Issue 19(2)

Issue 19(2)

Journal of Bioethical Inquiry, Volume 19, Issue 2

Free Access Editorial: Nature of Suffering, Anarchy, Life and Liberty: Is the Cure Worse Than the Disease?

Michael Ashby

As previously argued in this column, the COVID-19 pandemic has revealed and magnified all the old potholes, the existing inequalities, deficits, state failures, discrimination, and vulnerabilities, rather than, for the most part, creating new problems. It is true that all people across the world–including doctors, nurses and other health workers–have had to learn a new respect for infectious diseases, and massively revise their day-to-day anti-contagion measures. Infections, which seemed to have been overtaken by cancer and chronic diseases, can and do kill you, especially if you are elderly and/or have underlying health problems. Perhaps the bigger but less visible impact has been on regimes of truth, and the culture wars around prevention of death on the one hand and individual freedom on the other.

The pandemic has certainly raised serious issues about compliance and state power. Opposition to COVID-19 public health measures is mainly seen as fringe mob rule, with violent undertones, epitomised by the awful scenes from the storming of the US Capitol in 2021. Violent libertarian extremist behaviour has given philosophical anarchy a bad name that makes it hard to raise important questions about the extent of state power, and the rights of individuals to dissent and protest. (to move beyond the purely pejorative, for a history of anarchy as political movement, see Marshall 1993).

Open Access Recent Developments: Clinical Software and Bad Decisions: The “Practice Fusion” Settlement and Its Implications

Megan Prictor

This article describes a recent United States (U.S.) government settlement with a company producing clinical decision support software (CDSS) for kickbacks the company received from a pharmaceutical company intended to drive up opioid prescribing. It reflects on the legal avenues pursued by the government in the matter and considers the implications of the case for regulation of clinical software design in the Australian healthcare context.

Open Access Critical Perspectives: An Ethical Framework for Visitation of Inpatients Receiving Palliative Care in the COVID-19 Context

Bethany Russell, Leeroy William, Michael Chapman

Human connection is universally important, particularly in the context of serious illness and at the end of life. The presence of close family and friends has many benefits when death is close. Hospital visitation restrictions during the Coronavirus (COVID-19) pandemic therefore warrant careful consideration to ensure equity, proportionality, and the minimization of harm. The Australian and New Zealand Society for Palliative Medicine COVID-19 Special Interest Group utilized the relevant ethical and public health principles, together with the existing disease outbreak literature and evolving COVID-19 knowledge, to generate a practical framework of visiting restrictions for inpatients receiving palliative and end-of-life care. Expert advice from an Infectious Diseases physician ensured relevance to community transmission dynamics. Three graded levels of visitor restrictions for inpatient settings are proposed, defining an appropriate level of minimum access. These depend upon the level of community transmission of COVID-19, the demand on health services, the potential COVID-19 status of the patient and visitors, and the imminence of the patient’s death. This framework represents a cohesive, considered, proportionate, and ethically robust approach to improve equity and consistency for inpatients receiving palliative care during the COVID-19 pandemic and may serve as a template for future disease outbreaks.

Original Research: Addressing Suffering in Infants and Young Children Using the Concept of Suffering Pluralism

Amir M. Zayegh

Despite the central place of suffering in medical care, suffering in infants and nonverbal children remains poorly defined. There are epistemic problems in the detection and treatment of suffering in infants and normative problems in determining what is in their best interests. A lack of agreement on definitions of infant suffering leads to misunderstanding, mistrust, and even conflict amongst clinicians and parents. It also allows biases around intensive care and disability to (mostly unconsciously) affect medical decision-making on behalf of infants. In this paper, I propose the concept of suffering pluralism, which is a novel multidimensional view of infant suffering based on subjective and objective components. The concept of suffering pluralism is more inclusive of the multiple ways in which infant suffering can occur. It acknowledges and defines a subjective component to infant suffering, while also focusing moral attention on objective well-being by describing it using the language of suffering. This concept allows us to better weigh up subjective and objective components of well-being. It also encourages clarity and consistency in claiming suffering, which is likely to improve communication and reduce conflict in medical decision-making for unwell infants and children. I will end by exploring possible critiques and limitations of this concept.

Open Access Original Research: Respecting Older Adults: Lessons from the COVID-19 Pandemic

Cristina Voinea, Tenzin Wangmo, Constantin Vică

The COVID-19 pandemic has exacerbated many social problems and put the already vulnerable, such as racial minorities, low-income communities, and older individuals, at an even greater risk than before. In this paper we focus on older adults’ well-being during the COVID-19 pandemic and show that the risk-mitigation measures presumed to protect them, alongside the generalization of an ageist public discourse, exacerbated the pre-existing marginalization of older adults, disproportionately affecting their well-being. This paper shows that states have duties to adopt and put into practice redress measures to compensate for the negative consequences of COVID-19 public health policies on older adults’ overall well-being. These duties flow from the minimal ethical requirement of respect for persons. We show that respect is a morally basic attitude that presupposes taking the others’ interests into account, with the aim of advancing their well-being. This duty is not limited to kinship, relatives, and friends but it extends to states and the rest of the civil society. In the conclusion, we draw lessons from the COVID-19 pandemic and sketch some redress measures that could compensate for the decrease in older adults’ well-being as a result of the adoption of measures to contain the spread of the virus.

Open Access Original Research: Enhancing Gender

Hazem Zohny, Brian D. Earp, Julian Savulescu

Transgender healthcare faces a dilemma. On the one hand, access to certain medical interventions, including hormone treatments or surgeries, where desired, may be beneficial or even vital for some gender dysphoric trans people. But on the other hand, access to medical interventions typically requires a diagnosis, which, in turn, seems to imply the existence of a pathological state—something that many transgender people reject as a false and stigmatizing characterization of their experience or identity. In this paper we argue that developments from the human enhancement debate can help clarify or resolve some of the conceptual and ethical entanglements arising from the apparent conflict between seeking medicine while not necessarily suffering from a pathology or disorder. Specifically, we focus on the welfarist account of human enhancement and argue it can provide a useful conceptual framework for thinking about some of the more contentious disagreements about access to transgender healthcare services.

Open Access Original Research: HIV Testing Autonomy: The Importance of Relationship Factors in HIV Testing to People in Lusaka and Chongwe, Zambia

Kasoka Kasoka, Matthew Weait

In recent times, informed consent has been adopted worldwide as a cornerstone to ensure autonomy during HIV testing. However, there are still ongoing debates on whether the edifice on which informed consent requirements are grounded, that is, personal autonomy, is philosophically, morally, and practically sound, especially in countries where HIV is an epidemic and/or may have a different ontological perspective or lived reality. This study explores the views of participants from Zambia. In-depth and focus group discussions were conducted at various locations in Lusaka and Chongwe, Zambia. Participants came from various demographics, including people living with HIV (PLHIV), healthcare professionals and workers, policymakers, pregnant women, churchgoers, teachers, rural-based persons, and police officers. Data were manually analysed by conducting inductive and deductive thematic analyses. Results show that participants were not in favour of HIV policies that promote personal autonomy at the expense of pursuit of the common good. Participants viewed interdependence, not autonomy, as an essential characteristic of being human. The participants’ views have a realistic potential to provide a contextual and appropriate ethical, respectful, and realistic foundation for HIV testing policies.

Original Research: The Reasonableness Standard for Conscientious Objection in Healthcare

Massimo Reichlin

In complex, pluralistic societies, different views concerning the moral duties of healthcare professionals inevitably exist: according to some accounts, doctors can and should cooperate in performing abortion or physician-assisted suicide, while according to others they should always defend human life and protect their patients’ health. It is argued that the very plurality of responses presently given to questions such as these provides a liberal argument in favour of conscientious objection (CO), as an attempt to deal with moral diversity by protecting both the professionals’ claim to moral integrity and the patients’ claim to receive lawful and safe medical treatments. A moderate view on CO is defended, according to which none of these claims can be credited with unconditional value. Claims to CO by healthcare professionals can be justified but must be subjected to a reasonableness standard. Both the incompatibility of CO with the medical profession and its unconditional sanctioning by conscience absolutism are therefore rejected. The paper contributes to the definition of the conditions of such reasonableness, particularly by stressing the role played by conceptions of good medicine in discriminating claims to CO; it is argued that respecting these conditions prevents from having the negative consequences dreaded by critics. The objection according to which accepting the physician’s duty to inform and refer is inconsistent with the professed value of moral integrity is also discussed.

Open Access Original Research: The Thailand Cave Rescue: General Anaesthesia in Unique Circumstances Presents Ethical Challenges for the Rescue Team

Mark A. Irwin

In 2018, the remarkable rescue of twelve young boys and their football coach trapped in a flooded cave in Thailand captured worldwide attention. The rescue required the boys to be dived out of the cave system while fully anaesthetized which presented unique practical and ethical challenges for the rescue team. Major departures from normal anaesthetic practice were required. Taking anaesthetized children underwater was unprecedented, complex, and dangerous. To do this underground in a flooded cave meant the risks were extreme. Using a principlist approach, this essay will outline the rescue plan highlighting the ethical dilemmas faced by the rescue team. Informed consent and full disclosure of information are justifiably waived in emergency disaster scenarios. Beneficence as a guiding principle becomes a major challenge when all rescue options appear destined to cause likely fatalities of healthy young boys. Importantly, virtues and virtue ethics also have a vital role to play when confronting and dealing with ethical challenges in disaster scenarios—this will be discussed with particular reference to the cave rescue.

Original Research: The Principle of the Primacy of the Human Subject and Minimal Risk in Non-Beneficial Paediatric Research

Joanna Różyńska

Non-beneficial paediatric research is vital to improving paediatric healthcare. Nevertheless, it is also ethically controversial. By definition, subjects of such studies are unable to give consent and they are exposed to risks only for the benefit of others, without obtaining any clinical benefits which could compensate those risks. This raises ethical concern that children participating in non-beneficial research are treated instrumentally; that they are reduced to mere instruments for the benefit of science and society. But this would make the research incompatible with the widely endorsed principle of the primacy of the human subject (henceforth PP), which stipulates that the interests of the participating individual should prevail over the interests of science and society. This paper deals with this conflict. It analyses solutions to this problem developed in the literature, and shows that they are unsuccessful. Finally, it offers a new idea of how to reconcile the conduct of non-beneficial paediatric research with the PP. The paper argues for a new formula of the PP, and shows that it implies a specific non-comparative definition of the minimal risk threshold.

Original Research: Should Doctors Offer Biomarker Testing to Those Afraid to Develop Alzheimer’s Dementia?

Marthe Smedinga, Eline M. Bunnik, Edo Richard & Maartje H. N. Schermer

An increasing number of people seek medical attention for mild cognitive symptoms at older age, worried that they might develop Alzheimer’s disease. Some clinical practice guidelines suggest offering biomarker testing in such cases, using a brain scan or a lumbar puncture, to improve diagnostic certainty about Alzheimer’s disease and enable an earlier diagnosis. Critics, on the other hand, point out that there is no effective Alzheimer treatment available and argue that biomarker tests lack clinical validity. The debate on the ethical desirability of biomarker testing is currently polarized; advocates and opponents tend to focus on their own line of arguments. In this paper, we show how the method of reflective equilibrium (RE) can be used to systematically weigh the relevant arguments on both sides of the debate to decide whether to offer Alzheimer biomarker testing. In the tradition of RE, we reflect upon these arguments in light of their coherence with other argumentative elements, including relevant facts (e.g. on the clinical validity of the test), ethical principles, and theories on societal ideals or relevant concepts, such as autonomy. Our stance in the debate therefore rests upon previously set out in-depth arguments and reflects a wide societal perspective.

Original Research: Treating Workers as Essential Too: An Ethical Framework for Public Health Interventions to Prevent and Control COVID-19 Infections among Meat-processing Facility Workers and Their Communities in the United States 

Kelly K. Dineen, Abigail Lowe, Nancy E. Kass, Lisa M. Lee, Matthew K. Wynia, Teck Chuan Voo, Seema Mohapatra, Rachel Lookadoo, Athena K. Ramos, Jocelyn J. Herstein, Sara Donovan, James V. Lawler, John J. Lowe, Shelly Schwedhelm & Nneka O. Sederstrom

Meat is a multi-billion-dollar industry that relies on people performing risky physical work inside meat-processing facilities over long shifts in close proximity. These workers are socially disempowered, and many are members of groups beset by historic and ongoing structural discrimination. The combination of working conditions and worker characteristics facilitate the spread of SARS-CoV-2, the virus that causes COVID-19. Workers have been expected to put their health and lives at risk during the pandemic because of government and industry pressures to keep this “essential industry” producing. Numerous interventions can significantly reduce the risks to workers and their communities; however, the industry’s implementation has been sporadic and inconsistent. With a focus on the U.S. context, this paper offers an ethical framework for infection prevention and control recommendations grounded in public health values of health and safety, interdependence and solidarity, and health equity and justice, with particular attention to considerations of reciprocity, equitable burden sharing, harm reduction, and health promotion. Meat-processing workers are owed an approach that protects their health relative to the risks of harms to them, their families, and their communities. Sacrifices from businesses benefitting financially from essential industry status are ethically warranted and should acknowledge the risks assumed by workers in the context of existing structural inequities.

Open Access Original Research: How Resistance Shapes Health and Well-Being

Ryan Essex

Resistance involves a range of actions such as disobedience, insubordination, misbehaviour, agitation, advocacy, subversion, and opposition. Action that occurs both publicly, privately, and day-to-day in the delivery of care, in discourse and knowledge. In this article I will demonstrate how resistance plays an important (but often overlooked) role in shaping health and well-being, for better and worse. To show how it can be largely productive and protective, I will argue that resistance intersects with health in at least two ways. First, it acts as an important counterbalance to power; undermining harmful policies, disobeying unfair instructions, challenging rights abuses, confronting those who would otherwise turn a blind eye and even holding ourselves to account when simply accepting the status quo. Second, and beyond being oppositional, resistance is a constructive, productive force, that is fundamental to imagining alternatives; new and better futures and perhaps most fundamentally resistance is cause for hope that we are not resigned to the status quo. While there are numerous examples of how resistance has been employed in service of health and well-being, resistance is not always rational or productive, it can also harm health. I will briefly explore this point. Finally, I will offer some reflections on the intersections of power and health and why this makes resistance both distinct and important when it comes to how it shapes health and well-being.

Open Access Original Research: Professional Oversight of Emergency-Use Interventions and Monitoring Systems: Ethical Guidance From the Singapore Experience of COVID-19

Tamra Lysaght, Gerald Owen Schaefer, Teck Chuan Voo, Hwee Lin Wee & Roy Joseph

High degrees of uncertainty and a lack of effective therapeutic treatments have characterized the COVID-19 pandemic and the provision of drug products outside research settings has been controversial. International guidelines for providing patients with experimental interventions to treat infectious diseases outside of clinical trials exist but it is unclear if or how they should apply in settings where clinical trials and research are strongly regulated. We propose the Professional Oversight of Emergency-Use Interventions and Monitoring System (POEIMS) as an alternative pathway based on guidance developed for the ethical provision of experimental interventions to treat COVID-19 in Singapore. We support our proposal with justifications that establish moral duties for physicians to record outcomes data and for institutions to establish monitoring systems for reporting information on safety and effectiveness to the relevant authorities. Institutions also have a duty to support generation of evidence for what constitutes good clinical practice and so should ensure the unproven intervention is made the subject of research studies that can contribute to generalizable knowledge as soon as practical and that physicians remain committed to supporting learning health systems. We outline key differences between POEIMS and other pathways for the provision of experimental interventions in public health emergencies.

Original Research: Relationship Between Emotional Intelligence and Ethical Sensitivity in Turkish Nursing Students

Emine Ergin, Arzu Koçak Uyaroğlu, Büşra Altınel

Providing effective care to patients and making the right decisions in difficult working environments depend on moral sensitivity. Emotional intelligence and ethical sensitivity affect nursing care. This study aimed to investigate the relationship between nursing students’ emotional intelligence and ethical sensitivity levels. The research employed a descriptive-correlational design, 201 nursing students studying at a university in the Central Anatolia region, Turkey, participated in the study. Students’ ethical sensitivity was found to be significant. The nursing students received the highest score in the “Interpersonal Orientation” sub-dimension of the Moral Sensitivity Scale, while their lowest score was observed in the “Experiencing ethical dilemma” sub-dimension. The SSREIT and MMSQSN total scores of the students who willingly chose the nursing department and loved their field were found to be higher. It was found that the ethical sensitivity of nursing students was at a significant level and gender, family type, having sibling(s) and perception of economic status affected the level of ethical sensitivity.

Image: komargallery