Black Bioethics in the Age of Black Lives Matter

Introduction

Keisha Ray, PhD

For many people, the #BlackLivesMatter protests that occurred over the past 10 years were their first introduction to anti-Black racism and racially motivated violence. The protests showed them an aspect of Black life that they did not know existed. Similarly, the COVID-19 pandemic introduced many people to systemic racial inequities in healthcare due to poor access to vital resources like access to transportation, healthy foods, and clean air. For scholars whose work has always been at the intersection of anti-Black racism, health, and the social and political determinants of health, none of this was new. We always knew that Black people were often the targets of interpersonal and state-sanctioned violence. Racial disparities in healthcare and social resources that leave Black people with some of the overall worst health outcomes were also not new.

When #BlackLivesMatter protests and the racial disparities of the COVID-19 pandemic converged, however, bioethicists were presented with an opportunity to share their expertise. In particular, bioethicists with expertise in health justice for Black people were presented with a chance to bring the ideals of Black Bioethics to the ways we think about and research Black health and the ways we engage our communities. Black Bioethics has much to offer in this critical moment in time. In particular, Black Bioethics can help reshape how bioethicists apply basic principles like justice and autonomy to healthcare and how we think of our own individual health and the health of our marginalized communities. Black Bioethics offers us a chance to rethink how Black people’s social and political lives affect our sense of health and well-being.

Perhaps the most important offering Black Bioethics has to give this movement is putting Black people and our lived experiences at the forefront of our scholarship on Black health. Too often, experiences are dismissed and forgotten, as they are deemed epistemologically unsound and of no research value. Making use of testimonies, biographies, stories, and other forms of narratives, however, elevates Black people as trustworthy narrators of their own stories. In contrast to the one-dimensional portrayals we are often given, narratives allow Black people to be accurately portrayed as intersectional, complex, and fully human—experiencing all the joys and pitfalls of life.

This is the context of our collection of essays. Our essays on intersectionality and Black identities, storytelling, rebellion, carcerality and anti-Black racism, justice, and joy are a part of the bigger project of Black Bioethics. We aim to help bioethics refocus and remember its own rebellious roots that once called to empower all people, particularly those that are the least well-off among us, and call on the field to advocate for systems that work for all people and their health goals. Our collection of essays shows that the fight we see in #BlackLivesMatter and the resilience we saw in Black communities during the COVID-19 pandemic are lessons that bioethics cannot afford to ignore and must adopt to remain relevant in a politically and socially changing world.

Black Bioethics and our humanity: learning from storytelling in #BlackLivesMatter

Keisha Ray, PhD

When my research into Black health or the study of Black people’s health began, I noticed that our poor health was mostly reported in statistics and other types of data points. Because Black people have poor health outcomes in many different areas, our health became just a long list of numbers. But the numbers did not tell me how our poor health affected how we lived our lives, with whom we lived, or how much we enjoyed our lives; the numbers did not tell me how poor health affected the parts of our lives that make us uniquely human. In my teaching, I also found that students had a hard time connecting to statistics. They could recite the numbers associated with Black health but could not translate those numbers into how they should care for Black patients as people with rich lives.

While trying to capture the connective nature of stories but also navigate the ways they are often used against Black people, I took my experiences with research, pedagogy, and stories as essential to the way that I practice Black Bioethics or a way of engaging in bioethics that centers the experiences of Black people and the events, technology, and practices that jeopardize their access to equitable health (Ray 2021c). Although stories are a mainstay in medical humanities, they are not as prevalent in bioethics scholarship. Stories, however, have the potential to make bioethics and new subfields like Black Bioethics more relatable and influential to the general public. Most importantly, stories have the potential to aid Black Bioethics in the sorely needed project of humanizing Black people in ways data sets simply cannot do alone. They offer a depth to research on Black health that I have not seen in any other research tool. The very need for stories to humanize Black people is unfortunate; however, some people do not have access to the lived experience of being Black in a world that demonstrates anti-Blackness in almost every part of everyday life. This makes it harder for some people to understand how living as a Black person who frequently encounters racism contributes to racial disparities in health. Stories about Black people’s health and their experiences in the world, however, demonstrate their fragile and often violent relationship with systems and institutions (Ray 2021a). But the storyteller also matters. Who tells the story is just as important as the story itself. Marginalized people and their communities are especially vulnerable to stories being used against their own interests because they are often removed from the storytelling role and reduced to statistical information in research.

During the #BlackLivesMatter protests of injustices committed against Black people over the past decade or so, we have seen the power of stories and the importance of who is telling the story. We have seen Black victims of police violence, like George Floyd, or victims of racist attacks, like Trayvon Martin, be subjected to dueling stories, painting Black victims either as immoral actors whose actions brought upon their own death or as victims of interpersonal and institutional racism whose fate was decided by immoral actors. The nature of dueling stories that were seen during #BlackLivesMatter’s major protests offers a lesson on how stories can influence how we think of racism’s effects on Black people’s health—namely, that 1) stories can grant or deprive Black people of their humanity, and 2) social justice requires centering Black people’s stories.

Opposing stories of humanity

In 2013, a White man who killed Black teenager Trayvon Martin while he walked through his Florida neighborhood was legally acquitted of murder and all other charges. In response to what many saw as a grave injustice to Martin, his family, and all Black people, the organization #BlackLivesMatter (BLM) was formed to protest this injustice (Black Lives Matter n.d.). With the rise of BLM also came the rise of critics who argued that “all lives matter” or that Black victims of murder, like Trayvon, brought violence and death upon themselves by acting in illegal or suspicious ways. The rise of BLM also saw a growth in counter-narratives largely driven by cable news networks and extensive social media usage (Madison 2015). While the general narrative was that Martin was walking home when accosted by a man who appointed himself as neighborhood security, the counternarrative that Martin attacked his killer first or that Martin was a known drug user who engaged in illicit behavior was also a part of the national and international discussion. While Martin’s parents openly wept on television for the loving and charismatic son that they lost, other stories emerged to counter this softer, human image of Martin. In fact, a simple online search of pictures of Martin will return a smiling graduation photo of him but also photos of him smoking or holding a handgun. The smoking or handgun photos were strategically used by people, primarily White people, to push the counternarrative that Martin was a thug who brought upon his own death or a bad actor who acted as the aggressor and deserved to die for it.

Similar to Martin, the more recent murder of George Floyd in 2020 and the subsequent worldwide BLM protests were also rife with dueling stories. Despite there being a video of Floyd’s killing, in addition to the narrative that the police officer who killed him used excessive force, there was the story that Floyd put himself in a position to be killed. Floyd was a large man, so the idea that his weight contributed to his death also permeated discussions of his murder. Additionally, accusations of criminal behavior prior to his murder were also used to justify both his death and the police officer’s supposedly peacekeeping action of kneeling on Floyd’s neck. These stories about Floyd were used to deny his right to life. These stories were meant to blame Floyd for his own murder and, like Martin, support the idea that, if George were a more moral person, he would still be alive today. Like Martin, these counternarratives were used to take the steam out of BLM protests and to take power away from their growing platform and public influence. BLM changed how we tell Black people’s stories, and some people do not like the implication this has for how we see Black people’s humanity.

Similar to the themes of blame, immoral behavior, and bad character in the Martin and Floyd stories, we also see these same themes in stories about why Black people have bad health, who is responsible for their poor health, and who should be held accountable. A counternarrative I often encounter in my Black Bioethics work is that Black people have poor health because they choose to eat unhealthy foods, are inactive, and forgo routine healthcare because they are lazy or do not care about their health. This false and racist narrative ignores a large part of Black people’s health story, namely the story of how institutions and inequitable access to the social determinants of health contribute to Black people’s poor health. If we are going to laud the power of stories and use them as research tools, then we have to tell the whole story.

For instance, we cannot tell the story of Black people’s health without including environmental racism. It is environmental racism—that is, disproportionately building, maintaining, and poorly regulating the facilities that emit toxins in neighborhoods predominantly populated with Black (Latin and Indigenous) families—that contributes to higher rates of asthma among Black people, specifically Black children, not Black people’s unwillingness to go to the doctor (Ray 2021b). But if the dominant story is that Black people are sick because of their own moral failings and not the failings of the institutions around them, then institutions like environmental health agencies and corporations who own and operate cancer-causing, toxin-emitting facilities do not have to be held responsible for the damage they cause to Black people’s health. Furthermore, if institutions are not held responsible for the ways they make Black people sick, then they do not have to change; they do not have to treat Black people as people who matter and ought not to be harmed. Knowing the whole story of Black health and being able to decipher when stories are used to deny Black people’s humanity are central to Black Bioethics’ demands of health justice for Black people. We cannot expect to change Black people’s health outcomes if we cannot control the narrative of how we came to have bad health.

Lessons Black Bioethics can take from BLM

BLM showed that telling Black people’s stories or giving them a space to tell their own stories is viewed as an inherently political act simply because Black people’s existence is viewed as political. At the same time, it taught us that we absolutely must take on this task because, if we do not tell our stories, other people will tell them for us and use our stories to deny us our rightful moral status and all the rights it entitles us.

BLM let Black people’s stories fuel its social justice initiatives. It used stories to put Black people at the forefront of protests and social inclusion efforts to show the extent to which Black people had been excluded from our collective social consciousness. Stories allowed us to see the total impact of anti-Black racism and the ways it infiltrates all parts of Black life. And for those who were far removed from the experience of being Black, BLM used stories to make us care about racial injustice and be so moved that we were unable to turn our backs on Black people’s suffering. In this way, stories are an act of rebellion, a way to force people to reckon with BLM’s demands that Black people ought to be treated like the full and complex human beings we are.

Black Bioethics is also a rebellion. It is a rebellion against the status quo in bioethics—a rebellion against Black people’s lives being an afterthought, particularly in issues of justice. Stories aid in this rebellion. Just as stories helped BLM show the full range of Black people’s humanity and the ways that individuals and institutions deny Black people that humanity, stories help Black Bioethics demonstrate just how our institutions contribute to Black people’s poor health and prevent them from living full lives. In Black Bioethics, stories can create the same emotional stirring that they did for BLM supporters since they share many of the same challenges and goals. And just as it would be imprudent to underestimate the role of stories in social justice, it would be imprudent of us to underestimate what stories can do for our sense of health justice for Black people.

Conclusion

The battle for whose story would become the dominant story of Black victims of racial violence during #BlackLivesMatter protests proves that stories are powerful and can be used for moral or immoral purposes. Yet, victory only comes when people are allowed to use stories to tell their own truth. This is what Black Bioethics tries to adopt from BLM and the medical humanities. Black Bioethics uses responsible storytelling to show the lived experience of being Black and how our racial identity intersects with institutions to create poor health outcomes. Whereas statistical information informs us at a population level, stories tell us about the individual experience. Stories tell us what it means for Black people’s health, livelihoods, and access to joy and happiness to be affected by institutions that would prefer we keep our stories quiet and ignore their starring role.

Our healthcare stories matter: using narratives to engage future health professionals and foster health equity

Faith E. Fletcher, PhD, MA

Stories matter. Many stories matter. Stories have been used to dispossess and to malign. But stories can also be used to empower and to humanize. Stories can break the dignity of a people. But stories can also repair that broken dignity.

—Chimamanda Ngozi Adichie, “The Danger of a Single Story,” 2009.

One of my early encounters with the healthcare system as a pre-adolescent left me feeling ashamed, demoralized, and self-conscious. When the provider (a White male) initiated my physical examination, he fully lifted my medical gown without warning and embarrassed me. Still making sense of my rapid physical development, I was deeply troubled by that interaction. Following the exam, my mother vividly recounts that I expressed to her, void of any context, “I don’t like that doctor.” A medical professional and science educator herself, she immediately discontinued care with that provider. As a result of that dissatisfying healthcare experience, we later engaged a local family doctor known for his patient-centered care and unmatched bedside manner. Notably, the first Black doctor that I encountered, set the standard for how I should be treated in all healthcare interactions—with respect, care, and dignity. In fact, after my interactions with this structurally competent provider, I was then able to communicate to my mom exactly what troubled me about the interaction with the previous provider. Motivated by increasing national calls to address structural racism as a threat to the public’s health, I was recently asked by a health reporter to comment on how my own healthcare experiences inform my current work in bioethics (Laderer and Caplan 2022). While she was the first reporter to ask about my lived experiences in the context of healthcare, I immediately knew which experience I wanted to bring to the fore. Like many medical patients, I was grateful for the opportunity to discuss my loss of dignity as a young Black woman seeking healthcare. Through the power of storytelling, I was both empowered and humanized.

Early in my career as a public health faculty member, I was tasked with teaching Social and Behavioral Theory to students in the Master of Public Health program. In the beginning, I assigned widely used readings and delivered lectures that ultimately aimed to help students critically examine major models and theories of health behavior change (Rimer and Glanz 2005). Most of the recognized and referenced theorists in standard texts are White males. Thus, I was deeply committed to curating content relevant to health behavior and equity and introducing students to diverse perspectives using multiple strategies (e.g., articles, expert guest lecturers, and multimedia presentations). Importantly, I assigned readings authored by scholars of color, particularly Black women scholars, who are severely under-cited in teaching and scholarly discourse (Cite Black Women n.d.). As an instructor, I did not feel that I was offered the same level of respect as my colleagues. I was forced to grapple with the harsh reality that my own intersecting identities as a relatively young Black woman from the Deep South somehow made me feel inferior as a professor. Based on my experiences as a qualitative researcher, I knew it was important to employ a reflexive teaching approach to evaluate how my own biases, beliefs, communication (both non-verbal and verbal), and identities might influence the classroom dynamic and learning process. After several years of teaching, I realized that the key to fostering trust and building rapport with student learners was to deliberately center my intersecting identities and my own healthcare experiences through transparency and vulnerability. I achieved this by embracing the roles of both the storyteller and story-listener.

The danger of a single story

I incorporated the well-circulated TED Talk “The Danger of a Single Story” by novelist Chimamanda Ngozi Adichie into my theory course. I was struck by Adichie’s brilliant analysis and related questions around single stories and power structures, particularly those questions that challenge us to interrogate who tells the stories; how the stories are told; when they are told; and how many stories are told. As a Black woman scholar working at the intersections of public health and bioethics, these questions have salience for understanding health inequities and the power structures that create and maintain disparate health outcomes (Best 2022). Importantly, these questions are well aligned with existing national debates and efforts intended to challenge teachings and dominant narratives that fail to acknowledge the embeddedness of structural racism in US policies, practices, healthcare, and educational systems. While Adichie never explicitly mentions health in her talk, her message has clear relevance for health and health outcomes. Some powerful examples of dangerous single narratives that were cited by students in my course included “Dark skin isn’t beautiful” and “Poor people are lazy and obese.”

Evidence suggests that these societal-embedded stereotypes can manifest in healthcare interactions by way of stigma, bias, and discrimination and are especially harmful to patient care and outcomes (Rice et al. 2019). The internalization of these and other stereotypes can lead to a loss of self-worth and shame, ultimately undermining healthcare-seeking behavior and engagement. Reflecting on my early days of teaching, I finally learned to confidently center my own experiences and narratives as a Black woman navigating various societal contexts and spaces from different vantage points, including healthcare settings. Aligned with a social justice framework, in my current teaching, I work to create safe spaces for learners to reject existing malignant narratives and counter them with those that empower and restore dignity. I also remind students that their lived experiences matter.

Missing stories

Through a deliberate focus on centering the insights and voices of scholars of color in my method of teaching, I was inspired by the prolific work and began to examine more deeply whose stories are prioritized; whose stories are being told with accuracy; whose stories are being excluded and made invisible; whose stories are easily accessible; and who feels safe enough to share and document their stories. As noted by Adichie, we must seek diverse perspectives—and in turn, as writers, we must tell our own stories. The Cite Black Women movement underscores the systemic exclusion of Black women’s ideas, contributions, and stories in academia and mainstream literature (Cite Black Women n.d.). This problem is pervasive across all of academia, but arguably, fields such as bioethics with founding roots in justice have a heightened ethical obligation to appropriately center the work of scholars of color prioritizing health and racial justice issues (Fletcher et al. 2022). Many of us are working collectively to address these critical shortcomings by centering and integrating the perspectives, voices, and realities of scholars of color to expand the bioethics canon. Aligned with this effort, The Hastings Center Report’s March/April 2022 Supplement, titled “A Critical Moment in Bioethics: Reckoning with Anti-Blackness through Intergenerational Dialogue” (“About the Special Report” 2022), highlights the past and present work of mostly Black scholars and women and envisions and frames a braver, broader, and more just bioethics for the future. Some of the original bioethics scholars labored for decades, laying the groundwork for a new generation of scholars to carry forth the intergenerational bioethics work in love, community, and dialogue with our elders. Our stories matter for health and humanity.

Implications for health professional education

In my teaching and research praxis, I use narratives to help contextualize social determinants of health inequity, such as racism. The recent release of Advancing Health Equity: A Guide to Language, Narrative and Concepts, by the American Medical Association (AMA) and the Association of American Medical Colleges (AAMC), offers a comprehensive framework for ethically centering the lived experiences of patients in healthcare interactions and communication (AMA and AAMC 2021). As a relatively new faculty member in the Center for Medical Ethics and Health Policy at Baylor College of Medicine, I introduce this framework to future healthcare providers to increase their awareness of how language and communication can affect a patient’s mental and physical health. I begin framing the issue by drawing on a Rolling Stone article by Dr. Elizabeth Yuko titled “Why Are Black Communities Being Singled Out as Vaccine Hesitant?” (Yuko 2021). Along with other colleagues, we argued in this feature that positioning vaccine distrust as a problem specific to African Americans is not only inaccurate and unjust—it is also harmful. Early in the pandemic, much of the rhetoric focused on Black communities’ distrust of medical providers and their vaccine-hesitant attitudes and behaviors. As noted by the AMA and the AAMC (2021, 24), a health equity-based narrative “avoid[s] both blaming individuals for their condition or assuming that inequity can be resolved through programmatic fixes that ignore the social responsibility of corporations and government agencies.” Thus, we must equip future health professionals with the knowledge, skills, and moral courage to challenge dangerous stories and stereotypes and to disrupt long-standing oppressive practices in medicine.

I recently asked a group of medical students, “Why do equity-based narratives matter for health?” One student responded that characterizing or documenting in medical notes that a patient is aggressive, for example, will likely undercut future interactions that this patient has with other providers. If we are serious about addressing healthcare system inequities, we must dismantle those harmful narratives, frameworks, and practices that contribute to the delivery of substandard care to minoritized patients. Black-centered narratives in healthcare can be used as a tool to engage future health professionals to foster health equity. Further, a chief focus on anti-Black racism in healthcare and the structural and social determinants of health inequities will help to advance the Black Lives Matter movement’s agenda. Our healthcare stories matter.

Towards an intersectional bioethics: learning from social activist movements like Black Lives Matter

Daphne O. Martschenko, PhD

Introduction

Justice entails giving each person their due and ensuring that goods are fairly distributed in society through a transparent and reasonable process (Daniels 2001). In the United States, there is ample evidence that injustice is a pervasive feature of society. Higher education is deeply stratified: low-income students are concentrated in community colleges, while high-income students are pooled in highly selective colleges (Bastedo and Jaquette 2011). Quality healthcare is inaccessible for far too many: African Americans are more likely to live in “trauma deserts,” farther away from critical, life-saving care (Tung et al. 2019, 1). The COVID-19 pandemic is exacerbating gender inequality in the workforce; thus far in the pandemic, women have experienced greater job loss and reduced labor income than men (Dang and Viet Nguyen 2021).

The murder of 17-year-old Trayvon Martin in 2012 led to a national outcry and heightened public awareness of racial injustice in the United States. Then, almost a decade later, in 2020, the murder of 46-year-old George Floyd reinvigorated calls to acknowledge and counteract the effects of White supremacy on Black communities. Social movements like Black Lives Matter have been critical in exposing the widespread durability of racial injustice in society. Founded in 2013 by Alicia Garza, Patrisse Cullors, and Opal Tometi, BLM is a grassroots collective committed to fighting and counteracting violence against Black communities while celebrating Black innovation, creativity, and joy (Black Lives Matter n.d.). At the heart of BLM’s mission is understanding how inequality and injustice operate along multiple dimensions.

Social activist movements such as BLM have long understood the complex, multi-faceted nature of discrimination and oppression. In comparison, however, academic scholarship largely continues with single-axis analyses—that is, empirical academic scholarship predominantly treats race, (dis)ability, gender, class, and other demographic characteristics as if each were a monolith. Further, these demographic characteristics are frequently studied in isolation from one another. Single-axis analyses ignore the complexity within and among people and communities; they are insufficient for grappling with the breadth of injustice in science and society.

Obtaining justice and documenting injustice are crucial features of bioethics scholarship. In service of these aims, Black-identifying scholars have spearheaded research on anti-Black racism in biomedicine and clinical care (“About the Special Report” 2022). Yet, the field as a whole has shown minimal commitment to taking seriously and wrestling with such topics (Ray 2021c). As such, I join others in calling for a more intersectional bioethics (Grzanka et al. 2016). I argue that intersectional approaches offer bioethics a precious opportunity to understand more deeply and work towards addressing barriers to human flourishing and justice. In this piece, I illustrate how bioethics can learn from activist movements such as BLM as it works towards an intersectional approach to identifying and rectifying injustice.

Intersectionality

Intersectionality is an analytic tool that considers how social characteristics and assigned definitions inform concepts of social inequality, relationality, and power (Collins and Bilge 2016). It serves to unearth vulnerabilities and exclusions (Davis 2008) while empowering those who have historically been relegated to society’s peripheries. Intersectionality understands that there exists an intricate web of discrimination and disadvantage that shapes the everyday lives and experiences of individuals. With this understanding, it challenges a status quo that attempts to operate in dichotomies—Black or White, male or female, able or disabled, rich or poor, citizen or non-citizen. Simply put, categories of race, class, gender, sexuality, age, disability, ethnicity, nation, and religion “constitute interlocking, mutually constructing or intersecting systems of power” (Collins and Bilge 2016, 27).

The message of the BLM movement—that White supremacy has an adverse, violent, and systemic impact on Black communities—is not new. Social movements such as the Civil Rights and Black Power movements of the 1960s and 1970s were similarly motivated to have it known that Black lives matter. These movements fought for racial justice while simultaneously pointing out the different ways in which racial injustice can be experienced and delivered. It was in these historical moments of social upheaval that intersectionality found its roots (Collins and Bilge 2016).

Scholars often credit the Black feminist legal scholar Kimberlé Crenshaw with developing intersectionality—citing her Stanford Law Review article “Mapping the Margins: Intersectionality, Identity Politics, and Violence Against Women of Color” (Crenshaw 1991). While Crenshaw may have introduced the term into the academic lexicon, intersectional approaches were fleshed out by women of color during a number of social movements, among them the Civil Rights, Black Power, Chicano liberation, Red Power, and Asian American movements (Collins and Bilge 2016, 65). Using their epistemic privilege and embodied knowledge, feminist activists of color used intersectionality to draw attention to the ways in which gender, racial, and class domination intersected to differentially affect women of color (Roth 2004). In doing so, they challenged singular interpretations of events that were affording privileges to some and not to others. Critically, intersectionality was born out of social action rather than sterilized academic circles of critical inquiry. Through engagement in social praxis, intersectionality has and continues to serve as a boundary-pushing tool of resistance—radically changing the ways in which individuals understand disadvantage and inequality.

Toward an intersectional bioethics

Bioethics is well-positioned to foster antiracism in scholarship, training, and advocacy (Danis et al. 2016). Although the field focuses on ethical issues in biomedical research and clinical care specifically, Danis et al. (2016) point out that many ethical dilemmas that impact health and well-being lie outside of healthcare settings. For instance, there are significant ethical dilemmas posed by the social determinants of health and complex disease. Social factors such as poverty, unequal access to healthcare, lack of education, stigma, and racism are underlying and contributing factors to health inequalities. These inequalities, in turn, generate the ethical dilemmas that bioethics grapples with (Danis et al. 2016). If the field genuinely values the just conduct of biomedical research and the just provision of clinical care, then it will need to draw upon intersectionality to understand and effectively analyze the many interlocking complexities in our world and in human experiences. Social activist movements like BLM and their use of intersectionality offer several lessons to those in the field working to secure justice in biomedicine, clinical care, and society.

First, as an analytic tool, intersectionality recognizes and understands that different social forces conjoin to produce and maintain privilege and marginalization. Therefore, intersectionality clarifies instances in which real lives and experiences are being erased. Bioethics cannot afford to “neglect entire ways of being in the world,” though it has and continues to do so (Wallace 2022, S79). Social activist movements like BLM are drawing attention to ways of being that are unjust yet largely ignored by mainstream hegemonic interests. For instance, BLM directly acknowledges within its movement “those who have been marginalized within [other] Black liberation movements” (Black Lives Matter n.d.). Using intersectionality, BLM heightens awareness of the ways in which Black queer and trans individuals, undocumented individuals, and people with disabilities have different experiences with White supremacy and advance colonialism. In doing so, it centers rather than erases real lives and experiences. Learning from this movement, bioethical scholarship grounded in the principle of justice will need to find ways to center the experiences of Black-identifying individuals without treating the Black community as a homogenous entity.

Additionally, failing to adopt an intersectional approach to bioethics studies of racial discrimination and oppression will make identifying potential solutions more difficult. By celebrating the heterogeneity within the Black community, movements like BLM foster opportunities for distributive and redistributive justice. Documenting the intersectional and varied nature of discrimination and oppression clarifies areas in need of resources, attention, and further activism. Learning from social activist efforts can enhance bioethics scholarship devoted to problematizing and providing solutions for racial injustice. For instance, drawing on intersectionality, researchers have illustrated how multifaceted differences influence patient-clinician interactions (Wilson et al. 2019). Building this understanding of multifaceted differences and their bearing on patient-clinician interactions hones in on the institutional practices within the clinical environment that unfairly advantages some and disadvantages others (Wilson et al. 2019). Knowing which institutional practices beget which harms is the first step toward mitigation and reparation. Drawing upon intersectionality, bioethics can become more sensitive to the complex nodes of inequality that are endemic in society (Grzanka et al. 2016).

Finally, intersectionality cultivates alliance-building that better supports social change and fosters solidarity and cohesion (Roberts and Jesudason 2013). As an interdisciplinary field, bioethics is already familiar with the significance of leveraging diverse viewpoints and perspectives to address ethical issues. Intersectionality would permit the field to take its interdisciplinarity further by enhancing the recognition and inclusion of diverse, non-academic communities in bioethical scholarship. Further, an intersectional approach will help to identify whom to include in alliance building. By pointing out common experiences of oppression shared by different parties, bioethics scholars can help to create benefit-sharing policy priorities. For example, shared social and ethical concerns about reproductive genetic technologies brought together reproductive justice, racial justice, women’s rights, and disability rights activists (Roberts and Jesudason 2013). These entities came together to learn from each other’s experiences of inequality. As a result, they were able to develop collectively a more thorough understanding of how systems of privilege and disadvantage operate together, which in turn better equipped them to dismantle harmful systems through activism and policy (Roberts and Jesudason 2013, 315).

Critically, employing intersectionality in alliance-building should not erase the unique experiences, needs, and interests of various communities. Rather, intersectionality ought to illuminate differences so as to create solidarity in oppressive contexts that thrive on division and are harmed by unification (Roberts and Jesudason 2013, 315). Bioethics should draw upon the alliance-building that intersectionality endorses and that activist groups have adopted to achieve health justice. The field is already beginning to recognize the need for and value of community engagement (Pratt and de Vries 2018); grassroots, philanthropic activist efforts like BLM are an excellent example of how to engage and be responsive to the needs of communities.

Conclusion

Achieving justice requires engaging in difficult conversations and shifting the balance of privilege, power, and professional attention. To support racial justice and the flourishing of Black lives, bioethics will need to examine relationships between different structures and systems that combine to perpetuate racial injustice. In other words, for bioethics to genuinely articulate that Black lives matter, it will need to move towards intersectionality. To successfully move towards an intersectional bioethics, it would behoove the field to celebrate, center, and learn from, but not co-opt the work of, individuals, organizations, advocacy, and activist groups like BLM who exist outside academia and are already working to combat injustice and inequality in health and society (Grzanka et al. 2016). Failing to do so will ensure that bioethics perpetuates the very inequalities and injustices it is meant to address.

Black Lives Matter: a call for abolition ethics

Jennifer James, PhD, MSW, MSSP

I began to study and consider racism in medicine when I was a graduate student, but it has been a part of my story for my entire life. My father was born quite prematurely in a car. It was the 1950s, and the more I have learned about pregnancy, childbirth, and neonatal care, the more of a miracle it seems that both he and my grandmother survived. The reason my father was born in a car was that his parents could not find a hospital that would admit them. They were turned away from multiple hospitals that would not care for Black patients. This is, of course, illegal now, and I would assume most would agree it is morally abhorrent. However, segregation within medicine has never gone away and racism continues to be a driving force in differential and violent healthcare.

Segregated care

I recently interviewed an OB/GYN resident as a part of an ongoing research project. She described seeing her first patient on the very first day of her residency program. This patient was in a special unit. The resident described going down to the basement. There were very few windows, and she described it as feeling “like it’s maybe a place that you should be scared about being in … it makes you feel like you’re stepping into an area that could be violent.” There were bars and locks on the doors, and guards were present. She saw her patient, who had just given birth, and wanted to discuss birth control options. She described her response to meeting with this patient and recalled, “I just felt so sad that it’s like she’s in this kind of depressing, very heavily guarded unit in the basement without like windows, etc. And she can’t be with her baby.”

If I told you that this hospital has a special unit where Black patients are cared for, with bars on the windows, locks on the doors, and police present, perhaps even in the room during an exam, you would likely be horrified. I would tell you that it is for your safety and theirs and that the hospital does everything it can to ensure excellent care for all patients across all units. Yet, the idea that we were systematically treating one group of patients so differently—treating them as dangerous—would be deplorable.

I do not have the racial demographics of the special unit this resident described to me, but if national statistics are any indication, it is likely overwhelmingly Black and Brown. It is likely that nearly all the patients there were living in poverty. They are disproportionately likely to be disabled, queer, or trans (Sawyer and Wagner 2022). The patients in this unit are incarcerated.

Over the last two years, I have been shocked—pleasantly shocked but shocked nonetheless—to see the rapid rise of interest in and awareness of racism in medicine. Many scholars have made a case for racism as a critical issue in bioethics and called for more research and teaching focused on racism within both bioethics and healthcare more broadly (Braddock 2021; Fletcher et al. 2022; Ray 2021c; Russell 2021; Yearby 2020). I fully endorse these calls, and have even made them myself (James 2022; James and Iacopetti 2020), yet I have struggled with a sense that calls for examining racism have been taken up without addressing key aspects of the Black Lives Matter movement.

Mass incarceration and policing are some of the most glaring examples of legalized racism in our society, yet they are often some of the least discussed within bioethics and medicine. Black Lives Matter, as a movement, was formed in response to racism and state violence. I argue that, to date, bioethics has failed to situate the role of medicine within these violent systems or acknowledge the role of bioethics in perpetuating carceral healthcare.

Medicine and carcerality

The effects of incarceration are far-reaching. While nearly two million people are incarcerated today, more than 79 million people have a criminal record, and 113 million adults—that is, half of all adults in the US—have an immediate family member who has been to prison or jail (Sawyer and Wagner 2022). These devastating statistics alone should inspire bioethics to take a stand and work to alter this system dramatically. Yet, I am even more concerned with the ways in which we may reify and perpetuate carcerality from within our field.

Medicine extends carcerality in numerous ways, and common medical practice is often grounded in a carceral logic. We see this demonstrated in the ways “clinicians use their authority and power to reinforce patterns of racial oppression” (Tran et al. 2022, 182). A carceral logic is based on the idea that people are fundamentally incapable of change and should be approached with suspicion and derision, from a place of power and control. Carceral medicine is assuming the worst in patients. It is centering their capacity for harm without seeing how they have been harmed. It is protecting hospitals and staff from patients—both in terms of physical safety and potential liability—rather than protecting patients from the harms of medicine perpetuated across generations. Fifty years after the end of the Tuskegee study, is bioethics merely observing racism without stepping in to intervene in the racist policies and practice at work within and on behalf of medicine?

Not all hospitals have locked forensic units like the one I described above. It is common that patients from jails and prisons receive healthcare in ordinary rooms alongside other patients. Yet, carcerality remains a constant presence. Patients are routinely shackled—including during informed consent—and often, this comes at the request or policy of the hospital system. Correctional officers often remain present during medical procedures and exams, often witnessing the most vulnerable and devastating conversations of an individual’s life. Research has shown that shackling and police presence exacerbate clinician bias and can cause both active and passive harm to patients (Haber et al. 2022). Worrisome to me is that, while providers are allowed to ask for shackles to be removed during care, the majority do not.

As Haber et al. (2022, 1260) describe, “by deferring the management of shackles in the acute care setting, we passively accept a structure that perpetuates inequities in care for incarcerated individuals, a population already at risk for poor health outcomes.” This passive acceptance of carcerality is seen throughout medicine. A recent study of emergency department physicians found that all reported interacting with police on a daily basis and that these interactions often involved intimidation, diminished patient privacy and confidentially, and patients being unwilling to speak freely or even unwilling to seek care (Harada et al. 2021). Emergency departments often serve as “sites for carceral reach and control” (Wahbi and Beletsky 2022, 25), where medicine and police collaborate to conduct searches, investigate, and restrain patients. Inside and outside of the hospital setting, involuntary commitment acts as a “public health/medical to prison pipeline,” with patients “violently restrained” and taken to jail-like settings under laws that have been shown to be “ineffective, unethical, and racist,” as Wahbi and Beletsky (2022, 25) describe it. The engagement of law enforcement, especially for those in crisis and people of color, is dangerous and often deadly. Yet, the potential for these interactions is, in too many cases, created or reinforced by medicine.

In 2019, a young Black man named Elijah McClain was walking home in Colorado when he was stopped by police. Police tackled him and placed him in a carotid hold. When paramedics arrived on the scene, they determined he was showing signs of “excited delirium” and injected him with ketamine. Elijah died a few days later. The autopsy report at the time listed his cause of death as “undetermined” and noted features of “excited delirium” (St. Fleur 2022). What happened to Elijah McClain is a too-common story. Osagie Obasogie found 166 cases of people who died in police custody between 2010 and 2020 and for whom excited delirium was listed as a possible cause of death. Of those, 43 percent of the victims were Black (Obasogie 2021). “Excited delirium,” while not officially classified in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5), continues to be used to justify police force or explain deaths in state custody on the basis of medicine.

My aim in raising these examples is to highlight the intersection of carcerality and medicine. As a field, bioethics is uniquely positioned to identify these intersections and evaluate the beneficence and non-maleficence of acts and interventions that serve to limit patient autonomy and are distributed unequally. Medicine routinely acts as an agent of the state and perpetuates state violence. To claim that Black Lives Matter and purport to advance anti-racism while at the same time contributing to the over-policing and surveillance of racialized communities is a contradiction—a contradiction that nearly every major medical center in the United States displays daily. Bioethics must be a leading voice in considering structural and systemic harm that affects the lives of patients and providers.

Black Bioethics is Abolition Bioethics

There are countless examples of structural racism in medicine and many areas where bioethics has failed to act. I raise issues of policing and incarceration here to highlight what feels like a striking disconnect between calls to focus on racism, which emerged during the Black Lives Matter moment, and what feels like a silence around these forms of violence from within bioethics. While some attention has been paid to bioethical questions that exist inside prisons (e.g., forced feeding during hunger strikes), little attention is paid to the question of prisons and policing themselves. Medicine and carcerality are inextricably linked; they reify and reproduce one another. Bioethics, in its failure to center carcerality and take action against state violence, reifies and perpetuates harm against Black Americans.

Abolishing racism in medicine and abolishing state violence are not different projects. Abolition is an idea, a goal. But I would contend it is more than that. Abolition is a verb. Abolition is an investment in our community; it is an investment in an ethos of care and in the fight for justice. Abolition is decentering systems of power and deconstructing systemic violence. The project of bioethics should be a project of abolition. Our field can and should bring people together in dialogue, invest in a sense of community, and dismantle racist power structures to create a vision of healthcare “where it is possible to address harm without relying on structural forms of oppression or the violent systems that increase it” (Kaba 2021, 25).Wilson (2022, S15–16) wrote that “a Black feminist bioethics begins with community … a Black feminist bioethics may be precisely the foundational bioethical approach that is needed.” I assert that a Black feminist bioethics is an abolitionist bioethics, and the time for Black feminist bioethics is now. Bioethics has, too often and for too long, been a tool for protecting institutions and maintaining equilibrium within unjust systems. Bioethics can and should be a set of people, ideals, and knowledge used to center community, begin conversations, and stand up against violence. Bioethics has taken up the call that Black Lives Matter. The answer to that call is abolition.