Lead Essay-Institutional Racism, Whiteness, and the Role of Critical Bioethics.

Institutional racism can be defined as differential access to power, resources, and opportunities by race that further entrenches privilege and oppression (Paradies 2016). Along with similar concepts such as systemic, structural, cultural, and societal racism, this form of racism profoundly shapes almost all aspects of our lives, including health and healthcare (Williams, Lawrence, and Davis 2019). Yet, racism more broadly and institutional racism in particular has been a neglected subject in bioethical discourse and scholarship (Danis, Wilson, and White 2016).

Bioethics has the potential to make important contributions to anti-racist programmes and strategies addressing institutional racism, yet as scholars have argued, the “whiteness” of bioethics undermines its capacity to attend to institutionalized forms of racism (Mayes 2020; Russell 2016; Danis, Wilson, and White 2016). Catherine Myser argues that bioethics depends on social and ethical theories that normalize whiteness and that “we risk repeatedly re-inscribing white privilege—white supremacy even—into the very theoretical structures and methods we create as tools to identify and manage ethical issues in biomedicine” (Myser 2003, 2). As such, whiteness not only contributes to bioethical problems such as discriminatory patient care, but it shapes the reality of what is considered an ethical problem and the way bioethicists think ethically about such problems.

To address institutional racism, and the compounding problem of whiteness, we need a bioethics that is reflexive and critical of whiteness and its relationship with institutional racism. This symposium brings together scholars and researchers from a variety of disciplines to examine how racism has been institutionalized in healthcare, how whiteness manifests in healthcare, and what bioethics can contribute towards anti-racism.

In October 2019, we invited researchers to consider the following questions:

What are the historical and material processes that contributed to the institutionalization of racism in medicine and healthcare settings?

What role can Indigenous knowledges play in de-centering whiteness and addressing racism?

Does bioethics have a role in addressing racism or is it too entangled with histories of racism and whiteness?

The articles in this issue respond to these questions and articulate the affective dimension of race in clinical spaces, the economic and social costs of racialized health inequalities, the continuing effects of colonialism and complicity of bioethics in institutional racism.

The context in which this issue came together should also be noted. By early 2020, COVID-19 was quickly emerging as a global pandemic. In May 2020, the killing of George Floyd by Minneapolis police officers re-ignited Black Lives Matter protests globally. Racism associated with the COVID-19 pandemic has impacted minority groups worldwide, exacerbating pre-existing social, economic, and health vulnerabilities within an environment of populism, rampant neo-liberal capitalism, resurgent exclusionary ethno-nationalism, and retreating internationalism (Elias et al. 2020). These events prompted medical journals to publish editorials addressing the medical consequences of racism and highlighted the entanglement of medical institutions with racism (Hardeman, Medina, and Boyd 2020; Bond et al. 2020). Bioethicists also began to reflect on whether bioethics was complicit with institutional racism and racialized health disparities, in addition to questioning the silence of bioethics on issues of racial justice and re-thinking the role of bioethics in society (Mithani, Cooper, and Boyd 2020).

Many of the authors in this symposium were actively involved in organizing and responding to the racialized impacts of COVID-19. Some were also actively engaged in Black Lives Matter protests and events. We commend the authors for researching and writing under these conditions and extend our gratitude to the anonymous peer reviewers and editorial team at the Journal of Bioethical Inquiry who worked under these conditions.

Overview of the Issue

This symposium opens with an article from Yolonda Wilson arguing for the need to broaden the role and scope of bioethics to address contemptuous racism, which she defines as “disdain for the contemned patient that cannot be overcome” (Wilson 2021, ¶6). Part of this broadening involves taking the social determinants of health seriously and recognizing the role racism plays in determining health outcomes. Wilson also argues that bioethics needs to be based on a commitment to justice that centres anti-racism.

Like Wilson’s attention to contempt, Belinda Borell critically examines the role of emotion in hospital spaces and the value placed on stoic ideals of individualism and controlled emotion. Borell argues the stoic ideal can make “hospitals emotionally unsafe spaces for Māori and other groups who place high importance in the collective sharing of emotion” (Borell 2021, “Abstract”). Borell contends that bioethicists need to contribute to anti-racist interventions that “reclaim emotion as a measure of health” (Borell 2021, “Conclusion”).

Bryan Mukandi’s paper draws on literature, art, and philosophy to reveal the function and effects of the racialized gaze in the clinical context. Mukandi outlines “a Canaanite reading” “to draw some of the lines that mark the Black person’s experience of the medical system” (Mukandi 2021, ¶5). The lines that Mukandi tangles and disentangles serve to challenge bioethical thinking and writing, as well as critically analyses medical power and the way it denotes who is seen and who can speak in clinical spaces.

A series of articles expand the focus from the clinical to the institutional, constitutional, and legislative contexts. Amanuel Elias and Yin Paradies (2021) use a multidisciplinary approach to highlight the variety of costs associated with racism at the institutional level. They demonstrate that institutional racism imposes both social and economic costs that have significant ethical implications, such as avoidable disparities in healthcare, which to-date have beeng neglected by bioethicists.

Heather Came, Maria Baker, and Tim McCreanor (2021) provide a conceptual article that explores the Matike Mai Aotearoa report on constitutional transformation in New Zealand as a novel means to address structural racism within the health system. They argue that “constitutional transformation and decolonization are potentially powerful ethical sources of disruption to whiteness and structural racism,” which can help “to eliminate entrenched health disparities” (Came, Baker, and McCreanor 2021, “Abstract”).

Thailia Anthony and Harry Blagg draw on Giorgio Agamben’s biopolitical theory to argue that settler-colonial legal and medical institutions rendered First Nations peoples as “bare life”; that is, lives “unworthy of the standard of care we owe to human beings” (Anthony and Blagg 2021, “Aboriginal Deaths in Custody: Settler Colonial Thanatopower”). These institutions operate with and produce a “regime of truth” that denigrate Indigenous peoples, knowledges, and their bodies. Anthony and Blagg argue for a decolonizing bioethics that rethinks the colonial truths about Indigenous people, which results in the health system’s discriminatory disregard for their lives.

Chelsea Bond, David Singh, and Claudette Tyson offer a powerful article that centre stories as told by Black people that “bring Black bodies into full focus and serve as testaments to the racial violence that is meted out in the absence of care” (Bond, Singh, and Tyson 2021, “Introduction” ¶5). They highlight the failure of bioethics and the assumed beneficence of Indigenous health research agendas to take Indigenous sovereignty and the experiences of black bodies more seriously. They argue that “the extent to which a radical bioethics can be put to service in the name of more just outcomes is dependent upon bringing Black bodies and lives into full view” (Bond, Singh, and Tyson 2021, “Background” ¶5).

Warwick Anderson offers an insightful set of reflections on his career as a medical anthropologist and historian. Anderson notes the way ethical regimes that govern research have shifted over time and have been shaped by a (white) bioethical judgement that has an imperative for “white universal” or global application of ethical protocols. Anderson contends that we need a more flexible understanding of ethics and argues “we should recognize others as ethical agents and authorities, not just as moral subjects. We need wide-ranging bioethical reasoning, but must it be a white mythology?” (Anderson 2021, ¶10).

In his review essay of Catherine Mills’s Biopolitics (2016) and Camisha Russell’s Assisted Reproduction of Race (2016) Christopher Mayes shows how biopolitical theory and critical philosophy of race can be useful in looking at bioethical problems from a new perspective that opens up different kinds of analyses, particularly around historically embedded problems like institutional racism and the legacies of colonialism in healthcare (Mayes 2021).

The symposium concludes with a provocation by Camisha Russell (2021) that bioethicists need to help scientists think about race. We sought responses from Mandy Truong and Mienah Sharif (2021) who argued that bioethics and public health can collectively advance scientific efforts towards addressing racism; and from Tessa Moll (2021) who recounted issues of medical mistrust and enduring racism in South Africa.

In 2016, John Hoberman argued that “[b]ioethicists have not embraced the opportunity to create a sociologically and historically informed bioethics that might be applied to the lives of [racial minorities] and their unending health crisis” (Hoberman 2016, 13). Indeed, the issue of institutional racism represents a long overdue topic of interest that requires attention within the discipline. We hope that this symposium may provide some impetus to explore the possibilities for bioethics to address institutional racism more broadly and to be more aware of, and attenuate, its influence within bioethical thinking and research. More profoundly, there is a need to engage with decolonial ways of thinking, doing, and being that de-centre and rupture the largely unexamined foundations of whiteness within bioethics.