The discussion of racism and structural injustice in bioethics and health-related fields must advance. Below are resources which can invite and shape reflection as well as prompt action to combat racism in our society, policies, and interpersonal actions. We are grateful for these contributions from faculty and friends of the Center.
This list embraces the importance of recognizing that multiple sources of injustice, oppression, and bias intersect in the lives of individuals and in society’s policies and practices. Dorothy Roberts observes, for example that “Racism and patriarchy are not two separate institutions that intersect only in the lives of Black women. They are two interrelated, mutually supporting systems of domination, and their relationship is essential to understanding the subordination of all women.”* Indeed, they interconnect in the experience of people of all genders, as well as economic and political structures that form the context of health and disease, public health, and healthcare. Moreover, it is valuable to recognize differences and similarities across experiences, and to reason by analogy. Therefore, though its focus is on racism, this list includes some resources related to sexism, ableism, and other persistent injustices that plague bioethics and health-related fields.
Works of fiction, including some young adult fiction, often promote discussion more effectively than didactic lessons and argument. For this reason, we have included works of fiction in this list. Iris Murdoch suggests, “One is often compelled almost automatically by what one can see. ... [T]he work of attention builds up structures of value round about us, … at crucial moments of choice most of the business of choosing is already over. This does not imply that we are not free, certainly not. But it implies that the exercise of our freedom is a small piecemeal business which goes on all the time and not a grandiose leaping about unimpeded at important moments.” Narratives, including fictional narratives, both afford us opportunities to see what we may not encounter in life, and demonstrate how, again quoting Murdoch, “moral life, on this view, is something that goes on continually, not something that is switched off in between the occurrence of explicit moral choices. What happens in between such choices is indeed what is crucial.” ¤
Two topics are particularly underrepresented in this list: (1) disparities in health and healthcare, and (2) challenges of recruiting representative study populations in research. Literature searches on either topic will yield voluminous citations. Yet, too often research on these disparities focuses on race, not racism. Too often underrepresentation of people of color in research is attributed to their mistrust of medico-scientific research and the healthcare system, rather than to a legacy of untrustworthy practices and institutions. (See On Racism: A New Standard For Publishing On Racial Health Inequities by Rhea W. Boyd et al., 2020.)
We recognize that a long history of injustice and ongoing injustices cannot be addressed by providing resources or by engaging in discussion alone. But injustice of the past and present also cannot be addressed without resources and informed, committed discussion. In that spirit and in good faith, the Center offers the following and invites others’ comment, contributions, and indeed commitment.
Events – Collections & Lists – Syllabi – Bioethics Books – Other Books – Fiction – Other Media – Articles
The transcript of Middlebury College Professor Susan Burch’s talk, Institutional Racism: Remembering Struggle, Survival, and Resistance at the Canton Asylum for Insane Indians, 1902-2015, presented January 19, 2022, is available here.
Racism, Inclusion and Justice: Interrogating Bioethics, Patricia A. King, JD (Professor Emerita, Georgetown University Law Center) brings her expertise in the study of law, medicine, ethics, and public policy to comment on issues of racism, inclusion, and justice within the field of bioethics, November 18, 2021.
Racism and Its Implications for Clinical Trials: A Workshop to Promote Understanding and Action featured a keynote address by Stephen B. Thomas, PhD (University of Maryland) Clinical Research: COVID-19 Pandemic on Building Trust Community Engaged Research and additional lectures Understanding Racial Inequities in COVD-19 Vaccine Uptake in Allegheny County with Ashley Hill, DrPH, MPH (University of Pittsburgh), Patricia Documet, MD, DrPh (University of Pittsburgh), and Uchenna Mbawuike (University of Pittsburgh) and The Challenge of Health Equity in Clinical Research with Jonathan Jackson, PhD (Massachusetts General Hospital), October 20, 2021.
Reckoning with Anti-Blackness, this session, moderated by Jennifer McCurdy, PhD, MH, BSN (University of Alaska Anchorage) discusses an anti-racism initiative co-led by Faith E. Fletcher, PhD, MA (The Hastings Center) and a diverse steering committee of justice-focused bioethics scholars, Claretta Y. Dupree, PhD, RN (RACE Affinity Group), Keisha S. Ray, PhD (University of Texas Health Science Center at Houston), Virginia A. Brown, MA, PhD (University of Texas at Austin). This collaborative initiative reflects on the past and present work of scholars of color and envisions and frames a braver, broader, and more just bioethics for the future, October 14, 2021.
Innovation for Equity: Fostering a More Democratic & Just Scientific Enterprise, Alondra Nelson, PhD, Harold F. Linder Professor, Institute for Advanced Study at Princeton University gave the inaugural lecture in the Columbia University Department of Medical Humanities and Ethics Grand Rounds Series on Race and Biomedicine, September 23, 2021.
Homegoing: Transforming the Datafication of Black Death into the Recovery & Restoration of Black Humanity, Kim Gallon, Director of COVID Black, reflects on the counting of Black lives lost to COVID-19 and a Black health data organization that uses data to tell stories about the Black lived experience to advocate for health equity.
Genomics and Data Sovereignty: Policy and Deliberative Approaches for Engaging Indigenous Communities with Nanibaa’ Garrison, PhD and panelists Stephanie Russo Carroll, DrPH, and Justin Lund, MA, who discuss Indigenous data sovereignty and emerging principles for data governance, how research policies work across institutions, and engaging tribes in deliberations about genomics issues to influence social and research policy, May 14, 2021.
Intersection of Race, Class and Health with Dayna Bowen Matthew, JD, PhD (Dean and Harold H. Greene Professor of Law, George Washington University) discusses themes from her books: Just Medicine: A Cure for Racial Inequality in American Health Care (2015) and Just Health: A Plan to End Structural Racism and Achieve Health Equity in America (forthcoming summer of 2021), April 12, 2021.
Structural Racism in the COVID-19 Pandemic: Moving Forward with panelists Maya Sabatello, LLB, PhD (Columbia University), Georges C. Benjamin, MD (American Public Health Association), Ruqaiijah Yearby, JD, MPH (Saint Louis University), and John Lantos, MD (Children's Mercy Kansas City), March 29, 2021. The discussion responded to Sabatello’s AJOB Target Article, Structural Racism in the COVID-19 Pandemic: Moving Forward.
Black Feminist Health Science Studies Symposium with Ruha Benjamin, PhD (Princeton University), Harriet Washington (Science writer, editor, and medical ethicist), Evelynn Hammonds, PhD (Harvard University), Patricia Williams, JD (Northeastern University), Nicole Charles, PhD (University of Toronto Mississauga), OmiSoore Dryden, PhD (Dalhousie University), Adeola Oni-Orisan, MD, PhD (University of California), Ugo Edu, MPH, PhD (UCLA), Moya Bailey, PhD (Northeastern University), and Whitney Peoples, PhD (University of Michigan), March 18, 2021. The first Black Feminist Health Science Studies Symposium is an introduction to the field and collective that claim the name. This symposium addressed the need to integrate Black feminism into science, medicine, technology, and health.
Policing Reproduction: From Slavery Through the Present with Michele Bratcher Goodwin (Chancellor’s Professor of Law and Director, Center for Biotechnology and Global Health Policy, University of California Irvine School of Law) March 16, 2021.
Standing in the Shadow of Slavery: Race and American Gynecology's Origins with Deirdre Cooper Owens (University of Nebraska) gave the Morris Turner Memorial Lecture, February 16, 2021.
Advancing Social Justice, Health Equity, and Community with Patrick T. Smith, PhD, Associate Research Professor of Theological Ethics and Bioethics, Duke Divinity School and Mildred Z. Solomon, EdD, President, The Hastings Center, February 9, 2021. Drs. Smith and Solomon explored how insights afforded by Martin Luther King and the 20th century civil rights movement might help redress today’s health inequities, particularly those rendered painfully visible by the current pandemic, with members of African American and LatinX communities dying at a rate three times greater than those in White communities.
Put Me Back Like They Found Me with Daisy Patton (artist), Virginia Espino, PhD (oral historian and health activist) and Nilmini Rubin (the daughter of Mithra Ratne, a librarian and Sri Lankan immigrant who was sterilized following her daughter’s birth), February 8, 2021. Artist Daisy Patton's exhibit, “Put Me Back Like They Found Me,” tells the stories of female survivors of horrific, regular practices of forced sterilization in the US. Patton embroiders portraits of survivors as a nod to domestic labor, “women’s work,” and thread as a metaphor for life.
Meeting the Moment: Bioethics in the Time of Black Lives Matter with Camisha Russell, PhD (University of Oregon) on February 2, 2021.
First Peoples Past & Present: Native Health and Voting Power, a panel discussion with Gregory Evans Dowd, PhD (University of Michigan) and Kimberly R. Huyser, PhD (University of British Columbia), addresses the current pandemic’s effects on Native communities and the resiliency of Native people, January 27, 2021.
It’s Not All Black and White: A History of Race in Medicine with Kristen Ann Ehrenberger, MD, PhD (University of Pittsburgh), January 26, 2021. Her talk begins at minute 50:30.
How Should Equity and Fairness Shape Emergency Standards of Care? with Nneka Sederstrom and Alex London discussing ethical foundations for allocation of scarce healthcare resources during times of crisis (triage). Dr. London discusses the interplay of justice considerations, claims on society for resources necessary to achieve a “normal lifespan” (a “fair innings approach”) and Dr. Sederstrom employs a critical race theory framework to examine the impact of racism on health, healthcare, and triage decisions, January 13, 2021.
Who Takes on the Risk? Trust and Race in American Medicine with Laura Specker Sullivan who presented this Ethics Grand Rounds lecture in the Department of Obstetrics, Gynecology and Reproductive Sciences on December 15, 2020.
Health Equity, Racism, and This Moment in Time, The Hastings Center, August 13, 2020.
Black Bioethics: Racism, Police Brutality, and What It Means for Black Health, a bioethics.net webinar hosted by associate editor Kayhan Parsi, JD, PhD, featuring panelists Keisha Ray, PhD, Brian Williams, MD, Ruqaiijah Yearby, JD, MPH, and Patrick Smith, PhD, July 18, 2020.
ELSI Friday Forum: Addressing Racism in Research and Clinical Practice.
ELSI Friday Forum: Structural Racism and Genomics in the Time of COVID.
Feminist Future Series on Anti-Racism, August – September 2020.
The Association of American Medical Colleges (AAMC) featured a talk by social justice activist Bryan Stevenson, JD, who is the Executive Director of the Equal Justice Initiative, on November 9, 2019. View his interview with AAMC staff writer Stacey Weiner, Bryan Stevenson: It’s time to change the narrative around race and poverty, or his related 2012 TED talk, We need to talk about an injustice.
Those seeking speakers in bioethics should consult #BlackBioethics, a list of Black bioethicists intended to amplify their voices and increase awareness of their expertise and work.
TOOLKIT: Bioethics and Race #BlackBioethics serves as a resource of writing on bioethics and race, specifically about African-Americans and Black People in the US. It is posted at bioethics.net, and was compiled by Keisha Ray, PhD, Assistant Professor, McGovern Center for Humanities & Ethics, University of Texas Health Science Center, and senior editor of the American Journal of Bioethics online blog site to which she is a regular contributor.
The New England Journal of Medicine’s Race and Medicine collection
Race, Genetics, and Genetics Education, with particular attention to “racial essentialism,” collected by Brian M. Donovan, PhD, Research Scientist, BSCS Science Learning, and Daphne O. Martschenko, PhD, Postdoctoral Research Fellow, Stanford Center for Biomedical Ethics, for ELSI Hub, where one can search, for example, on ‘racism’ in the Topics search
Lists of fiction and nonfiction books, films, and other media:
Some faculty have generously shared or posted online their syllabi, products of their intellectual labor and expertise, and these syllabi contain valuable resources. Credit should be given not only to the authors of the resources, but when the structure of learning reflected in the syllabus is employed, to the syllabus author.
American Philosophical Association Diversity and Inclusiveness Syllabus Collection, including some Bioethics syllabi with specific racism-relevant components
Anti-Black Racism: History, Ideology, and Resistance from the Office of the Provost (PITT 0210)
Black Lives Matter Syllabus by Frank Leon Roberts (The New School)
Racism in Medicine by Alaina James (School of Medicine, MS2)
Rhetoric and Human Rights by Lester Olsen (COMM/GSWS 2215)
Sex, Race, and Popular Culture by John Musser (GSWS 0200)
Books on Social Class, Education, and Poverty
Betty Wolder Levin and Nina Glick Schiller observed in 1998 that social class had been largely unaddressed in bioethics.⁺ Yet education, income, and wealth are obviously affected by racism and structural injustices, and clearly affect health and well-being. Thus, though few of the following resources focus directly on bioethics, they are relevant to bioethical issues.
Baby Markets: Money and the New Politics of Creating Families edited by Michele Bratcher Goodwin, 2010
Invisible Americans: The Tragic Cost of Child Poverty by Jeff Madrick, 2020
Shattered Bonds: The Color of Child Welfare by Dorothy Roberts, 2002
Talking to Strangers: Anxieties of Citizenship since Brown v. Board of Education by Danielle S. Allen, 2004
Fiction Inviting Consideration of Racism
Work by Maya Angelou, James Baldwin, Octavia Butler, Ralph Ellison, Langston Hughes, Zora Neale Hurston, Toni Morrison, Gloria Naylor, Alice Walker, Richard Wright, and less established authors ...
Darktown by Thomas Mullen, 2016, set in 1948 when the Atlanta Police Department is forced to hire its first Black officers
Daughters of Jubilation by Kara Lee Corthron, 2020, is a young adult romance novel set in South Carolina in 1962, that addresses issues of racism, white supremacy, and sexual abuse; the author reads from her book during this interview with the Contemporary American Theater Festival
Dear Martin by Nic Stone, 2017, is a young adult novel in which Justyce writes diary-like letters to the imagined Martin Luther King, Jr., as he navigates his experiences at an elite Atlanta boarding school and of racial profiling by the Atlanta police; in this NPR interview, the author discusses the2020 sequel, Dear Justyce, in which her protagonist receives letters from a childhood schoolmate, now accused of killing a police officer and incarcerated
Everyday People (2001) by Stewart O’Nan, a Pittsburgh author, who set this novel in 1998 East Liberty
The Hate U Give by Angie Thomas, 2017, is a young adult novel credited for teaching—without preaching—about police abuse of power, the American justice system, and the structural racism in which they participate, and about growing up smart, insecure, and code-switching; NPR “It’s Been a Minute” interview with the author about this and her 2019 novel On the Come Up
The Known World by Edward P. Jones, 2003, set in antebellum Virginia, uses the little-known fact that some free Black people owned slaves to examine slavery as an “entrenched evil,” “a morally bankrupt social institution”; NPR interview with the author
Lightening Men by Thomas Mullen, 2017, following on the author’s book, Darktown, set in 1950 Atlanta
Little Fires Everywhere by Celeste Ng, 2017, was described by The Boston Globe as “a pointed and persuasive social critique, teasing out the myriad forms of privilege and predation that stand between so many people and their achievement of the American dream”; the author’s interview at the 2018 National Book Festival
Members Only by Sameer Pandya, 2020, depicts the experience of its Indian-American protagonist who says something racist during an interview of a Black couple seeking to join a tennis club and who almost simultaneously comes under attack by White pride groups who find one of his lectures anti-American; related NPR interview
Salvage the Bones by Jesmyn Ward, 2011, set in Bois Sauvage, a predominantly black Mississippi bayou town, and spanning the 12 days leading up to and just after Hurricane Katrina that “unmade the world” as the author knew it
Sing, Unburied, Sing by Jesmyn Ward, 2017, interweaves stories of characters both living and dead to present the realities of life in impoverished rural Mississippi and to explore what it means to be a Black American in the rural South today and in decades past; related PBS interview
Stateway’s Garden by Jasmon Drain, 2020, is a collection of stories featuring residents of one of Chicago’s housing projects, so near and yet so far, from Chicago’s Gold Coast; available in the SoundCloud read by Guy Lockard, Shayna Small, Sullivan Jones
All My Relations, a podcast about Native culture and identities, hosted by Matika Wilbur and Adrienne Keene
An Indigenous bioethicist on CRISPR and decolonizing DNA - Krystal Tsosie on NOVA, September 11, 2020.
Code Switch, an NPR podcast hosted by journalists of color, addresses issues of race and identity
Confronting Racism—TED Radio Hour on NPR, March 29, 2019, features Brittney Cooper (on the need to acknowledge history of racism), Monique Morris (on schools’ disciplining of Black girls), Pat Ferruci (on racial bias in sports journalism), Howard Stevenson (on everyday racism), and Travis Jones (on what White people should do).
How Racism Makes Us Sick – TEDMED Talk by David R. Williams, 2016
The Intersection Between Race and Birth Outcomes, Rachel Hardeman, PhD, MPH, Assistant Professor in the Division of Health Policy & Management at the University of Minnesota, School of Public Health, Arch Beat podcast
Invisibilia, an NPR podcast exploring influences on people’s assumptions, behaviors, and beliefs, including the influence of racism
Isabel Wilkerson Wants to Change How We Understand Race in America—namely, in terms of the caste systems evident in other countries, on the Ezra Klein Show, August 2020
Our Problem is Power, a discussion of anti-racism with Olúfẹ́mi Táíwò, PhD, who argues for a collaborative way of thinking about multi-racial struggle against racism, in contrast to other recent authors who emphasize the development of anti-racist thought or moral character, June 19, 2020
The Problem with Race-based Medicine – TEDMED Talk by Dorothy Roberts, 2015
Race: The Power of an Illusion—Three-part PGS series from California Newsreel
The Racial Politics of Time – TEDWomen Talk by Brittany Cooper, 2016
The Urgency of Intersectionality – TEDWomen Talk by Kimberlé Crenshaw, 2016
Articles at the Intersection of Race, Bioethics, and Health
Racism has not been a prominent topic in the bioethics literature. A PubMed search on (JAMA x racism) and (NEJM x racism) yields 97 articles. Some of these are listed below. It is worth noting that a large proportion of the articles listed here are part of recent special issues of two bioethics journals. The AMA Journal of Ethics issues focus more directly on health inequities, though racism is obviously implicated:
AMA Journal of Ethics Racial and Ethnic Health Equity in the US: Part 1. February 2021, 23(2): E83-211. doi: 10.1001/amajethics.2021.86.
AMA Journal of Ethics Racial and Ethnic Health Equity in the US: Part 2. March 2021, 23(3): E213-286. doi: 10.1001/amajethics.2021.215.
The American Journal of Bioethics (AJOB), February 2021 special issues focuses explicitly on racism, with three target articles:
open peer commentaries:
and three guest editorials:
It is critical not to conflate problems of racism with the problems of urbanism or problems faced by those who are underserved and underrepresented in urban areas. Nevertheless, racism undergirds many of the neglected issues addressed by urban bioethics.
Blustein J. Setting the Agenda for Urban Bioethics. Journal of Urban Health 2001, 78:7-20.
Blustein J, Fleischman AR. Urban Bioethics: Adapting Bioethics to the Urban Context, Academic Medicine 2004, 79(12):198-1202.
Cecire VR, Blustein J, Fleischman AR. Urban Bioethics. Kennedy Institute of Ethics Journal 2000, 10(1):1-20.
Cooper EB, Zipursky BC. Foreword: Urban Bioethics, Fordham Urban Law Journal 1997, 24:663-666.
Fergerson G. Culture, class, and service delivery: The politics of welfare reform and an urban bioethics Agenda. Journal of Urban Health 2001, 78: 81–87. https://doi.org/10.1093/jurban/78.1.81
Fleischman AR, Levin BW, Meekin SA. Bioethics in the Urban Context. Journal of Urban Health 2001, 78:2-6.
Johnson N, Wahlert L. Urban Bioethics: A Call for the Prestige. Cambridge Quarterly of Healthcare Ethics 2019, 28(3):509-521. doi:10.1017/S0963180119000434
Indigenous Peoples and Bioethics
The University and the Center for Bioethics & Health Law—along with all the institutions and inhabitants of Pittsburgh—are situated on the unceded land of the Haudenosaunee Confederacy. A first step toward reconciliation and justice is acknowledgment of injustice.
Historically, in the United States, indigenous peoples have not been adequately, ethically, and respectfully served by healthcare systems and health research. In multiple ways, the health-related interests of indigenous peoples continue to be inadequately addressed both by healthcare systems and within research.
In the research context, issues of tribal sovereignty and respect for culture; community interests, engagement, and consent; and questions of fair benefit are prominent. Regarding health and healthcare, key issues are structural racism and structural inequalities, environmental justice, the trustworthiness and adequacy of public health interventions, and access to healthcare. It is noteworthy that more has been written in bioethics about research involving indigenous peoples than about the ethics of providing them healthcare.
*Roberts, D. Reconstructing the Patient: Starting with Women of Color, in Feminism & Bioethics: Beyond Reproduction, Oxford, 1996, pp. 116-143.
¤Murdoch, I. The Sovereignty of Good. Schocken Books, 1971, at p. 37.
⁺Levin, BU; Schiller, NG. Social Class and Medical Decisionmaking: A Neglected Topic in Bioethics, Cambridge Quarterly of Healthcare Ethics, 1998, 7:41-56.