If ever there was a shadow of a doubt, it is gone now: The past few years have laid bare the countless ways that race, or more accurately racism, impacts health and health care. The world has witnessed alarming racial disparities in Covid-19 infections, hospitalizations, and deaths in the United States as well as racial inequities in maternal mortality, heart disease, and access to health care, among other areas.
Racism is fundamentally an ethical problem, so one might reasonably expect the field of bioethics — the primary venue for addressing ethical questions in health and health care — to grapple with it in substantive and meaningful ways. But if the field’s central reference text, the “Encyclopedia of Bioethics,” is any guide, the problem of racism in health care has yet to garner the level of concern that it warrants.
That’s what my collaborator, Duke University bioethicist Patrick T. Smith, and I found when we examined how the encyclopedia has addressed racism in the four editions that have been published to date — in 2014, 2004, 1995, and 1978. Despite abundant real-world evidence of racism’s harms, the volumes contain scarcely any entries that address the issue, a shortcoming that has shown few, if any, signs of improving over the years.
The dearth of attention to racism is itself a signal of a kind of racism, made worse by the fact that there is so much more the encyclopedia could — and should — be saying on this front.
Since its inception, the “Encyclopedia of Bioethics” — simply titled “Bioethics” as of its latest edition — has aimed not only to reflect the field’s knowledge but also to shape and define bioethics itself. In the introduction to the 1978 edition, then editor-in-chief Warren T. Reich wrote that the text was intended, in part, to be “a resource for professional decision-making, for the development of public policies” as well as “to assist the formation of this field of study.” As such, the book is a valuable lens for understanding the place of racism in the work of bioethics.
But Smith and I found that, of the nearly 1,800 articles published across the four editions of the encyclopedia, only 13 addressed racism in a substantive way. By “substantive,” we mean articles that did some analytical or conceptual work regarding racism, beyond just briefly mentioning examples of racism or referencing race. Notably, our focus was on racism — and particularly anti-Black racism — not race. We adopted the definition of racism articulated in a 2019 article by David Williams and colleagues: “an organized social system in which the dominant racial group, based on an ideology of inferiority, categorizes and ranks people into social groups called ‘races’ and uses its power to devalue, disempower, and differentially allocate valued societal resources and opportunities to groups defined as inferior.”
Of the few entries that did address racism, several were repeats of articles that had been published in prior editions. The entries “Race and Racism” by anthropologist Atwood D. Gaines, “Minorities as Research Subjects” by historian Todd L. Savitt, and “Genetics and Racial Minorities,” initially written by physician James E. Bowman and later rewritten by anthropologist and bioethicist Sandra Soo-Jin Lee, each appeared in three successive editions (some with minor revisions). Three other articles —“Racism and Medicine,” “Racism and Mental Health,” and “Bioethics: African-American Perspectives” — were published only once, and do not appear in the encyclopedia’s most recent edition. In other words, across all four editions of the book, there were just six original entries about racism and bioethics. Though some articles attend to how racism has affected Black people in the U.S., virtually none explicitly mention “anti-Black racism.”
Transforming the “Encyclopedia of Bioethics” — and transforming the field of bioethics more broadly — will require deep attention to the nature of racism, its moral wrongness, and to anti-racist ethical responses.
The dearth of attention to racism is itself a signal of a kind of racism, made worse by the fact that there is so much more the encyclopedia could — and should — be saying on this front. Missing, for example, is the robust scholarship by dozens of experts who wrote about African American approaches to bioethics during the 1990s. Plus, the encyclopedia largely fails to articulate racism’s various definitions, characteristics, typologies, and its intersectional relationships with other forms of injustice. For instance, the volumes do not meaningfully distinguish between interpersonal, cultural, institutional, systemic, and structural forms of racism.
Perhaps most troubling, the encyclopedia does not clearly situate racism as a concern of justice (or, rather, injustice) that is in need of change. It does not address anti-racism, the dismantling of racism, or reparations. And it doesn’t acknowledge that bioethicists have a duty to put racial justice into practice, just as we have put into practice such principles as respect for autonomy, through the mechanism of informed consent.
Racism should be a core concern of bioethics, and the texts and academic resources we use should reflect that. Transforming the “Encyclopedia of Bioethics” — and transforming the field of bioethics more broadly — will require deep attention to the nature of racism, its moral wrongness, and to anti-racist ethical responses. If done well, that work won’t just give us a better reference text, it will give us a “braver bioethics” that centers justice and works to eliminate racism in all its forms.
Charlene Galarneau is a senior lecturer in the Department of Global Health and Social Medicine and a faculty member in the Center for Bioethics at Harvard Medical School. She is also an associate professor emerita in Women’s and Gender Studies at Wellesley College and an affiliate researcher at the Center for Antiracist Research at Boston University.