Racism and Bioethics Resources

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.

EventsCollections & ListsSyllabiBioethics BooksOther BooksFictionOther MediaArticles

Events

Future

October 20, 2021 – 9:30 am – 2:00 pm – Racism and Its Implications for Clinical Trials: A Workshop to Promote Understanding and Action  Medicine and clinical research have a long history of racism.  Working to change systems and structures to eliminate systemic racism in clinical research requires learning more about it, willingly engaging in difficult dialogue, and committing to a justice-oriented anti-racist praxis in research work. The goal of this workshop is to stimulate such dialogue and action among research teams at the University of Pittsburgh. Additional information about panel speakers is available here. Register here.

November 18, 2021 – 5:00 – 6:30 pm – Racism, Inclusion and Justice: Interrogating Bioethics – Patricia A. King, JD (Professor Emerita, Georgetown University Law Center) will bring 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. Register here.
 

Archived

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.

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Collections and Lists

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.

Black Feminist Health Science Studies Syllabus

Race, Bioethics, and Public Health Project, resources compiled by Roberto Sirvent, from the Yale Interdisciplinary Center for Bioethics 

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:

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Syllabi

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.

A History of Anti-Black Racism in Medicine by Antoine S. Johnson, Elise A. Mitchell, Ayah Nuriddin (African American Intellectual History Society)

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)

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Books

Books at the Intersection of Race, Bioethics, and Health

Acres of Skin: Human Experiments at Holmesburg Prison by Allen Hornblum, 1998

African American Bioethics: Culture, Race, and Identity, edited by Lawrence J. Prograis Jr. and Edmund D. Pellegrino, 2007

Application of Systems Thinking to Health Policy & Public Health Ethics: Public Health and Private Illness, by Michele Battle-Fisher, 2015

The Assisted Reproduction of Race by Camisha A. Russell, 2018

Bad Blood: The Tuskegee Syphilis Experiment by James H. Jones, 1981, 1993

Bioethics Research Concerns & Directions For African Americans edited by Marian Gray Secundy, Annette Dula, and September Williams, paperback, 2000

Blinded by Sight: Seeing Race Through the Eyes of the Blind  by Osagie Obasogie, 2013

Body and Soul: The Black Panther Party and the Fight Against Medical Discrimination by Alondra Nelson, 2012

Disrupting Queer Inclusion: Canadian Homonationalisms and the Politics of Belonging edited by OmiSoore H. Dryden and Suzanne Lenon, 2015

Fatal Invention: How Science, Politics, and Big Business Re-create Race in the Twenty-First Century by Dorothy Roberts, 2011; related WBEZ interview

Genealogy of a Gene: Patients, HIV/AIDS, and Race by Myles W. Jackson, 2015

Genetics and the Unsettled Past: The Collision of DNA, Race, and History edited by Keith Wailoo, Alondra Nelson, and Catherine Lee, 2012

The Immortal Life of Henrietta Lacks by Rebecca Skloot, 2010

It Just Ain't Fair: The Ethics of Health Care for African Americans edited by Annette Dula and Sara Goering, 1984

Just Medicine: A Cure for Racial Inequality in American Health Care by Dayna Bowen Matthew, 2015; the National Association of School Psychologists Social Justice Committee developed this guidance document to offer a structured way to engage in discussions about this book that it recommended as its “National Book Read” for the 2020–2021 school year

Killing the Black Body: Race, Reproduction, and the Meaning of Liberty, by Dorothy Roberts, 1997; hear the Henry L. Gates Jr., Lecture, “Killing the Black Body: A Twenty-Year Retrospective,” delivered by Dr. Roberts on April 27, 2017, at Yale University

Making a Place for Ourselves: The Black Hospital Movement, 1920-1945, by Vanessa Northington Gamble, 1995

Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington, 2006; related Democracy Now interview and NPR interview

Medical Bondage: Race, Gender, and The Origins of American Gynecology by Deirdre Cooper Owens, 2017

The Postgenomic Condition: Ethics, Justice & Knowledge after the Genome by Jenny Reardon, 2017; related Public Policy interview and Talks at GS interview

Private Bodies, Public Texts: Race, Gender, and a Cultural Bioethics by Karla FC Holloway, 2011

The Protest Psychosis: How Schizophrenia Became a Black Disease by Jonathan M. Metzel, 2010

Race After Technology: Abolitionist Tools for the New Jim Code by Ruha Benjamin, 2019

Race to the Finish: Identity and Governance in an Age of Genomics by Jenny Reardon, 2009

Reproductive Injustice: Racism, Pregnancy, and Premature Birth by Dána-Ain Davis, 2019 — This is the “One Book, One Community” book choice by the School of Public Health for Spring 2021. More information about joining the discussion is here.

Revisiting Race in a Genomic Age edited by Barbara A. Koenig, Sandra Soo-Jin Lee, and Sarah S. Richardson, 2008

The Social Life of DNA: Race, Reparations, and Reconciliation After the Genome by Alondra Nelson, 2016

A Terrible Thing to Waste: Environmental Racism and Its Assault on the American Mind by Harriet A. Washington, 2019; related NPR interview

Books Addressing Racism

Algorithms of Oppression: How Search Engines Reinforce Racism by Safiya Umoja Noble, 2018; related Open Transcripts talk by the author

The Autobiography of Malcolm X by Malcolm X and Alex Haley, 1965; a 1964 interview with Malcolm X from the AP archives

Automating Inequality: How High-Tech Tools Profile, Police, and Punish the Poor by Virginia Eubank, 2018; related Sounds of Ethics podcast

The Beast Side: Living and Dying While Black in America by D. Watkins, 2015; related NPR interview

Beyond Respectability: The Intellectual thought of Race Women by Brittney Cooper, 2017; NPR review

The Black Friend: On Being a Better White Person by Frederick Joseph, 2020, written for young people with interviews with other writers and activists; in this edition of The Tight Rope, hosts Cornel West and Tricia Rose speak with Joseph about myriad issues including his creation of the largest GoFundMe campaign in history

Breathe: A Letter to My Sons by Imani Perry, 2019; related Free Library of Philadelphia interview

Bring the War Home by Kathy Belew, 2018; NPR interview with the author

Captivating Technology: Race, Carceral Technoscience, and Liberatory Imagination in Everyday Life edited by Ruha Benjami, 2019

Caste: The Origins of Our Discontents by Isabel Wilkerson, 2020; related NPR interview

Dispatches from the Race War by Tim Wise, 2020; Apple Podcast with the author

Eloquent Rage: A Black Feminist Discovers Her Superpower, by Brittney Cooper, 2018; Smart Brown Girl Book Club conversation with the author

Hood Feminism: Notes from the Women that a Movement Forgot by Mikki Kendall, 2020; related NPR review by Ericka Taylor

Inside Organized Racism: Women in the Hate Movement by Kathleen Blee, 2012; the author on NPR’s Code Switch

Just Mercy: A Story of Justice and Redemption by Byron Stevenson; the author’s TED Talk

Me and White Supremacy: Combat Racism, Change the World, and Become a Good Ancestor  by Layla Saad, 2020; related NPR interview

Mediocre: The Dangerous Legacy of White Male America by Ijeoma Oluo, 2020; related Here and Now segment

Negroland: A Memoir by Margo Jefferson, 2015; related interview on NPR’s Code Switch

New Black Man (2nd ed) by Mark Anthony Neal, 2015; related NPR interview

The New Jim Crow by Michelle Alexander, 2012; related NPR interview

Sisters in Hate: American Women on the Front Lines of White Nationalism by Seyward Darby, 2020; related NPR interview

So You Want to Talk about Race by Ijeoma Oluo, 2018; related Talk at Google

The Souls of Black Folk by W. E. B. Du Bois, 1903; in 2003, Michele Norris hosted interviews in honor of the book’s 100th anniversary

The Warmth of Other Suns: The Epic Story of America's Great Migration by Isabel Wilkerson, 2010, is described as “the first complete history of the Great Black Migration from start to finish, north, east, west” told through the lives of three characters; NPR interview with the author

Well That Escalated Quickly by Franchesca Ramsey, 2018; related Comedy For Social Change from NPR

Why We’re Polarized by Ezra Klein, 2020; related interview by Klein of Sam Rosenfeld, author of the book The Polarizers: Postwar Architects of Our Partisan Era

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

Education and Equality by Danielle S. Allen, 2016; related 2011 Institute for Advanced Study lecture

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

The Tyranny of Merit by Michael Sandel, 2020; related TED Talk by the author and Harvard Magazine review by Spencer Lee Lenfield

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

Man Gone Down by Michael Thomas, 2007, is described as a “quietly passionate novel [that] is unapologetically autobiographical” in a review entitled “A Black Gatsby who also does drywall”

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

The Mothers by Brit Bennett, 2016, is noted for presenting Black families and friendships “where racism and suffering are present in the story but not the entire story”; NPR review by Annalisa Quinn

Nothing More Dangerous by Allen Eskens, 2019, explores the power dynamics of racial prejudice and social class in a small town in Missouri; interview with the author

The Revisioners by Margaret Wilkerson Sexton, 2019, traces one family across four generations from slavery to the present; NPR interview with the author

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

The Vanishing Half by Britt Bennett, 2020, explores racism through the lives of twin sisters, one living as White, the other as Black; NPR interview with the author and NPR review by Heller McAlpin

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Other Media

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

Seeing White, a 14-part documentary series on White Supremacy and Whiteness, with Scene on Radio host and producer John Biewen, 2017

The Urgency of Intersectionality – TEDWomen Talk by Kimberlé Crenshaw, 2016

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Articles

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:

  • Andrews BL, Friedman Ross L. Black Women and Babies Matter. The American Journal of Bioethics 2021, 21(2): 93-95. doi.org/10.1080/15265161.2020.1861384.
  • Beverly J, Hurley R. Counternarrative Themes. The American Journal of Bioethics 2021, 21(2): 72-74. doi.org/10.1080/15265161.2020.1861378.
  • Macneill P, Jordens CFC, Zion D, Dawson A. Bioethics as Engaged Activity. The American Journal of Bioethics 2021, 21(2): 64-66. doi.org/10.1080/15265161.2020.1861376.

and three guest editorials:


Bioethics and Racism:

Alpert A. Philosophy’s Systemic Racism, published by Aeon/Psyche, online newsletter, September 24, 2020.

Biggers A. Racism in Healthcare: What You Need to Know. Medical News Today, Sep 16, 2020.

Borrell LN, Elhawary JR, Fuentes-Afflick E, et al. Race and Genetic Ancestry in Medicine - A Time for Reckoning with Racism. NEJM 2021, 384(5): 474-480. doi: 10.1056/NEJMms2029562. PMID: 33406325.

Bridges KM, Keel T, Obasogie OK. Introduction: Critical Race Theory and the Health Sciences. American Journal of Law & Medicine 2017, 43(2-3): 179-182. doi.org/10.1080/15265161.2020.1863517.

Byrd WM, Clayton LA. Race, Medicine, and Health Care in the United States: A Historical Survey.  Journal of the National Medical Association 2001, 93(3 Suppl): 11S-34S.  PMID: 12653395 PMCID: PMC2593958.

Char DS, Shah NH, Magnus D. Implementing Machine Learning in Health Care - Addressing Ethical Challenges. NEJM 2018, 378(11): 981-983. DOI: 10.1056/NEJMp1714229.

Chattopadhyay S, Myser C, De Vries R. Bioethics and Its Gatekeepers: Does Institutional Racism Exist in Leading Bioethics Journals?  Bioethics Inquiry 2013, 10: 7-9. doi.org/10.1007/s11673-012-9424-5.

Chowkwanyun M, Reed AL. Racial Health Disparities and Covid-19—Caution and Context. NEJM 2020, 383(3): 201-203. DOI: 10.1056/NEJMp2012910.

Clark US, Hurd YL. Addressing Racism and Disparities in the Biomedical Sciences. Nature Human Behaviour 2020, 4: 774-777. doi.org/10.1038/s41562-020-0917-7.

Conley D. Toward a Two-Dimensional Conception of Socioeconomic Status for Health PolicyMilbank Quarterly Opinion. December 17, 2020. This is a commentary explaining how not only income and education, but also inter-generational wealth, and in turn racism, affect health disparities.

Danis M, Wilson Y, White A.  Bioethicists Can and Should Contribute to Addressing Racism. The American Journal of Bioethics 2016, 16(4): 3-12. doi.org/10.1080/15265161.2016.1145283.

Elias A, Paradies Y. The Costs of Institutional Racism and its Ethical Implications for Healthcare. Journal of Bioethical Inquiry 2021, 2: 1-14. doi: 10.1007/s11673-020-10073-0. Online ahead of print.

Fabi R, Goldberg DS. Bioethics, (Funding) Priorities, and the Perpetuation of Injustice. The American Journal of Bioethics 2021, 22: 1-14. doi: 10.1080/15265161.2020.1867934. PMID: 33480827.

Farley MA. Institutional Ethics Committees as Social Justice Advocates. Health Progress 1984, 65(9): 32-5, 56. PMID: 10268330.

Fulford B, Radden J. An Internal Racism. Bioethics 2002, 16(5): iii-viii. doi: 10.1111/1467-8519.00297. PMID: 12472086.

Fuller LL. Policy, Advocacy, and Activism: On Bioethicists' Role in Combating Racism. The American Journal of Bioethics 2016, 16(4): 29-31. doi: 10.1080/15265161.2016.1145287. PMID: 26982919.

Galarneau, C. Structural Racism, White Fragility, and Ventilator Rationing Policies. The Hastings Center, April 20, 2020.

Gee GC, Ford CL. Structural Racism and Health Inequities: Old Issues, New Directions. Du Bois Review 2011, 8(1): 115-132. doi: 10.1017/S1742058X11000130.

Gross MS, Norton A. The Birth of Injustice: COVID-19 Hospital Infection Control Policy on Latinx Birth Experience. The American Journal of Bioethics 2021, 21(3): 102-104. doi: 10.1080/15265161.2020.1870769. PMID: 33616488.

Grzanka PR, Brian J, Shim JK.  My Bioethics Will Be Intersectional or It Will Be [Bleep]. The American Journal of Bioethics 2016, 16(4): 27-29. doi.org/10.1080/15265161.2016.1145289.

Hagopian A, West KM, Ornelas IJ, et al. Adopting an Anti-Racism Public Health Curriculum Competency: The University of Washington Experience. Public Health Reports 2018, 133(4): 507-513. doi: 10.1177/0033354918774791. Epub 2018 May 30. PMID: 29847749.

Haupt L. Patient Welfare and Trust. The Hastings Center Report 2020, 50(1):2. doi: 10.1002/hast.1073. PMID: 32068282.

Ho, A.  Racism and Bioethics: Are We Part of the Problem?  The American Journal of Bioethics 2016, 16(4): 23-25. doi.org/10.1080/15265161.2016.1145293.

Hoberman, J.  Why Bioethics Has a Race Problem. The Hastings Center Report 2016, 46(2): 12-18. doi.org/10.1002/hast.542.

Kaebnick GE, Haupt L. Learning from a Pandemic. The Hastings Center Report 2020, 50(3):3. doi: 10.1002/hast.1115. PMID: 32596913.

Khazanchi R, Evans CT, Marcelin JR. Racism, Not Race, Drives Inequity Across the COVID-19 Continuum. JAMA Network Open 2020, 3(9): e2019933. doi:10.1001/jamanetworkopen.2020.19933.

Lewsley J. What are the Effects of Racism on Health and Mental Health? Medical News Today, July 28, 2020.

Non AL, Gravlee CC. Biology and Culture Beyond the Genome: Race, Racism, and Health. American Anthropologist, 2015 117(4): 736-749. doi.org/10.1111/aman.12365.

O’Brien R, Neman T, Seltzer N, et al. Structural Racism, Economic Opportunity and Racial Health Disparities: Evidence from U.S. Counties. SSM Population Health 2020, 11:1-6. doi.org/10.1016/j.ssmph.2020.100564.

Ogedegbe, G. Responsibility of Medical Journals in Addressing Racism in Health Care. JAMA Network Open 2020, 3(8): e2016531. doi:10.1001/jamanetworkopen.2020.16531.

Olszewski AE, Scott M, Patneaude A, et al. Race and Power at the Bedside: Counter Storytelling in Clinical Ethics Consultation. The American Journal of Bioethics 2021, 21(2): 77-79. doi: 10.1080/15265161.2020.1861369. PMID: 33534694.

Oni-Orisan A, Mavura Y, Banda Y, Thornton TA, Sebro R. Embracing Genetic Diversity to Improve Black Health. NEJM  2021, 384(12):1163-1167. doi: 10.1056/NEJMms2031080. PMID: 33567186.

Owens K, Walker A. Those Designing Healthcare Algorithms Must Become Actively Anti-Racist. Nature Medicine 2020, 26(9): 1327-1328. doi: 10.1038/s41591-020-1020-3. PMID: 32908272.

Parker LS, Satkoske VB. Ethical Dimensions of Disparities in Depression Research and Treatment in the Pharmacogenomic Era. Journal of Law, Medicine & Ethics 2012, 40(4): 886-903. doi: 10.1111/j.1748-720X.2012.00718.x. PMID: 23289692.

Parsi K. The Unbearable Whiteness of Bioethics: Exhorting Bioethicists to Address Racism. The American Journal of Bioethics 2016;16(4):1-2. doi: 10.1080/15265161.2016.1159076. PMID: 26982910.

Randall VR. Slavery, Segregation and Racism: Trusting the Health Care System Ain't Always Easy! An African American Perspective on Bioethics. St Louis University Public Law Review 1996, 15(2): 191-235. PMID: 11656870.

Reverby SM. Compensation and Reparations for Victims and Bystanders of the U.S. Public Health Service Research Studies in Tuskegee and Guatemala: Who Do We Owe What? Bioethics 2020, 34(9): 893-898. doi: 10.1111/bioe.12784. Epub 2020 Jun 30. PMID: 32608027.

Russell, CA. Questions of Race in Bioethics: Deceit, Disregard, Disparity, and the Work of Decentering. Philosophy Compass 2016, 11(1): 43-55. doi.org/10.1111/phc3.12302.

Sabatello M, Jackson Scroggins M, Goto G, et al. Structural Racism in the COVID-19 Pandemic: Moving Forward. The American Journal of Bioethics 2021, 21(3): 56-74. doi: 10.1080/15265161.2020.1851808. Epub 2020 Dec 19. PMID: 33345745.

Sakran JV, Hilton EJ, Sathya C. Racism in Health Care Isn't Always Obvious. Scientific American, July 9, 2020.

Sullivan LS. Trust, Risk, and Race in American Medicine. The Hastings Center Report 2020, 50(1): 18-26. doi: 10.1002/hast.1080. PMID: 32068281.

Stanley J, Harris R, Cormack D, et al. The Impact of Racism on the Future Health of Adults: Protocol for a Prospective Cohort Study. BMC Public Health 2019, 346:1-10. doi.org/10.1186/s12889-019-6664-x.

Stone, J. Racism and Bioethics: Experiences and Reflections. The American Journal of Bioethics 2016, 16(4): 13-35. doi.org/10.1080/15265161.2016.1145304.

Tello, M. Racism and Discrimination in Health Care: Providers and Patients. Harvard Health Blog posted January 16, 2017, updated July 9, 2020.

Treadwell, HM. The Pandemic, Racism, and Health Disparities Among African American Men. American Journal of Men’s Health August 7, 2020. doi.org/10.1177%2F1557988320949379.

Truong M, Sharif MZ. We're in This Together: A Reflection on How Bioethics and Public Health Can Collectively Advance Scientific Efforts Towards Addressing Racism. Journal of Bioethical Inquiry, Jan 7, 2021. doi: 10.1007/s11673-020-10069-w. Online ahead of print. PMID: 33415592.

Vyas DA, Eisenstein LG, Jones DS. Hidden in Plain Sight - Reconsidering the Use of Race Correction in Clinical Algorithms. NEJM 2020, 383(9): 874-882. doi: 10.1056/NEJMms2004740. PMID: 32853499.

Wilson YY. Bioethics, Race, and Contempt. Journal of Bioethical Inquiry 2021, 7:1-10. online ahead of print. doi:10.1007/s11673-020-10070-3. PMID: 33415595.

Yearby R. Structural Racism and Health Disparities: Reconfiguring the Social Determinants of Health Framework to Include the Root Cause. The Journal of Law, Medicine & Ethics 2020, 48(3): 518-526. doi:10.1177/1073110520958876.

Zusevics KL. Public Health Genomics: A New Space for a Dialogue on Racism through Community Based Participatory Research. Public Health 2013, 127(11): 981-3. doi: 10.1016/j.puhe.2013.09.011. PMID: 24183926.


Health Humanities and Racism:

The field of health humanities also needs to wrestle with racism, while at the same time it attempts to help the health professions begin to reckon with racism:


Professionals’ Personal Accounts of Racism:

Among articles addressing racism in healthcare are personal accounts from healthcare professionals—both in practice and in training—for example:

  • Givens R. One of Us. NEJM 2021, 384(6): e18. doi: 10.1056/NEJMpv2100228. Epub 2021 Jan 27. PMID: 33503341.


Racism and Healthcare Education, Practices, and Research:

There are also calls to dismantle racism in healthcare professional education and clinical and research practices, for example:

  • Baily M. The Flexner Report: Standardizing Medical Students Through Region-, Gender-, and Race-Based Hierarchies, American Journal of Law & Medicine 2017, 43: 209-223 ; excerpted and available here on Race, Racism, and the Law on the WEB since 1995.


Publication Practices, Race, and Racism:

The practices and chosen content of healthcare and scientific journals are observed either to combat or to perpetuate racism:


Research on Health Effects of Racism:

These two articles present an interesting juxtaposition of evidence regarding the long-term effects of The Tuskegee Syphilis Study:

A research focus on the health-related effects of racism—within healthcare and society—can help correct ethically problematic false assumptions that health disparities are either due to race as a reified biological category, or purely due to socioeconomic differences. See, for example, research by Karen D. Lincoln and David R. Williams.

Urban Bioethics

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.


Research Ethics

Angal J, Peterson JM, Tobacco D, Elliott A. Ethics Review for a Multi-Site Project Involving Tribal Nations in the Northern PlainsJournal of Empirical Research on Human Research Ethics 2016, 11(2): 91-96.

Around Him D, Aguilar TA, Frederick A, et al. Tribal IRBs: A Framework for Understanding Research Oversight in American Indian and Alaska Native Communities. American Indian and Alaska Native Mental Health Research (Online) 2019, 26(2): 71-95.

Bakhireva LN, Nebeker C, Ossorio P, et al. Inclusion of American Indians and Alaskan Natives in Large National Studies: Ethical Considerations and Implications for Biospecimen Collection in the HEALthy Brain and Child Development Study. Adversity and Resilience Science 2020, 1:285-294.

Boyer BB, Dillard D, Woodahl E, et al. Ethical Issues in Developing Pharmacogenetic Research Partnerships American Indigenous CommunitiesClinical Pharmacology & Therapeutics 2011, 89(3): 343-345.

Claw KG, Lippert D, Bardill J, et al. Chaco Canyon Dig Unearths Ethical ConcernsHuman Biology 2017, 89(3): 177-180.  

Garrison N.  Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research. Science, Technology, & Human Values 2012, 38(2): 201-223.

Guedes C, Guimaraes S. Research Ethics and Indigenous Peoples: Repercussions of Returning Yanomami Blood SamplesDeveloping World Bioethics 2020, 20(4): 20-215.

Hindorff LA, Bonham VL, Brody LC, et al.  Prioritizing Diversity in Human Genomics ResearchNature Reviews Genetics 2017, 19(3): 175-185. 

Hiratsuka VY, Hahn MJ, Woodbury RB, et al. Alaska Native Genomic Research: Perspectives from Alaska Native Leaders, Federal Staff, and Biomedical Researchers. Genetics in Medicine 2020, 22(12): 1935-1943.  

Huckins C. For Marginalized Groups, Being Studied Can Be a Burden - Academics often research minority communities in the hope of helping them. But too much time under the microscope can cause its own harms, in Wired January 6, 2021.

James R, Tsosie R, Sahota P, et al. Exploring Pathways to Trust: A Tribal Perspective on Data SharingGenetics in Medicine 2014, 16:820-826.

James RD, West KM, Claw KG, et al. Responsible Research with Urban American Indians and Alaska Natives. American Journal of Public Health 2018, 108(12): 1613-1616.

Kelley A, Belcourt-Dittloff A, Belcourt C, Belcourt G. Research Ethics and Indigenous Communities. American Journal of Public Health 2013, 103(12):2146-2152.  

Lanzarotta T. Ethics in Retrospect: Biomedical R0esearch, Colonial Violence, and Iñupiat Sovereignty in the Alaskan ArcticSocial Studies of Science 2020, 50(5): 778-801.

Mashford-Pringle A, Pavagadhi K. Using OCAP and IQ as Frameworks to Address a History of Trauma in Indigenous Health Research. AMA Journal of Ethics 2020, 22(10): E868-873. 

Morton DJ, Proudfit J, Calac D, et al. Creating Research Capacity Through a Tribally Based Institutional Review Board. American Journal of Public Health 2013, 103(12): 2160-2164.

Office of Human Research Protections. Supporting Ethical Research Involving AI/AN Populations? August 26, 2021. Available are the archived video, slides, event summary report, and a list of resources.

Pacheco CM, Daley SM, Brown T, et al. Moving Forward: Breaking the Cycle of Mistrust Between American Indians and Researchers, American Journal of Public Health 2013, 103(12): 2152-2159. 10.2105/AJPH.2013.301480

Quigley D. A Review of Improved Ethical Practices in Environmental and Public Health Research: Case Examples from Native CommunitiesHealth Education & Behavior 2006, 33(2): 130-147.

Sharp RR, Foster MW. Community Involvement in the Ethical Review of Genetic Research: Lessons from American Indian and Alaska Native PopulationsEnvironmental Health Perspectives 2002, 110 (Suppl 2):145-8.

Trinidad SB, Fullerton SM, Ludman EJ, et al. Research Practice and Participant Preferences: The Growing Gulf. Science 2011, 331(6015): 287-88.

Weijer C. Protecting Communities in Research: Philosophical and Pragmatic ChallengesCambridge Quarterly of Healthcare Ethics 1999, 8: 501-513.

Weijer C, Emanual EJ. Protecting Communities in Biomedical Research. Science 2000, 289(5482): 1142-1144.

Winters, A. Trespass to Culture: The Bioethics of Indigenous Populations’ Informed Consent in Mainstream Genetic Research ParadigmsAmerican Indian Law Review 2016, 41(1): 231-251.
 

Clinical and Public Health Ethics

Caring for Native Americans. AMA Journal of Ethics 2020, 22(10): E831-905.

  • Kao AC. Health of the First Americans. AMA Journal of Ethics 2020, 22(10): E833-836.  Over 100 million people in the pre-Columbian Americas were Indigenous. In the 2010 US Census, 5.2 million people in the US identified as Indigenous. By this and other accounts, American Indians' and Alaska Natives' well-being has been imperiled for over 500 years.
  • Lucero JE, Roubideaux Y. Holding Space for All of Us. AMA Journal of Ethics 2020, 22(10): E882-887.  Concepts of “governance,” “trust,” and “culture” can help strengthen research partnerships, honor tribal sovereign authority, counter histories of opportunism, and recognize alternative ways of knowing.

Bond CJ, Singh D, Tyson S. Black Bodies and Bioethics: Debunking Mythologies of Benevolence and Beneficence in Contemporary Indigenous Health Research in Colonial Australia.  Journal of Bioethical Inquiry January 14, 2021.

Carrese J, Rhodes LA. Western Bioethics on the Navajo Reservation: Benefit or Harm? JAMA 1995, 274(10): 826-829.  

Fowler MD. Religion, Bioethics and Nursing Practice. Nursing Ethics 2009, 16(4): 393-405.

Kotalik J. Aboriginal Health Care and Bioethics: A Reflection on the Teaching of the Seven Grandfathers. The American Journal of Bioethics 2016, 16(5): 38-43; summarized in The Case for an Indigenous Bioethics Global Bioethics Blog, June 25, 2017.

Matthews R. Health Ethics and Indigenous Ethnocide. Bioethics 2019, 33(7): 827-834.

McNally M, Martin D. First Nations, Inuit and Métis Health: Considerations for Canadian Health Leaders in the Wake of the Truth and Reconciliation Commission of Canada ReportHealthcare Management Forum 2017, 30(2): 117-122.

McPherson DH, Rabb JD.  Further Reflections on the Seven Grandfathers: Bringing Native American Values to Bioethics. American Journal of Bioethics 2016, 16(5): 46-7.

Nortje N, Jones-Bonofiglio K, Sotomayor C. Exploring Values Among Three Cultures from a Global Bioethics Perspective. Global Bioethics 2021, 32(1): 1-14.

Endnotes

*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.