A discussion of whiteness as an “ethos” or “relational category” in bioethics, drawing on examples from medical and historical research.

This article argues that criminal justice and health institutions under settler colonialism collude to create and sustain “truths” about First Nations lives that often render them as “bare life,” to use the term of Giorgio Agamben. First Nations peoples’ existence is stripped to its sheer biological fact of life and their humanity denied rights and dignity. First Nations people remain in a “state of exception” to the legal order and its standards of care. Zones of exception place First Nations people (...) in a separate and diminished legal order. Medical and health agencies have been instrumental in shaping colonial “biopower,” both in and beyond carceral settings to ensure that First Nations lives are managed in accordance with the colonial settler state project. This project is able both to threaten First Nations rights to live and to maintain settler self-perceptions of decency and care. We illustrate this discussion with reference to the tragic and unnecessary deaths in custody of twenty-two-year-old Yamatji woman Ms Dhu in 2014 in South Hedland Police Station, Western Australia, and twenty-six-year-old Dunghutti man David Dungay Jnr in Long Bay jail in Sydney, NSW, in 2015. Health professionals and police demonstrated callous disregard to Ms Dhu and Mr Dungay—treating them as “bare life.”. (shrink)

The rapid adoption and implementation of artificial intelligence in medicine creates an ontologically distinct situation from prior care models. There are both potential advantages and disadvantages with such technology in advancing the interests of patients, with resultant ontological and epistemic concerns for physicians and patients relating to the instatiation of AI as a dependent, semi- or fully-autonomous agent in the encounter. The concept of libertarian paternalism potentially exercised by AI has created challenges to conventional assessments of patient and physician autonomy. (...) The unclear legal relationship between AI and its users cannot be settled presently, an progress in AI and its implementation in patient care will necessitate an iterative discourse to preserve humanitarian concerns in future models of care. This paper proposes that physicians should neither uncritically accept nor unreasonably resist developments in AI but must actively engage and contribute to the discourse, since AI will affect their roles and the nature of their work. One’s moral imaginative capacity must be engaged in the questions of beneficence, autonomy, and justice of AI and whether its integration in healthcare has the potential to augment or interfere with the ends of medical practice. (shrink)

We seek to bring Black bodies and lives into full view within the enterprise of Indigenous health research to interrogate the unquestioned good that is taken to characterize contemporary Indigenous health research. We articulate a Black bioethics that is not premised upon a false logic of beneficence, rather we think through a Black bioethics premised upon an unconditional love for the Black body. We achieve this by examining the accounts of two Black mothers, fictional and factual rendering visible the racial (...) violence Black bodies have been subjected to. We call for a Black bioethics that reimagines the Black body as beautiful and belonging—to both someone and somewhere. (shrink)

This paper argues that stoicism as a central element of whiteness shapes, controls, and ultimately limits the experience and expression of emotion in public space. I explore how this may play out in particular medical settings like hospitals in Aotearoa New Zealand. I argue that working in conjunction with other values of whiteness identified by Myser —hyper-individualism, a contractual view of relationships, and an emphasis on personal control and autonomy—this makes hospitals emotionally unsafe spaces for Māori and other groups who (...) place high importance in the collective sharing of emotion. Using death and bereavement as an example, I suggest that challenging and addressing stoicism in the structure and performance of whiteness in hospital settings may provide an important point of entry for anti-racism measures and health equity. (shrink)

There are differences in caregivers’ literacy and health literacy levels that may affect their ability to consent to children participating in clinical research trials. This study aimed to explore the effectiveness, and caregivers’ understandings, of the process of informed consent that accompanied their child’s participation in a dental randomized control trial. Telephone interviews were conducted with a convenience sample of ten caregivers who each had a child participating in the RCT. Pre-tested closed and open-ended questions were used, and the findings (...) were produced from an inductive analysis of the latter and a descriptive analysis of the former. Participants had limited understanding of the purpose of the RCT and rated the readability of the consent form more highly than they rated their understanding of the research. All felt that informed consent was vital, but some caregivers had not read the consent documents. Some caregivers enrolled their child in the RCT because they trusted the researchers, and the majority wanted to improve dental care for children. The informed consent process was not always effective despite high readability of the informed consent documents. Researchers must consider the health literacy of the study group, and actively engaging with caregivers to achieve meaningful informed consent may be challenging. Future research could explore participants’ perspectives of informed consent in populations with low health literacy and assess whether an underlying expectation not to comprehend health-related information may be a barrier to informed consent. (shrink)

In colonial states and settings, constitutional arrangements are often forged within contexts that serve to maintain structural racism against Indigenous people. In 2013 the New Zealand government initiated national conversations about the constitutional arrangements in Aotearoa. Māori leadership preceded this, initiating a comprehensive engagement process among Māori in 2010, which resulted in a report by Matike Mai Aotearoa which articulated a collective Māori vision of a written constitution congruent with te Tiriti o Waitangi by 2040.This conceptual article explores the Matike (...) Mai Aotearoa report on constitutional transformation as a novel means to address structural racism within the health system as a key domain within the constitutional sphere. Matike Mai suggests alternative conceptual structural formations through its focus on the kāwanatanga, the relational and the tino rangatiratanga sphere. This framework is informed by a range of Indigenous ethical values such as tikanga, belonging, and balance that can usefully inform the redesign of the health sector.We assert that constitutional transformation and decolonization are potentially powerful ethical sources of disruption to whiteness and structural racism. We argue that, to eliminate entrenched health disparities, change processes need to be informed by the Indigenous inspirations expressed in the Matike Mai report. (shrink)

Inherent in providing healthcare for youth lie tensions among best interests, decision-making capacity, rights, and legal authority. Transgender youth experience barriers to needed gender-affirming care, often rooted in ethical and legal issues, such as healthcare provider concerns regarding youth capacity and rights to consent to hormone therapy. Even when decision-making capacity is present, youth may lack the legal authority to give consent. The aims of this paper are therefore to provide an empirical analysis of minor trans youth capacity to consent (...) to hormone therapy and to address the normative question of whether there is ethical justification for granting trans youth the authority to consent to this care. Through qualitative content analysis of interviews with trans youth, parents, and healthcare providers, we found that trans youth demonstrated the understandings and abilities characteristic of the capacity to consent to hormone therapy and that they did consent to hormone therapy with positive outcomes. Employing deontological and consequentialist reasoning and drawing on a foundation of empirical evidence, human rights, and best interests we conclude that granting trans youth with decisional capacity both the right and the legal authority to consent to hormone therapy via the informed consent model of care is ethically justified. (shrink)

This paper discusses the ethical implications of racism and some of the various costs associated with racism occurring at the institutional level. We argue that, in many ways, the laws, social structures, and institutions in Western society have operated to perpetuate the continuation of historical legacies of racial inequities with or without the intention of individuals and groups in society. By merely maintaining existing structures, laws, and social norms, society can impose social, economic, and health costs on racial minorities that (...) impinge on their well-being and human dignity. Based on a review of multidisciplinary research on racism, particularly focusing on healthcare, we demonstrate how institutional racism leads to social and economic inequalities in society. By positing institutional racism as the inherent cause of avoidable disparities in healthcare, this paper draws attention to the ethical significance of racism, which remains a relatively neglected issue in bioethics research. (shrink)

The article "Picking and Choosing Among Phase I Trials", written by Jill A. Fisher, Torin Monahan and Rebecca L. Walker, was originally published Online First without Open Access. After publication in volume 16, issue 4, page 535-549 the author decided to opt for Open Choice and to make the article an Open Access publication.

In this response paper, we respond to the criticisms that Michal Pruski raised against our article “Beyond Money: Conscientious Objection in Medicine as a Conflict of Interests.” We defend our original position against conscientious objection in healthcare by suggesting that the analogies Pruski uses to criticize our paper miss the relevant point and that some of the analogies he uses and the implications he draws are misplaced.

In a recent article for this journal, Bryan Pilkington makes a number of critical observations about one of our arguments for non-traditional medical conscientious objectors’ duty to refer. Non-traditional conscientious objectors are those professionals who object to indirectly performing actions—like, say, referring to a physician who will perform an abortion. In our response here, we discuss his central objection and clarify our position on the role of value conflicts in non-traditional conscientious objection.

Amongst other countries, the Netherlands currently allows euthanasia, provided the physician performing the procedure adheres to a strict set of requirements. In 2016, Second Chamber member Pia Dijkstra submitted a law proposal which would also allow euthanasia without the reason necessarily having any medical foundation; euthanasia on the basis of a completed life. The debate on this topic has been ongoing for over two decades, but this law proposal has made the discussion much more immediate and concrete. This paper considers (...) the moral permissibility of Pia Dijkstra’s law proposal, focusing on the ethics of the implementation Dijkstra describes in her proposal. I argue that, at present, Dijkstra’s law proposal is unsuitable for implementation, due to a number of as of yet unaddressed problems, including the possible development of an ageist stigma and undue pressure on the profession of end-of-life coordinator. Perhaps adequate responses can be conceived to address these issues. However, the existence of a radically different, yet currently equally unacceptable position regarding the implementation of euthanasia for a completed life as proposed by fellow party member Paul Schnabel suggests it may be difficult to formulate an ethically acceptable implementation for this, in principle, ethically acceptable concept. (shrink)

This review essay critically examines Catherine Mills’s Biopolitics and Camisha Russell’s The Assisted Reproduction of Race. Although distinct works, the centrality of race and reproduction provides a point of connection and an opening into reframing contemporary debates within bioethics and biopolitics. In reviewing these books together I hope to show how biopolitical theory and critical philosophy of race can be useful in looking at bioethical problems from a new perspective that open up different kinds of analyses, especially around historically embedded (...) problems like institutional racism and the legacies of colonialism in healthcare. (shrink)

This paper discusses the ethical implications of racism and some of the various costs associated with racism occurring at the institutional level. We argue that, in many ways, the laws, social structures, and institutions in Western society have operated to perpetuate the continuation of historical legacies of racial inequities with or without the intention of individuals and groups in society. By merely maintaining existing structures, laws, and social norms, society can impose social, economic, and health costs on racial minorities that (...) impinge on their well-being and human dignity. Based on a review of multidisciplinary research on racism, particularly focusing on healthcare, we demonstrate how institutional racism leads to social and economic inequalities in society. By positing institutional racism as the inherent cause of avoidable disparities in healthcare, this paper draws attention to the ethical significance of racism, which remains a relatively neglected issue in bioethics research. (shrink)

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.

The following pages sketch the outlines of “a Canaanite reading” of the health system. Beginning with the Black person—African, Afro-diasporic, Aboriginal, and Torres Strait Islander—who is seen by a health professional, the functions and effects of the racializing gaze are examined. I wrestle with Al Saji’s understanding of “colonial disregard,” Whittaker’s insights into the extractive disposition of settler institutions vis-à-vis Indigenous peoples, and Saidiya Hartman and Fred Moten’s struggle with the spectacular. This leads me to conclude that the situation of (...) the Black within the health system is a tragic one. The prescription for the path out of this tragedy that I settle on, responding to Okiji’s opening call, is found in Vernon Ah Kee’s “Unwritten” series. (shrink)

Goldberg notes that the relationship is a component of Conflicts of Interests. Networks of relationships and the simultaneous presence of several interests are not negative per se but become so when they generate a conflict that undermines impartiality. The solution to the problem of COIs, therefore, cannot be to abolish relationships and the interests that they necessarily express but rather to verify whether those relationships are such as to unduly affect an individual’s judgement. The evolution of an Italian legislation about (...) COIs is eloquent in this regard. (shrink)

Giubilini and Savulescu in their recent Journal of Bioethical Inquiry symposium article presented an account of conscientious objection that argues for its recognition as a non-financial conflict of interest. In this short commentary, I highlight some problems with their account. First, I discuss their solicitor analogy. Second, I discuss some problems surrounding their objectivity claim about standards of medical care. Next, I discuss some issues arising from consistently applying their approach. Finally, I highlight that conscientious objection should be viewed not (...) as a conflict of interest but as something that society has an interest in preserving. I conclude by arguing that clinicians who have a conscientious objection can be treated in the same way as those who decide to subspecialize and do not need to give up work in their specialty. While Giubilini and Savulescu present an interesting argument about conscientious objection, theirs is not a compelling view. Indeed, the way we approach conscientious objection has more to teach us about conflicts of interest than the other way around. (shrink)

In this essay, I argue that bioethicists have a thus-far unfulfilled role to play in helping life scientists, including medical doctors and researchers, think about race. I begin with descriptions of how life scientists tend to think about race and descriptions of typical approaches to bioethics. I then describe three different approaches to race: biological race, race as social construction, and race as cultural driver of history. Taking into account the historical and contemporary interplay of these three approaches, I suggest (...) an alternative framework for thinking about race focused on how the idea of race functions socially. Finally, using assisted reproductive technologies as an example, I discuss how bioethicists and scientists might work together using this framework to improve not only their own but broader perspectives on race. (shrink)

Racism is a key driver of the social, political, and economic injustices that cause and maintain health inequities. Over centuries and across continents, racism has become deeply ingrained within societies. Therefore, we believe that it is our professional and ethical obligation as scientists, and public health scholars specifically, to address racism head on in order to ameliorate racialized health disparities. We argue that greater focus is needed on addressing racism rather than race and how race is described or defined. We (...) offer input from public health scholarship to help bioethicists and other scientists contribute to addressing racism. To do so effectively and comprehensively, public health scholars, bioethicists, and other scientists should work together to identify and implement equity-driven collaborations to eliminate the deleterious effects of racism on individuals, families, and communities. (shrink)

The U.S. healthcare system has a long history of displaying racist contempt toward Black people. From medical schools’ use of enslaved bodies as cadavers to the widespread hospital practice of reporting suspected drug users who seek medical help to the police, the institutional practices and policies that have shaped U.S. healthcare systems as we know them cannot be minimized as coincidence. Rather, the very foundations of medical discovery, diagnosis, and treatment are built on racist contempt for Black people and have (...) become self-perpetuating. Yet, I argue that bioethics and bioethicists have a role in combatting racism. However, in order to do so, bioethicists have to understand the workings of contemptuous racism and how that particular form of racism manifests in U.S. healthcare institutions. Insofar as justice is part of the core mission of bioethics, then antiracism must also be part of the mission of bioethics. (shrink)