Racism in healthcare and bioethics

Race, as a ‘technology for the management of human difference’1 has profound repercussions for the health and flourishing of human beings across the world. Discrimination based on race occurs in our interpersonal relationships and institutions and influences people's access to fair health outcomes. This has once again become severely apparent in the pandemic. COVID-19 has created and reinforced health disparities that disproportionately harmed Black, Latinx, Indigenous, Asian, and other minoritized communities, and exposed stark failures of solidarity with Global South populations. As very public violations of the humanity of Black people led to an upsurge in support for the Black Lives Matter movement, and hate crimes committed against Asian American and Pacific Islander people rose to alarming levels, we asked ourselves: What is the place of bioethics in conversations about structural and interpersonal racism? As scholars and practitioners of anti-racist bioethics, we determined that it was once again a crucial moment for the bioethics community to review our engagement with race and racism in healthcare. There is ample evidence that race and racism are key determinants of health, that in turn reinforce patterns of social and economic inequality. The fact that race is a socially constructed ascription makes its experience no less of a reality for those who are systematically racialized, either globally or within dominant white populations. Determinants associated with race and racism are historical, institutional, commercial and political. They include (but are not limited to) police brutality, discrimination within the criminal justice system, medical care, housing and education systems that have perpetuated and reinforced colonial and racialized social disadvantage. Racial inequality and bias exist in every institution and system that governs our social lives, and therefore also affect our ability to enjoy health and well-being. Accordingly, the confluence of race, racism, and health must be an urgent priority for bioethics as a profession concerned with justice through the life course. This Special Issue brings together researchers in medical ethics, public health ethics, research ethics, and global health ethics who are engaging in and extending the academic, legal, policy, and public discourse on racism in bioethics and health. The authors included in this Special Issue were encouraged to engage with conceptual, applied and empirical work related to race and racism, and associated areas of whiteness and white privilege, coloniality, complicity in perpetuating oppression, or allyship in changing structures of injustice. It was extremely encouraging to witness the enthusiasm with which this call was received, and the many excellent contributions submitted. Our decision to ask Bioethics to host this issue stemmed from the guest editors’ belief that racism has been side-lined not only in healthcare, but also in our theorizing about health and well-being and bioethics’ place in these discussions. This issue is therefore concerned not only with identifying and tackling specific instances of racism and coloniality in healthcare, but with the ways in which bioethicists, and the philosophical methodologies we draw upon, tend to be insufficiently attentive to the central role race and racism play in determining our differential relationships to care, neglect, and exploitation. The papers in the first half of the issue take up this task, posing and addressing key conceptual questions and offering insights that will be valuable within bioethics and philosophy more generally. While mainstream understandings of racism have in recent years taken a ‘structural turn’ that promises a more radical critique of a system founded on racism, there has been insufficient attention to the task of defining what we mean by ‘structural’, how it relates to and differs from ‘institutional’ racism, and the place of interpersonal racism within the resulting schema. Agomoni Ganguli-Mitra and colleagues use three case studies from the COVID-19 pandemic to carefully tease apart and define structural, interpersonal, and institutional racism, and to show how, in a system of racial capitalism, they collude to limit the health possibilities of racialized people. Travis Rieder and Nabina Liebow also focus their attention on the complex interplay between the individual and the structural. Racial health disparities are, like climate change, a collective action problem. Yet, as Rieder and Liebow argue, this does not mean that individual action is unimportant; rather, it is an essential ingredient of the former. While structural changes must be made, individual transformation is also necessary, and white people have a particular duty to examine and modify their individual behaviours. Like Ganguli-Mitra et al. and Rieder and Liebow, Brian Hutler seeks to understand how racism brings about health disparities. Hutler shows that while causal accounts are important, health equity can be seen as a freestanding moral demand and an essential element of reparative justice, among other possible framings. Reparative justice is the central theme of Audrey Chapman's contribution. Against the backdrop of the differential harms of COVID-19, Chapman explores reparations as a route to addressing the injustices of structural racism. She reviews a raft of existing proposals for enacting reparations before making the case for collective reparations led by governments. Vaccination drives within the COVID-19 pandemic have been scuppered by significant levels of vaccine hesitancy, particularly among groups that have been and continue to be mistreated and exploited by the medical establishment. Alyssa Newman interrogates the idea of ‘medical mistrust’, arguing that we should resist vilifying individuals from marginalized groups and reframe our discussions to centre on the trustworthiness of institutions. Yolonda Wilson undertakes a similarly incisive critique of the role of empathy in healthcare. While it is often taken to be a self-evidently positive feature of moral deliberation, in practice, empathy in a context of structural racism tends to entrench biases against marginalized groups, who are less likely to feature in the moral imaginings of powerful, white decision-makers. Similar biases are found elsewhere. Dominant heuristics for rationing scarce health resources usually rely on life-maximizing utilitarian principles that deprioritize those whose health is systematically limited by structural racism. Luís Cordeiro-Rodrigues and Cornelius Ewuoso offer a relational approach to rationing, based on communitarian principles from African philosophy. The second half of papers in this Special Issue take the concepts of harm, race, interpersonal, and structural racism, and other related concepts and apply them to specific instances of violations of health, agency, and individuals’ humanity. For instance, Hilary Aked examines the ethical issues, racial politics, and the use of mental healthcare professionals in the UK's counter-radicalization programme ‘Prevent’. Also focusing on the ethical implications of technology, Tereza Hendl and Tiara Roxanne examine the effects of digital tracing systems used to mitigate the spread of infectious diseases like COVID-19 on Indigenous peoples. Using Indigenous perspectives, Hendl examines whether digital technologies could protect Indigenous people's health during a pandemic. The papers by Emily Berkman et al. and Katherine MacDuffie et al. address institutional racism and its threat to health equity and individuals’ well-being. Berkman and colleagues explore the concepts of harm and anti-Black racism in the US Child Welfare system. Using a case study, they explore how mandatory healthcare reporters can contribute to anti-Black racism in Child Protective Services. To address racism's threat to health equity, MacDuffie and colleagues situate their novel approach to addressing health equity in clinical ethics consultations within the context of challenges faced by traditional clinical ethics consultation. Both Berkman and MacDuffie and colleagues offer recommendations for healthcare providers that address racial biases and institutional barriers. Eric Smaw also addresses how institutional racism led to African American, Native American, and Hispanic American women being sterilized by American public health agencies. Smaw concludes that women from these racial groups who were forcibly sterilized are owed reparations by the United States Congress and the healthcare workers involved should face criminal charges. Like Berkman and MacDuffie and colleagues, Smaw also offers a way going forward, including the American medical community reconciling with Black and Brown communities. Tiia Sudenkaarne and Mwenza Blell, along with Desiree Valentine encourage us to employ a new lens to our evaluation of specific instances of healthcare and healthcare policy. For example, Sudenkaarne and Blell use a bioethical lens, specifically a Black and queer perspective, to evaluate the Nordic welfare state and its aim to offer universal healthcare and achieve good health. Valentine advocates for a conceptual lens that considers the historical, political, and conceptual intertwinement of racism and ableism. Valentine proposes the concept ‘racialized disablement’ to aid our understanding of structural oppression that contribute to racial disparities in health. Together, the papers in this Special Issue contribute to a growing movement examining the relevance of race and racism in bioethics, but much anti-racist and anti-colonial work lies ahead. This issue draws together contemporary critical analysis of racism and health and also serves as a call for bioethicists and other scholars to continue the necessary work to secure equitable health outcomes for marginalized groups and for bioethics to de-centre the dominance of majority perspectives. It is our hope that this Special Issue will prompt further conversations within the bioethical community and beyond, as well as inspire future contributions to scholarship that are informed by deep reflection and interdisciplinary dialogue

Bioethics · Health care · Political science · Racism · Sociology · Ethics in medical practice · Gender Studies · Health and Conflict Studies · Law · Public Health Policies and Education

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