECTIVES: The purpose of this study was to investigate public preferences regarding allocation principles for scarce medical resources in the coronavirus disease 2019 (COVID-19) pandemic, particularly in comparison with the recommendations of ethicists. METHODS: An online survey was conducted with a nationally representative sample of 1509 adults residing in Korea, from November 2 to 5, 2020. The degree of agreement with resource allocation principles in the context of the medical resource constraints precipitated by the COVID-19 pandemic was examined. The results were then compared with ethicists' recommendations. We also examined whether the perceived severity of COVID-19 explained differences in individual preferences, and by doing so, whether perceived severity helps explain discrepancies between public preferences and ethicists' recommendations. RESULTS: Overall, the public of Korea agreed strongly with the principles of "save the most lives," "Koreans first," and "sickest first," but less with "random selection," in contrast to the recommendations of ethicists. "Save the most lives" was given the highest priority by both the public and ethicists. Higher perceived severity of the pandemic was associated with a greater likelihood of agreeing with allocation principles based on utilitarianism, as well as those promoting and rewarding social usefulness, in line with the opinions of expert ethicists. CONCLUSIONS: The general public of Korea preferred rationing scarce medical resources in the COVID-19 pandemic predominantly based on utilitarianism, identity and prioritarianism, rather than egalitarianism. Further research is needed to explore the reasons for discrepancies between public preferences and ethicists' recommendations.

Resuscitating Patient Rights during the Pandemic: COVID-19 and the Risk of Resurgent Paternalism.

The COVID-19 Pandemic a stress test for clinical medicine and medical ethics, with a confluence over questions of the proportionality of resuscitation. Drawing upon his experience as a clinical ethicist during the surge in New York City during the Spring of 2020, the author considers how attitudes regarding resuscitation have evolved since the inception of do-not-resuscitate (DNR) orders decades ago. Sharing a personal narrative about a DNR quandry he encountered as a medical intern, the author considers the balance of patient rights versus clinical discretion, warning about the risk of resurgent physician paternalism dressed up in the guise of a public health crisis.

The bioethics of loneliness.

This article poses an invitation for bioethicists to engage with loneliness as a bioethics and public health concern. I argue that loneliness is a relevant issue for bioethicists for three main reasons: it causes ill-health; particularly in the age of Covid-19, it is becoming prominent on the clinical and public health agenda, affecting millions worldwide; and it engenders several ethical and philosophical questions as a social determinant of health with a rich conceptual background. In what follows I first review the link between loneliness and ill-health and argue that it should concern bioethicists because of this link. I also demonstrate how pertinent the issue of loneliness is being considered nowadays, and mark this as another reason for bioethicists to become engaged. I then move on to define loneliness and its various forms, drawing from modern and contemporary philosophers. The way we choose to cope with the pandemic of loneliness depends in part on its theoretical underpinnings, as well as its empirical scope. Theory thus combines with empirical data in order to devise and implement a rational public health policy, necessitating the kind of interdisciplinary approach that is the bedrock of bioethics. I conclude by suggesting future areas of research and recommendations.

Taking the burden off: a study of the quality of ethics consultation in the time of COVID-19.

BACKGROUND: The quality of ethics consults is notoriously difficult to measure. Survey-based assessments cannot capture nuances of consultations. To address this gap, we conducted interviews with health professionals who requested ethics consults during the initial phase of the COVID-19 pandemic. METHOD: Healthcare professionals requesting ethics consultation between March 2020 and May 2020 at a tertiary academic medical centre were eligible to participate. We asked participants to comment on the consults they called and thematically analysed responses to identify features associated with optimal quality consultations. RESULTS: Of 14 healthcare providers, 8 (57%) were women and professions were as follows: 11 (79%) medical doctors, 1 (7%) social worker, 1 (7%) physician assistant and 1 (7%) nurse practitioner. Two aspects of quality emerged: satisfaction and value. Themes within the domain of satisfaction included: responsiveness of the ethics consultant, willingness to consult, institutional role of the ethics service and identifying areas for improvement. When describing value, respondents spoke of the intrapersonal and interpersonal worth of consultation. CONCLUSION: Participants were generally satisfied with ethics consultation services, similar to opinions of those found in pre-COVID-19 survey studies. Our qualitative approach allowed for a richer exploration of the value of ethics consultation during the pandemic and has implications for ethics consultation services more broadly. Ethics consultation-emphasising both the process and outcome-created valuable moral spaces, promoting thoughtful and ethical responses to dilemmas in patient care. Future assessments should incorporate patient and family/surrogate perspectives and explore the domain of education as an additional quality measure.

Triaging ethical issues in the coronavirus pandemic: how to prioritize bioethics research during public health emergencies.

Much of the ethical discourse concerning the coronavirus pandemic has focused on the allocation of scarce resources, be it potentially beneficial new treatments, ventilators, intensive care beds, or oxygen. Somewhat ironically, the more important ethical issues may lie elsewhere, just as the more important medical issues do not concern intensive care or treatment for COVID-19 patients, but rather the diversion towards these modes of care at the expense of non-Covid patients and treatment. In this article I explore how ethicists can and should prioritize which ethical issues to deal with, and develop a method of triage for identification and prioritization of ethical issues both in the next public health emergency and in bioethics more widely.

Guidance for Medical Ethicists to Enhance Social Cooperation to Mitigate the Pandemic.

The Covid-19 pandemic has presented major challenges to society, exposing preexisting ethical weaknesses in the modern social fabric's ability to respond. Distrust in government and a lessened authority of science to determine facts have both been exacerbated by the polarization and disinformation enhanced by social media. These have impaired society's willingness to comply with and persevere with social distancing, which has been the most powerful initial response to mitigate the pandemic. These preexisting weaknesses also threaten the future acceptance of vaccination and contact tracing, two other tools needed to combat epidemics. Medical ethicists might best help in this situation by promoting truth-telling, encouraging the rational adjudication of facts, providing transparent decision-making and advocating the virtue of cooperation to maximize the common good. Those interventions should be aimed at the social level. The same elements of emphasizing cooperation and beneficence also apply to the design of triage protocols for when resources are overwhelmed. A life-stages approach increases beneficence and reduces harms. Triage should be kept as simple and straightforward as reasonably possible to avoid unwieldly application during a pandemic.

Race, Power, and COVID-19: A Call for Advocacy within Bioethics.

Events in 2020 have sparked a reimagination of how both individuals and institutions should consider race, power, health, and marginalization in society. In a response to these developments, we examine the current and past limitations of the ways in which bioethicists have considered race and, more generally, discourses of marginalization. We argue that the foundational principle of justice necessitates that bioethics, as an institution, maintain an active voice against systemic injustice. To carry out this charge, bioethics as a field should promote alternative narratives-"counter storytelling"-to the mainstream voices that have traditionally been heard and accepted, largely without opposition. Additionally, we engage with both Post-Colonial and Critical Race Theory, which we believe are important tools for bioethics in pursuit of equity. Ultimately, we advocate for a proactive form of bioethics that actively resists and denounces injustice and which considers a much wider variety of voices about justice than bioethics has historically considered.

Ethical Challenges in COVID-19 Biospecimen Research: Perspectives From Institutional Review Board Members and Bioethicists.

Biospecimen research is a prominent investigative strategy that aims to provide novel insights into coronavirus disease 2019 (COVID-19), inform clinical trials, and develop effective, life-saving treatments. However, COVID-19 biospecimen research raises accompanying ethical concerns and practical challenges for investigators and participants. In this special article, we discuss the ethical issues that are associated with autonomy, beneficence, and justice in COVID-19 biospecimen research and describe strategies to manage the practical challenges, with an emphasis on protecting the rights and welfare of human research participants during a pandemic response. Appropriate institutional review board oversight and bioethics guidance for COVID-19 biospecimen research must maintain their focus on protecting the rights and welfare of research participants, despite the urgent need for more knowledge about the virus and the threat it poses to communities and nations.

Medical Mistrust and Enduring Racism in South Africa.

In this essay, I argue that exploring institutional racism also needs to examine interactions and communications between patients and providers. Exchange between bioethicists, social scientists, and life scientists should emphasize the biological effects-made evident through health disparities-of racism. I discuss this through examples of patient-provider communication in fertility clinics in South Africa and the ongoing COVID-19 pandemic to emphasize the issue of mistrust between patients and medical institutions. Health disparities and medical mistrust are interrelated problems of racism in healthcare provision.

Italy in a Time of Emergency and Scarce Resources: The Need for Embedding Ethical Reflection in Social and Clinical Settings.

The COVID-19 virus is severely testing the Italian healthcare system, as the requests for intensive treatment are greater than the real capacity of the system to receive patients. Given this emergency situation, it follows that citizens are limited in their freedom of movement in order to limit infection, and that in hospitals a significant number of critical situations must be faced. This brief contribution aims to offer a reflection on the public and clinical role of the bioethicist: a figure able to promote dialogue between the world of medicine and the community, and to face ethical dilemmas even in emergent clinical settings.