Sarah Berry // Bioethics and black history are intertwined in the U.S. In 1972, a news story broke about a four-decade medical experiment in rural Tuskegee, Alabama that studied the untreated effects of syphilis specifically in black males. This study, funded and administered by the federal government, made headline news and, after an investigation, spurred the U.S. to adopt a code of uniform medical ethics. The men’s preventable suffering from advanced stages of syphilis for decades after an effective remedy (antibiotics) had become the standard of care was a national wake-up call. The expose ushered in an era of ethical oversight of medical studies and healthcare protocols. But Tuskegee was not shocking news to all Americans.
[Trigger warning: medical harms in the content ahead.]
Trust in medicine by people of African descent had been troubled for centuries, spurred by involuntary testing and abuse of enslaved people by the white medical establishment, continuing through the 20th century. Cautionary stories were passed down within black communities for generations (Washington 16). This well-founded fear led to a fraught relationship between African Americans and traditionally white-dominated medicine, such as Henrietta Lacks who in the 1950s resorted to the Johns Hopkins free clinic only when her cancer became advanced and painful (Lacks 25).
Since the first enslaved Africans were brought to Virginia in 1619, they were nonconsenting medical subjects. White doctors tested heat stroke by burying enslaved men in pits with burning coals and measuring the temperature at which they passed out (Washington 53-54). Enslaved teens and women with torn birth canals were sutured over and over to perfect the technique without the readily available anesthesia (Schwartz 237). What enslavers believed made Africans ideal captive laborers also made them convenient medical test subjects: enslavers’ claim that African bodies felt less pain, a claim legitimized by the medical science of the era. This scientific myth persists in the present, with well-documented undertreatment of pain in people of color. A 2007 study published in Journal of the National Medical Association, an African American medical organization, shows that physicians are twice as likely to underestimate pain in black patients compared to other racial and ethnic groups.[i]
Given this long history of medical racism, in a surprising reversal, a study published this month in Nature Human Behaviour found that African American test subjects felt more pain than “White” and “Hispanic” subjects. In “Neural and Sociocultural Mediators of Ethnic Differences in Pain,” Elizabeth Losin and colleagues also found that trust of the medical establishment and history of discrimination pushed pain ratings up in African Americans compared with White and Hispanic Americans.
At first glance, this study seems to rectify a number of longstanding patterns of medical racism. First and foremost, it reverses an enduring biased assumption about black bodies and pain. It also, importantly, acknowledges social causes of embodied pain. Informed consent was secured from all test subjects, reflecting the ethical standards of the present day. But given the inseparability of race and medical research throughout U.S. history, we need to think carefully about the effects of medical studies of race in the present.
In order to critically read this medical study, we must first define keywords.
The authors set out to test the Neurological Pain Signature (a measurable response to painful stimuli) in a specific area of the brain among three test groups: African Americans, Hispanics, and non-Hispanic White Americans. As with most medical studies dealing with race, the authors refer to these three group labels collectively as “ethnicity.”[ii]
Medical studies classify people using federal government terms for race and ethnicity, and the current terms are those established in 1978 by the Office of Management and Budget in Directive 15 (CDC 1993). This initiative aimed to standardize collection of vital statistics and health data while distinguishing among populations of different races and ethnicities. Federal agencies use data from birth and death certificates, morbidity and mortality reports, and population census reporting. Several factors complicate a standardization effort: how to code people of multiple racial origins; self-reporting versus proxy reporting (i.e., assigning a race or ethnicity based on the proxy’s perceptions of another person’s race); whether to cite an infant’s race based on the mother’s race or on both parents’ race (both tactics have been used; currently, the mother’s race defines the child’s race); and changes over time and region in definitions and terms for racial and ethnic categories. All of these coding challenges reflect the lived complexities of U.S. American racial identity and continuous changes in terms over time.
COLOR, CONTINENT, OR CULTURE?
Categories for race and ethnicity as defined by the U.S. government, created and replicated in medical studies, reflect colonial history and the point of view of colonizers. This bias is reflected in the motley, inconsistent criteria for assigning race: color, continent, and/or culture, according to different scientific systems and political parties that sought to classify humans in the seventeenth and eighteenth centuries. Today, the U.S. government recognizes five race categories: American Indian or Alaska Native; Asian; Black or African American; Native Hawaiian or Other Pacific Islander; and White (CDC 2015).
Within these five categories, membership criteria differ. For example, for American Indian or Alaska Native, two criteria are required: a specific continental origin (“original peoples of North and South America”) and some form of cultural participation (“maintains tribal affiliation or community attachment”). For Asian, a massive geographical area is the only criterion, regardless of the vast diversity of ethnicities and nations included: “any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam” (CDC 2015).
The criteria for the category “Black or African American” reflects both colonial history and the history of slavery; each powered the projects of science and medicine. Not coincidentally, it is the only category naming color as a criterion—as well as terms dating to slavery: “A person having origins in any of the black racial groups of Africa. Terms such as ‘Haitian’ or ‘Negro’ can be used in addition to ‘Black or African American’” (CDC 2015). Race terms such as “black” and “Negro” were fundamental to maintaining the system of chattel slavery and afterward, segregation. Early race terminology followed animal husbandry (for example, the terms “negro,” “mulatto,” and “quadroon”) and English law (the “one-drop rule” stated that anyone with an African ancestor, no matter how distant, was “black.” Spanish law, by contrast, recognized a greater range of racial identifications).
In tandem with “Black or African American,” the race category “White” places the emphasis on color in the category name, but omits color from the criteria, reflecting a perception that the dominant race is not a phenotypically-marked race at all, and therefore not subjectable to the same assignments of social value as “black,” which becomes reductively synonymous with “race.” At the same time, region of origin overlaps between African American and White, which is defined as “a person having origins in any of the original peoples of Europe, the Middle East, or North Africa.” The contrast of color terms only for “Black” and “White,” but not for the other three race categories recognized for data collection, reflects the binary by which legal and social personhood was defined in the U.S. from its earliest colonial government in Virginia forward through independent nationhood.[iii]
Stickiest of all, perhaps, is the question of how race and ethnicity relate to each other in health data collection. What ethnicity is signified by the label “Hispanic,” for example? In many communities, the broad term for a great number of groups with some degree of Spanish heritage is no longer Hispanic; it has been replaced with LatinX. The term “Hispanic” reflects the 1978 start date of “rules for the classification of persons into racial or ethnic categories”—an initiative with enormous potential, at the time, for more meaningful health and population data enabling the government to identify the needs of vulnerable populations. This recognition of an ethnic category has improved population health science and its benefits in the U.S. over the past 50 years.
However, the terminology hasn’t kept pace with cultural change. People of Spanish-language and –culture affiliation diversified this term through the solidarity movements of the 1970s and 1980s. For example, Mexican-American people selected the term Chicano/a for self-identification. The history of Spanish and indigenous cultural heritage blending in North, Central, and South America and the Caribbean is so complex and variable, a common origin in continental Spain is virtually meaningless, yet that is what “Hispanic” signifies. The U.S. government specifies “Hispanic” as “A person of Cuban, Mexican, Puerto Rican, Cuban, South or Central American, or other Spanish culture or origin, regardless of race. The term, ‘Spanish origin,’ can be used in addition to ‘Hispanic or Latino’” (emphasis added).[iv] One huge question arises: Are medical studies that compare racial and ethnic groups then comparing apples to oranges?
What is really measured in studies that group subjects according to race and ethnicity—and that further subsume all race and ethnicity designations under the umbrella of “ethnicity”? The above foray into criteria for race and ethnicity, and the uneven relationship between the two categories “race” and “ethnicity,” makes this question impossible to answer from a human diversity standpoint. Perhaps these studies are measuring the power of race and ethnicity labels in the U.S. more than biological facts about individual bodies.
Although the term “African American” encompasses a geographical region (continent) and a politically-drawn region (nation) on another continent, it does not signal the vast diversity of ethnicities, heritages, and cultural identities of Americans of African descent. The prioritization of race over ethnicity in U.S. history hides a lot of diversity. Just as “African American” does not comprise one single ethnicity, neither does “Non-Hispanic White.” Medical tendencies to lump race and ethnicity categories under the umbrella “ethnicity” further obscure the real biopolitical marker under scrutiny, race, while rendering ethnicity from a cultural and anthropological standpoint meaningless.
The government and medical researchers make a tradeoff: for “clean” data coming from standardized data collection, we gain valuable population health information, including knowledge about health disparities. But we sacrifice diversity, nuance, and self-determination by imposing dominant-group labels. This problem also raises the question of whether the study’s findings are still scientifically valid if race (or ethnicity) terms change in the future, as they have for African Americans and LatinX people. If terms and criteria change, then groups of subjects are composed differently; the statistical significance of group comparison then alters.
SOCIAL V. SCIENTIFIC MEANING
The relationship between a category with social meaning such as “African American” and a category with scientific meaning such as Neurological Pain Signature is empirically difficult to pinpoint. While objective facts about racial differences in biology are elusive, powerful narratives about biological race proliferate; they are made and remade continuously, according to cultural contexts and power differentials in a stratified society. Dorothy Roberts asserts, “As evidence contesting the biological basis of race emerges [i.e., with the 2001 discovery after completing the human genome that all humans are 99.9% genetically the same], scientists have reconfigured race without abandoning it. What links racial science from one generation to the next is the quest to update the theories and methods for dividing human beings into a handful of groups to provide a biological explanation for their differences—from health outcomes to intelligence to incarceration rates” (26). Race is a social and political category, as the above discussion of race and ethnicity illustrates, rather than a purely biological one, but, crucially, the effects of race are biological. That is, “race has biological effects” on health and illness, and these effects are “due to stress-related outcomes of reduced access to valued social goods, such as employment, promotion, and housing stock. The effect [of a heart attack] was biological, not the origins” (Ehlers and Hinkson xix).
Losin’s study investigates and concludes that there is a racial basis for difference in neurological response to pain. A key finding of the study is that African American participants’ brains showed higher pain levels than Hispanic and White subjects using the same test stimulus.
This study also finds a biological effect of social experience. Pain is even more intense, the greater the lifetime experiences of discrimination and the lower the trust levels reported by the African American group compared with the other groups. The study accounts for social experiences registering in health effects on the body.
This study reports all of its statistical processes and study design so that it can be replicated. It is published in an open-access venue (no university library membership needed). Its jargon, calculations, charts, and graphs look impressive to the layperson. It promises a quantifiable basis for promoting “interventions geared towards reducing discrimination and increasing clinician trust[, which] may be promising ways to mitigate ethnic disparities in pain” (Losin et al 3).
The study design is typical for pain research, but this standard for medical research may skew results. Specifically, the test tool for inducing pain is a wand heated up to precise temperatures by a “White male in his mid-30s” and placed on the participant’s forearm, followed by a few 7-minute stints of immobility in the cramped, loud MRI machine. This testing method could be triggering for any participant, but especially activate stress from past personal experiences with racially-fraught medical encounters. Additionally, it would amplify shared distrust of medical encounters in communities of color.
What happens if we look critically at who is designing, executing, and publishing this medical study, for whom, and for what purpose?
Most readers would agree that the authors’ goal to “increase[e] clinician trust” and to “mitigate ethnic disparities in pain” are both prosocial aims. But who benefits from this study? The results are not news to people of color or any other medically-oppressed group or their allies. So by default, it is aimed at people who are unaware or unconvinced that there are racial and ethnic differences in pain response to physical stimuli. It could also be aimed at the significant portion of clinicians who believe that African Americans register lower pain levels compared to whites (see for example, the studies by S. Trawalter and K.M. Hoffman cited in Losin et al.). These readers may be persuaded ideologically, but not scientifically (the sample size is small; fMRI study results are difficult to replicate). When we place this study in its historical lineage, though, there’s a deeper effect that reinforces discrimination.
Steven Epstein discusses the legacy of nineteenth-century race medicine on current medical research, noting that “medical arguments [about racial differences in health] were not just passive vehicles for the transmission of racist ideas. Through a specification of difference as rooted in biology, and by means of the cultural authority invested in the medical and scientific professions, physicians and researchers actively reshaped social understandings of race” (37-38). The 2020 study is also explicitly attempting to reshape social understandings of race. The problem is that changing the valence (more pain, not less pain, is experienced) preserves the authority of medicine to root race in the body, perpetuating entrenched bases of political and social discrimination.
What would more effectively address social disparities of health, including pain and stress-related disorders that permeate even medical encounters? “Neural and Sociocultural Mediators of Ethnic Differences in Pain” used public funds (NIH grants) and took research materials, human labor, and time to execute and publish. Yet we already have clear and extremely well-established knowledge from population health about health disparities, in which African Americans have the highest rates of deaths from heart disease, and the highest rates of hypertension and obesity nationwide.[v] We already know that wealth and social status[vi]—as well as the size of the gaps between income and status levels in a given society around the globe[vii]—predict both health and lifespan quite accurately. ZIP codes in the U.S. accurately predict health and longevity, and race is distributed predictably among ZIP codes due to segregation, income disparities, disproportionate poverty rates among all populations of marginalized status, and redlining. Disparities in healthcare access are also plainly and simply linked to income/employment disparities in the U.S. for-profit insurance system. Given these clear research results, with huge data sets and decades of iterations (here is where the federal data collection is valuable, even if racial and ethnic terms need some reform), African American pain may be best addressed by directing all research money, human labor, and publication space to making and assessing structural and cultural changes in the U.S., from economic equality to universal healthcare to equal representation of races and ethnicities in healthcare delivery and research. Simply put, all other efforts are preserving structural inequality.
The authority that science wields in U.S. culture is disproportionate to its epistemological foundation. Medical research uses statistical analyses dazzling in their complexity and variety, but what they all have in common is suggesting that a relationship between variables is likely not a coincidence. The p-value is a probability, or a chance. The statistical analyses run on data that are collected by a machine like an MRI are advanced efforts to eliminate human bias in determining likely relationships. With race and ethnicity so fluid and context-dependent, the human bias saturates any study that places them as the central variables—it pre-skews statistical analysis. What is arguably more harmful in a U.S. context, however, is that in the fraught history of medical racism impacting the present, technological data imaging and statistical analyses signal a disbelief, an unwillingness to accept pain self-reports from people with pain. While certainly not the intention of this study, that’s the effect. And for people who have survived medical encounters with clinician disbelief of pain levels, a common experience for women and people of color, this disbelief and reliance on machines and mathematics compounds the biopsychosocial effects of racism that good-intentioned studies would like to remedy.
What can be done? Privilege self-reporting. Listen closely to testimony of the lived experience of race in America. An increasing number of authors are taking their time and talent to describe, in print and in speaking events, the current lived effects of racism. These include Roxane Gay (Hunger), Tressie McMillan-Cottom (Thick), Camille Dungy (Guidebook to Relative Strangers), Kiese Laymon (Heavy and How to Slowly Kill Yourself and Others in America), Ta-Nehisi Coates (Between the World and Me), Jesmyn Ward (Men We Reaped), Michelle Obama (Becoming), Tiana Clark (I Can’t Talk About the Trees Without the Blood), and Patrisse Khan-Cullors (When They Call You a Terrorist), to name just a few. To counter narratives of biological race, people who do not experience racial discrimination can witness these self-reports. This could provide a way in to interpersonal witnessing, and eventually reshape medical research so that it doesn’t reinforce historical problems and perpetuate disparities.
The most accurate tool that humans can use to capture the health effects of social stress is perhaps not an fMRI but rather an endlessly expandable gallery of verbal and visual representations by people who identify themselves for themselves and who tell, show, and sound their pain in their own way. A place to start is to update federal and medical terms for race and ethnicity to reflect real peoples’ self-identification terminology. Additionally, careful prioritization of medical research funding for African Americans and populations of color can ensure socially-meaningful and effective health promotion and access to care for African Americans rather than to trap findings within a closed medical world. Finally, restructuring education from kindergarten to professional school so that it promotes diversity among clinical practitioners, medical faculty, and researchers is essential to reshaping medical research to meet the needs of diverse populations.
CDC (Centers for Disease Control and Prevention). Use of race and ethnicity in public health surveillance. Summary of the CDC/ATSDR Workshop. MMWR 1993; 42 (No.RR-10): https://www.cdc.gov/mmwr/preview/mmwrhtml/00021729.htm
CDC/National Center for Health Statistics; National Health Interview Survey (2015). https://www.cdc.gov/nchs/nhis/rhoi/rhoi_glossary.htm
Ehlers, Nadine and Leslie R. Hinkson, editors. Subprime Health: Debt and Race in U.S. Medicine. U Minnesota P, 2017.
Epstein, Steven. Inclusion: The Politics of Difference in Medical Research. U Chicago P, 2007.
Lacks, Ron. Henrietta Lacks: The Untold Story. Copyright: Ron Lacks. 2020.
Losin, Elizabeth A.R. et al. “Neural and Sociocultural Mediators of Ethnic Differences in Pain.” Nature Human Behaviour. Published online 3 Feb. 2020. https://doi.org/10.1038/s41562-020-0819-8
Roberts, Dorothy. Fatal Invention: How Science, Politics, and Big Business Re-Create Race in the Twenty-First Century. 2nd edition. The New Press, 2012.
Schwartz, Marie Jenkins. To Birth a Slave: Motherhood and Medicine in the Antebellum South. Harvard UP, 2006.
Washington, Harriet A. Medical Apartheid. Anchor; Reprint edition, 2008.
[i] Staton, Lisa J et al. “When race matters: disagreement in pain perception between patients and their physicians in primary care.” Journal of the National Medical Association vol. 99, no. 5 (2007): 532-8.
[ii] Authors use “race” 12 times and “ethnic” or “ethnicity” 139 times.
[iv] CDC/National Center for Health Statistics; National Health Interview Survey (2015). https://www.cdc.gov/nchs/nhis/rhoi/rhoi_glossary.htm
“Ethnic” is defined with Merriam-Webster as “of or relating to large groups of people classed according to common racial, national, tribal, religious, linguistic, or cultural origin or background.” Along with a technical definition, the dictionary offers a U.S.-specific sense of the term: “a member of an ethnic group, especially : a member of a minority group who retains the customs, language, or social views of the group.” In other words, ethnicity is typically construed as cultural affiliation in the U.S., and accordingly, the government’s definition specifies “culture or origin, regardless of race.”
[v] CDC. Health, United States Spotlight: Racial and Ethnic Disparities in Heart Disease. April 2019. https://www.cdc.gov/nchs/hus/spotlight/2019-heart-disease-disparities.htm
[vi] See Michael Marmot, The Status Syndrome, and T.R. Reid, The Healing of America, for example.
[vii] See Marmot and also Richard Wilkinson and Kate Pickett, The Spirit Level, for example.