Given the long history of racial discrimination in the United States (and other countries), it is no surprise that medicine was impacted by these injustices. During a period of roughly three centuries, ten million Africans were brought to the Americas in the slave trade and approximately two million died in the voyage. In the brutal institution of slavery, families were torn apart, humans were treated as objects, and “as many as one-third of African slaves died within their first three years in the Americas.”[1] Emancipation in the 19th century brought partial freedom, but Jim Crow Laws, enforced segregation, lack of basic rights, cultural prejudices, and systemic patterns meant that racial discrimination continued for a long time, and continues today.
It is understandable then that medicine and healthcare would be impacted by such a history, and to this day we have not overcome the damage. The field of bioethics has only recently begun to give attention to racial disparities and privations in medical research, medical resources, and general healthcare. In an article in the Hastings Center Report, Matthew Hobberman noted that in 2001 the journal’s editor encouraged bioethicists to turn their attention to societal topics such as race. But in the fifteen years that followed, there were just a few articles, including two commentaries on Sickle Cell Anemia in the Black community. Similarly, in the American Journal of Bioethics, there were only four articles or essays focused on race and medicine in the same fifteen-year period.[2] For nearly half a century Beauchamp and Childress’ Principles of Biomedical Ethics has been a standard text in bioethics classrooms. But the topic of race did not make its way into the index until the fifth edition in 2001, and then only one and a half pages under the theme of transplant inequities.[3] This was in the middle of a 60-page chapter on justice, in the book that has heralded four cardinal principles of bioethics: autonomy, nonmaleficence, beneficence, and justice.
It has only been in the past few years, and especially after highly publicized cases of police brutality, that the themes of race and racism have entered the bioethics agendas. And yet there is still much work to be done to achieve racial justice. The historic patterns have created much suspicion in many African American communities, and past patterns of research and medical care have not yet been fully redressed. Thus, to fully comprehend the realities we need to examine both key historic events and contemporary patterns, and then turn to principles of human dignity and justice to guide us in medicine and health care.
With the outbreak of COVID-19, there have been some racial disparities regarding vaccination for the virus. “Across the 36 states for which a total vaccination rate could be calculated by race/ethnicity as of July 11, 2022, 87% of Asian, 67% of Hispanic, and 64% of White people had received at least one COVID-19 vaccine dose, higher than the rate for Black people (59%).”[4] Transportation and proximity to vaccination sites clearly played a role in this disparity, but significantly the rate among Blacks was lower than Hispanics, who frequently experienced the same systemic access factors. Why the difference? Without a doubt there are key historical events and patterns that have created mistrust of medicine and healthcare in many African American communities. These historic narratives engendered suspicion of major medical and healthcare institutions.
One of the most notorious events was the “Tuskegee Study of Untreated Syphilis in the Negro Male” (as it was originally called) from 1932 to 1972 in Alabama. The U.S. Public Health Service was attempting to document the natural patterns of syphilis in infected males. Nearly 400 Black men with syphilis and 200 men without were involved in the study with a promise of free meals, free medical exams, and burial insurance. However, there were two primary ethical abuses in the study. First, there was not authentic informed consent, and even more egregious was that in 1943 penicillin became available as a treatment for syphilis. Those infected were never granted this medical treatment during the period of the study. Finally, after information about the study began to surface, a panel advised stopping the research.
The Department of Health, Education and Welfare (HEW) eventually set up a process to provide medical care for the survivors of the study, and a few years later it was extended to their families. A class action lawsuit eventually resulted in a ten million dollar out-of-court settlement, and in 1997 President Clinton issued an official governmental apology. Despite the amends the damage was done, both in terms of medical neglect and harm, as well as mistrust in Black communities.[5]
A second historic event engendering mistrust of American medicine was the case of Henrietta Lacks. In 1951 at Johns Hopkins University a malignant tumor was discovered in the cervix of the young African American mother. She began radium treatment for the cancer and in the process, “a sample of her cancer cells retrieved during a biopsy were sent to Dr. George Gey’s nearby tissue lab. For years, Dr. Gey, a prominent cancer and virus researcher, had been collecting cells from all patients. . . . What Dr. Gey would soon discover was that Mrs. Lacks’ cells were unlike any of the others he had ever seen: where other cells would die, Mrs. Lacks' cells doubled every 20 to 24 hours.”[6] The unusual cells, nicknamed HeLa (the first letters of her first and last name) have been “used to study the effects of toxins, drugs, hormones and viruses on the growth of cancer cells without experimenting on humans. They have been used to test the effects of radiation and poisons, to study the human genome, to learn more about how viruses work, and played a crucial role in the development of the polio and COVID-19 vaccines.”[7] Henrietta died a few months after the tumor was discovered, but her cells continue to make significant contributions to the world of medicine.
The use of biospecimens has and will continue to play a significant role in medical advances, but it raises numerous ethical issues, which were present in the Henrietta Lacks case. Among them were and are informed consent, large-scale data sharing, confidentiality, commercialization, access to research results, and the ability to withdrawl. And as one author in an NIH publication put it, “Although the original researchers gave the cells away to anyone who asked, the cell line and downstream discoveries became extremely lucrative—while the Lacks family received no financial benefits and continued to live in poverty with limited access to health care.”[8] Most Americans became aware of the abuses through Rebecca Skloot’s, The Immortal Life of Henrietta Lacks (2010), which not only tells the remarkable story but addresses the ethical issues, including racism.[9] It was followed by a movie with the same title, facilitated by and starring Oprah Winfrey. But more recently, Ron Lacks, the oldest grandson of Henrietta, has published his own version of the story, taking issue with numerous portrayals in Skloot’s book. He objects to the depiction of the Lacks’ family being a poor, ignorant, uneducated family and Henrietta being illiterate. He believes that Skloot’s own work was driven by a thirst to make money and in the process of her interviews tore the Lacks family apart. At the root of it all—in the book/movie portrayals, in John Hopkins University’s perceived culpability, and in the continual use of the cells without compensation to the family—Ron believes there is racism.[10] His own mistrust of medicine, science, healthcare, and his family’s portrayals in the press and Hollywood, is palpable; and that distrust is frequent in the African American community. Fortunately in the summer of 2023, more than 70 years after the cells were taken from Henrietta’s body without her or the family’s knowledge, the family reached a settlement with a biotech company that they say had made billions of dollars from her cells.[11]
A third historic experience that has engendered mistrust in medicine and healthcare stems from the history of segregated medicine in the United States (especially in the South), with the subsequent disparity of treatment. During slavery Blacks were provided healthcare with false assumptions about race, but also with the primary motive of preserving an economic asset, seeing enslaved persons as objects, similar to land or animals. There was a common belief during and following slavery among medical experts that “if blacks had poorer health outcomes than whites, the differences must be due to inherent racial weaknesses, not disparities in economic circumstance.”[12] Race itself was deemed a physiological reality that influenced medical outcomes. Therefore, “in the 1700s, when yellow fever rates in the U.S. were higher among whites than blacks, physicians assumed that racial differences in immunity were the cause. In fact, those blacks who were immune had most likely contracted the disease as children in the countries from which they were enslaved.”[13] This led to Blacks not being treated in a later outbreak in Philadelphia, with the result that many died.
Emancipation held out hope for improved medical care, but with the emergence of Jim Crow laws segregated medicine became the norm in many places. Prior to the Civil Rights Act of 1964 most hospitals in the South excluded Black patients and Black doctors. Thus, the “separate but equal” myth led to great inequalities in medicine and healthcare, and its impact has not been overcome to this day. Moreover, this history, including the cases above, is not just known by educated Blacks, but is part of an oral narrative prevalent throughout the African American community. This forms the lens through which medicine, healthcare and bioethics are viewed, leading to both mistrust and a continuation of disparities.
In analyzing the current situation, it is helpful to examine both Black perceptions regarding health disparities as well as to look at the data. Following that, it is useful to explore why disparities exist. And obviously, the mistrust of medicine and healthcare we have just analyzed plays a significant role in both perception as well as the contemporary realities.
According to a Pew research study, “Black Americans offer a mixed assessment of the progress that have been made improving health outcomes for Black Americans: 47% say health outcomes for Black people have gotten better over the last twenty years, while 31% say they’ve stayed about the same and 20% think they’ve gotten worse.”[14] The main reason that Blacks feel progress has not been made is the lack of access to quality medical care. Along with the access issue, they also point to other factors such as: living near environmental volatilities, jobs with risks to healthcare, and healthcare providers not giving advanced care. Sixty-one percent of Black adults give positive ratings to recent medical experiences, but 40% believe they have “had to speak up to receive proper medical care,” though that is just about the same as all U.S. adults.[15] Seventy-one percent of Black women between the ages of 18 to 49 report at least one negative healthcare experience in the past, which is substantially higher than the reports of Black women over 50.
As we look at specific data of healthcare and medical treatments, it’s helpful to keep in mind the overall population in the United States by race/ethnicity: 58% White, 19% Hispanic, 12% Black, 6% Asian, and 5% other.[16] Overall Blacks and Hispanics fared worse than Whites and Asians in a broad range of health and healthcare measures in 2021, with some anomalies in the mix:
When it comes to interpreting the kind of data just explored, there are varying views of causality. First, some may be prone to look to biological/genetic factors to account for healthcare disparities. But it needs to be noted that “the genome between socially constructed racial groups is 99.5%–99.9% identical; the 0.1%–0.5% variation between any two unrelated individuals is greatest between individuals in the same racial group; and there are no identifiable racial genomic clusters.”[17] Having said that, we do know that Sickle Cell disease is far more prevalent in African Americans than other ethnic groups in the United States. It is a congenital disease caused by genetic inheritance, and “researchers believe that this could be because SCD evolved in human populations living where malaria is common, to help protect against the disease.”[18] Worldwide, Sickle Cell disease is most common in the southern hemisphere where malaria is more common. However, this disease is unusual in terms of genetic factors playing a medical outcome role among given racial/ethnic groups, and in this case there is a historic medical reason for it.
Second, some may look to cultural patterns and practices to account for medical and health differentials. For example, obesity raises one’s risk of type 2 diabetes, stroke, and heart disease, and obesity is caused by a combination of factors, including eating patterns. The obesity rate among adults by race and ethnicity is as follows: White 32%, Black 43%, Hispanic 37%, and Asian 12%. Eating patterns are conditioned by choices that individuals make but also by cultural patterns of food and eating. Smoking is related to numerous medical conditions such as cancer, heart disease, stroke, lung disease, diabetes, and chronic obstructive pulmonary disease (COPD). Here the smoking patterns might not at first glance appear to be highly significant for medical differentials, as the smoking rates are: 14% White, 16% Black, 11% Hispanic, and 6% Asian. It is significant to note, however, that rates of death by cancer, including lung cancer, are much lower among Hispanics and Asians than among Whites and Blacks.[19] Damon Tweedy, in his insightful book Black Man in a White Coat, acknowledges that personal choices, often intersecting with cultural influences, have a significant impact on health patterns in the Black community: “As a general rule, surveys have indicated that Black people are more accepting of—and in some cases indicate a preference for—heavier body types. Skinniness is more likely to be seen as a sign of illness—cancer, AIDS, crack addiction, starving African children—and as a result, lifestyle changes aimed at becoming slender are more likely to be viewed with skepticism than enthusiasm.”[20]
A third factor in medical and health differentials is poverty levels that then impact access to quality healthcare. The poverty rates by race and ethnicity in the United States are as follows: Black 19.5%, Hispanic 17.1%, White 8.2%, and Asian 8.1%.[21] This clearly is a factor in medical and health outcomes as evidenced by the following data:
Clearly one of the factors in Blacks experiencing health and medical disparities is economic. As Patrick Smith notes, a “significant indicator of health outcomes is based on zip codes,”[23] and thus, “when crises emerge, the long-term health and economic impact for those who survive is often felt hardest by those who already experience disparities in wealth, overall health outcomes and in access to and benfits of health care.”[24] This then is a more structural issue that may call for redress to achieve justice in medicine and healthcare.
A fourth factor in racial and ethnic disparities is racism, which can entail personal actions and attitudes as well as systemic or structural factors that impede justice. In exploring racial biases and injustices, it is helpful to differentiate explicit biases from implicit ones. Explicit biases are the kinds demonstrated in the first section where we explored historic events that were overt and unambiguous, such as segregated medical care. Today, many medical/healthcare disparities are linked to implicit biases in which medical and health personnel are unaware of their own attitudes, actions, and compliances with patterns that work against adequate health for all persons and racial/ethnic groups. For example, a number of research studies have found that numerous “health care providers implicitly hold associations that African American patients are less compliant and less cooperative in medical settings than White patients.”[25] In one study the researchers expected “that physicians would be less likely to prescribe a higher dose of opioids to Black patients who exhibited challenging behaviors; in fact, physicians were more likely to prescribe higher doses of opioids to challenging Black patients, yet slightly less likely to do so to white patients exhibiting the same behavior.”[26] We have already noted that whites have higher rates of cancer, but more Blacks die of cancer than whites—a differential that may be related to differences in extensive treatments because of economic or racial factors. Similarly, we noted that Black women have higher rates of mammograms than whites, yet more Black women die of breast cancer than white women.
As we assess the differing interpretations of the data, not all disparities can be attributed to racism, but clearly it does play a role in medical and healthcare outcomes. Moreover, we cannot forget the long sad history of racial injustices that has engendered distrust of health/medical institutions in the Black community.
As we seek to bring Christian ethical paradigms to the racial disparities, there are two commitments that are most salient: human dignity and justice. Human dignity flows from creation in the image of God (Gen 1:26–27; 9:6; James 3:9). This means that all human beings, whatever their race, ethnicity, nationality, status, or actions, have an intrinsic value that is to be guarded in all spheres of life. Human dignity does not negate the effects of human sin from the fall, nor does it nullify human responsibility. But it does mean that medical personnel have an obligation to treat every patient with respect, to examine their own intrinsic biases, and to address societal and cultural patterns that undermine healthcare for those who are left behind due to race or ethnicity. Creation in God’s image means a worth and value for all peoples in all phases of life, and a dignity that is not dependent upon human functionalities, such as reason or the ability to relate well to others. Thus we not only affirm human value at the beginning of life or the end of life, but throughout the lives of human beings.[27] In addressing racial disparities in medicine and healthcare human dignity means that it is imperative to avoid paternalism, in which human dignity is undermined by treating some groups of humans as weak, child-like, ill-informed, challenging, or unable to make good judgments.
The second ethical commitment that is pertinent to racial disparities in medicine and healthcare is justice. Justice is about what is owed human beings in the various spheres of life and society. As the Psalmist put it, “The Lord secures justice for the poor and upholds the cause of the needy” (Ps 140:12, NIV); and as Jesus describing an action of justice says, “Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me” (Matt 25:40). Justice flows from human dignity rooted in the image of God and, while not the same as love, cannot be divorced from a commitment to love. As philosopher Nicholas Wolterstorff puts it, “Love for another seeks to secure that she be treated justly by oneself and others—that her rights be honored, that she be treated in a way that befits her worth.”[28]
The implementation of justice in medicine/healthcare, like all parts of society, is not easy, for frequently ideological commitments lead to different strategies of implementation. Moreover, there are varying definitions of justice that lead to determinations of what is owed people: merit, equality, and need. Merit justice says that what is owed people depends on their actions, with an emphasis on personal responsibility. Egalitarian justice has two forms: equal outcomes and equal access. Equal outcomes has historically led to problematic strategies that tend then to undermine justice in its attempts to procure justice, while equal access emphasizes that strategies must be in place to ensure that everyone has a fair access to the goods of society. Need justice emphasizes that equal access and merit are sometimes inadequate due to past injustices and current disparities. It will then call for strategies, both personal and structural, that seek to redress the past and present patterns to grant what is due persons and groups.
I personally think that a biblical/theological case can be made for all three definitions, which may imply that different definitions are needed for different spheres of life and different contexts or situations.[29] As applied to medicine and healthcare this means we should emphasize personal responsibility in healthcare (the merit side) along with an equal access to medicine and healthcare. Because of the past wrongs that have led to mistrust and patterns that still fail to grant what is due, there will need to be structural forms of redress that empower, engender trust, and make possible the personal responsibility side in healthcare.
With this ethical framework in place, we then must seek the wisest strategies for implementation. It is here that some of the greatest conflicts occur, because politicized and ideological commitments often preclude wise assessment of how we best guard human dignity and implement justice. There is always a difference between our ethical principles and our strategies for implementing them. Our Christian principles are absolute and our strategies (the wisest course of action for implementing our principles) are relative. Unfortunately, we live in a time when principles have been relativized and strategies absolutized.
Nonetheless, I believe Damon Tweedy offers wise counsel in describing three forms of medical/healthcare problems that then call for three forms of strategy.[30] First are system-based disparities for people with less access to medical care and insurance, which then calls for structural modes of redress. Second is the relationship of doctors to patients and vice versa, calling for patience, care, and addressing one’s own implicit biases. One study, for example, spanning 23 years in Florida, found that mortality rates for Black newborns was cut in half when Black physicians cared for Black babies.[31] This demonstrates that the kind of relationship and care shown plays a significant factor in medical outcomes. Third, says Tweedy, who is himself a Black physician specializing in psychiatry, are the various unhealthy lifestyle behaviors that are found in some Black communities. All of these together need to be addressed to overcome the past suspicions and the current disparities.
As Christians engaged with medicine and healthcare (and to some degree that includes all of us), we must recognize the sad history of racism in our nation’s past and disparities that continue to exist. We bring to that past and present enduring ethical paradigms of human dignity and justice. We then seek to find the wisest courses of action to redress the past and present patterns, with the same commitment of Amos the prophet, “Let justice roll on like a river, righteousness like a never-failing stream” (Amos 5:24).
[1] Jemar Tisby, The Color of Compromise: The Truth About the American Church’s Complicity in Racism (Grand Rapids, MI: Zondervan, 2019), 31.
[2] John Hoberman, “Why Bioethics Has a Race Problem,” Hastings Center Report 46, no. 2 (2016): 12–18.
[3] Tom Beauchamp and James Childress, Principles of Biomedical Ethics, 5th ed. (New York: Oxford University Press, 2001), 237–39.
[4] Nambi Ndugga, Layota Hill, Samanta Artiga, and Sweta Haldar, “Latest Data on COVID-19 Vaccinations by Race and Identity,” Kaiser Family Foundation, July 14, 2022, https://www.kff.org/coronavirus-covid-19/issue-brief/latest-data-on-covid-19-vaccinations-by-race-ethnicity/.
[5] For a helpful overview of the Tuskegee story see James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment, New and Expanded Edition (New York: The Free Press, 1993).
[6] “The Legacy of Henrietta Lacks,” Johns Hopkins Medicine, accessed April 12, 2023, https://www.hopkinsmedicine.org/henriettalacks/.
[7] “The Legacy of Henrietta Lacks,” Johns Hopkins Medicine.
[8] Laura Beskow, “Lessons from HeLa Cells: The Ethics and Policy of Biospecimens,” NIH National Library of Medicine (2016), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5072843/.
[9] Rebecca Skloot, The Immortal Life of Henrietta Lacks (New York: Random House, 2010).
[10] Ron Lacks, Henrietta Lacks, The Untold Story (Copyright Ron Lacks, 2020).
[11] Lea Skene and Sarah Brumfield, “Henrietta Lacks’ Family Settles Lawsuit with a Biotech Company That Used Her Cells without Consent,” Associated Press, August 1, 2023, https://apnews.com/article/henrietta-lacks-hela-cells-thermo-fisher-scientific-bfba4a6c10396efa34c9b79a544f0729.
[12] Amy Roeder, “Understanding Slavery’s Legacy in Health and Medicine,” Harvard T.H. Chan School of Public Health, May 8, 2017, https://www.hsph.harvard.edu/news/features/understanding-slavery-legacy-in-health-medicine/.
[13] Roeder, “Understanding Slavery’s Legacy in Health and Medicine.”
[14] Cary Funk, “Black Americans’ Views About Health Disparities, Experiences with Health Care,” Pew Research Center, April 7, 2022, https://www.pewresearch.org/science/2022/04/07/black-americans-views-about-health-disparities-experiences-with-health-care/.
[15] Funk, “Black Americans’ Views About Health Disparities, Experiences with Health Care.”
[16] This and the following data is from Latoya Hill, Nambi Ndagga, and Samantha Artiga, “Key Data on Health and Health Care by Race and Ethnicity,” Kaiser Family Foundation, March 15, 2023, https://www.kff.org/racial-equity-and-health-policy/report/key-data-on-health-and-health-care-by-race-and-ethnicity/.
[17] Ruqaiijah Yearby, “Race Based Medicine, Colorblind Disease: How Racism in Medicine Harms Us All,” The American Journal of Bioethics 21, no. 2 (2021): 19–27, https://doi.org/10.1080/15265161.2020.1851811.
[18] Jennifer Huizen, “What to Know About Sickle Cell Anemia in African Americans,” Medical News Today, February 2, 2021, https://www.medicalnewstoday.com/articles/african-american-anemia.
[19] Hill, Ndagga, and Artiga, “Key Data on Health and Health Care by Race and Ethnicity.”
[20] Damon Tweedy, Black Man in a While Coat: A Doctor’s Reflections on Race and Medicine (New York: Picadorrusa, 2015), 220.
[21] Statista Research Department, “Poverty Rate in the United States by Ethnic Group 2021,” Statista, September 30, 2022, https://www.statista.com/statistics/200476/us-poverty-rate-by-ethnic-group/.
[22] Hill, Ndagga. and Artiga, “Key Data on Health and Health Care by Race and Ethnicity.”
[23] Patrick Smith, “Why are Questions of Social Justice so Important to the Work of Bioethics,” Kenan Institute for Ethics, Duke University, https://kenan.ethics.duke.edu/wp-content/uploads/2020/06/Patrick-Smith_Good-Question.pdf.
[24] Patrick Smith, “What Next? Thinking Ethically About Navigating COVID19—A Focus on the Margins,” Kenan Institute for Ethics, Duke University, March 23, 2020, https://kenan.ethics.duke.edu/what-next-thinking-ethically-about-mitigating-covid-19-a-focus-on-the-margins/.
[25] Colin Zestcott, Irene Blair and Jeff Stone, “Examining the Presence, Consequences, and Reduction of Implicit Bias in Health Care: A Narrative Review,” NIH National Library of Medicine, July 1, 2016, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4990077/.
[26] Chloe FitzGerald and Samia Hurst, “Implicit Bias in Healthcare Professionals: A Systematic Review,” BMC Medical Ethics 18, no. 19 (2017): https://doi.org/10.1186/s12910-017-0179-8.
[27] For further exploration of human dignity rooted in the image of God and its application to both racism and bioethics, see Dennis P Hollinger, Creation and Christian Ethics: Understanding God Designs for Humanity and the World (Grand Rapids, MI: Baker Academic, 2023), 69–94.
[28] Nicholas Wolterstorff, Justice in Love (Grand Rapids, MI: Eerdmans, 2011), 93.
[29] For more detailed analysis on these definitions of justice, see Dennis P. Hollinger, Choosing the Good: Christian Ethics in a Complex World (Grand Rapids, MI: Baker Academic, 2002), 216–37.
[30] Tweedy, Black Man in a White Coat, 236–37.
[31] Brad N. Greenwood, Rachel Harderman, Laura Huang, and Aaron Sojourner, “Physician-Patient Racial Concordance and Disparities in Birthing Mortality for Newborns,” PNAS 117, no. 35 (2020): 21,194–200, https://doi.org/10.1073/pnas.1913405117.
Dennis Hollinger, “Race, Medicine, and Healthcare: A Christian Perspective,” Dignitas 30, no. 2 (2023): 4–9, www.cbhd.org/dignitas-articles/race-medicine-and-healthcare-a-christian-ethics-perspective.
