From race-based to race-conscious medicine: how anti-racist uprisings call us to act
Jessica P Cerdeña*, Marie V Plaisime*, Jennifer Tsai*
The brutalisation of Jacob Blake and murders of George Floyd, Breonna Taylor, Ahmaud Arbery, Tony McDade, and countless others—coupled with horrifying statistics about the disproportionate burden of COVID-19 on Black and Brown communities—have forced the USA and the world to reckon with how struc tural racism conditions survival. Although clinicians often imagine themselves as benefcent caregivers, it is increasingly clear that medicine is not a stand-alone institution immune to racial inequities, but rather is an institution of structural racism. A pervasive example of this participation is race-based medicine, the system by which research characterising race as an essential, biological variable, translates into clinical practice, leading to inequitable care. In this Viewpoint, we discuss examples of race-based medicine, how it is learned, and how it perpetuates health-care disparities. We introduce raceconscious medicine as an alternative approach that emphasises racism, rather than race, as a key determinant of illness and health, encouraging providers to focus only on the most relevant data to mitigate health inequities.
Research in clinical medicine and epidemiology requires explicit hypotheses; however, hypotheses involving race are frequently implicit and circular, relying on conven tional wisdom that Black and Brown people are genetically distinct from White people.1 This common knowledge descends from European colonialisation, at which time race was developed as a tool to divide and control populations worldwide. Race is thus a social and power construct, with meanings that have shifted over time to suit political goals, including to assert biological inferiority of dark-skinned populations.2 In fact, race is a poor proxy for human variation. Physical characteristics used to identify racial groups vary with geography and do not correspond to underlying biological traits. Genetic research shows that humans cannot be divided into biologically distinct subcategories.3,4 Furthermore, ongoing overlap and mixture between populations erodes any meaningful genetic difference.5 Despite the absence of meaningful correspondence between race and genetics, race is repeatedly used as a shortcut in clinical medicine. For instance, Black patients are presumed to have greater muscle mass than patients of other races and estimates of their renal function are accordingly adjusted.6 On the basis of the understanding that Asian patients have higher visceral body fat than do people of other races, they are considered to be at risk for diabetes at lower bodymass indices.7 Angiotensin-converting enzyme (ACE) inhibitors are considered less effective in Black patients than in White patients, and they might not be prescribed to Black patients with hypertension (table).1,6–28 We argue
that such approaches are harmful and unnecessary, contributing to health-care disparities among the exact populations they are intended to help.
Emerging scholarship underscores the harms of these race-adjusted practices,29,30 even as some continue to defend them, touting their ability to capture yet-understood differences in clinical measures between racial groups.31,32 However, propagation of race-based medicine promotes racial stereotyping, diminishes the need for research identifying more precise biomarkers underpinning dispar ities, and condones false notions about the biological inferiority of Black and Brown people. Hence, even if signifcant fndings or clinical anecdotes support the use of racially tailored practices, they should be rigorously critiqued and mediating variables, such as structural conditions, should be analysed accordingly.
Many medical students enter their training with racial biases that are unconsciously reinforced. Race is often learned as an independent risk factor for disease, rather than as a mediator of structural inequalities resulting from racist policies. Health disparities are presented without context, leading students to develop harmful stereotypes on the basis of the belief that some populations are more diseased than others. Students learn to associate race with disease conditions, such as sarcoidosis, cystic fbrosis, hypertension, and focal segmental glomerulonephritis, which upholds their implicit understandings of race as a biological trait.33,34 Professors might misleadingly equate genetic ancestry, which could be meaningful when traced to a narrowly circumscribed population of origin (eg, Biafada people), with race (eg, African ancestry).35,36 On the wards, students learn that race is relevant to treatment decisions and have inadequate power to question the racialised assumptions of their supervisors.37–40 In this way, race-based medicine is quickly propagated.
Such racially tailored care might drive medical errors and increase health inequities. For instance, medical students who endorsed the false beliefs that Black patients had longer nerve endings and thicker skin than White patients also rated Black patients as feeling less pain and offered less accurate treatment recommendations in mock medical cases.41 This racialised belief in diminished pain sensitivity of Black patients translates to consistently inadequate pain management and their reduced likeli hood of receiving opioid prescriptions for severe pain.42,43 Furthermore, race-adjusted instruments might also affect disease management. The assessment of renal func tion in Black patients is based on a higher estimated glomerular fltration rate (eGFR), which might mask kidney failure, delaying dialysis and listing for trans plant.9,10 Race corrections for pulmonary lung function
Lancet 2020; 396: 1125–28
*Contributed equally Department of Emergency Medicine (J Tsai MD), Yale University School of Medicine, New Haven, CT, USA (J P Cerdeña MPhil); Department of Anthropology, Yale University, New Haven, CT, USA (J P Cerdeña); and Department of Sociology, Howard University, Washington, DC, USA (M V Plaisime MPH)
Correspondence to: Jessica P Cerdeña, Yale University School of Medicine, New Haven, CT 06510, USA jessica.cerdena@yale.edu
Viewpoint www.thelancet.com Vol 396 October 10, 2020 1125
eGFR6
How race is used Rationale for race-based management
eGFR for Black patients is multiplied by 1·16–1·21 the eGFR for White patients, depending on the equation used
BMI risk for diabetes7
Asian patients considered at risk for diabetes at BMI ≥23 vs 25 for patients of other races
Black patients are presumed to have higher muscle mass and creatinine generation rate than patients of other races
Asian patients are presumed to develop more visceral than peripheral adiposity than patients of other races at similar BMI levels, increasing risk for insulin resistance7
Potential harm Race-conscious approach
Black patients might experience delayed dialysis and transplant referral8,9
Asian patients screened for diabetes despite absence of other risk factors might experience increased stigma and distrust of medical providers11
Use eGFR equations that do not adjust for race (eg, CKD-EPI Cystatin C)10
Screen patients with lower BMIs on the basis of indications of increased body fat (eg, body roundness,12 body fat percentage), not based on race
FRAX13
Probability of fracture is adjusted according to geography or minority status, or both
PFT16 Reference values for pulmonary function are adjusted for race and ethnicity
JNC 8 Hypertension Guidelines19
Paediatric UTI diagnosis21
ASCVD risk estimation
White race in girls and nonBlack race in boys are considered independent risk factors for UTI
Race-specific equations included to estimate ASCVD risk
Different geographical and ethnic minority populations are presumed to have varied relative risks for fracture on the basis of epidemiological data
Racial and ethnic minority groups are presumed to have varied lung function on the basis of epidemiological data
ACE-inhibitor use associated with higher risk of stroke and poorer control of blood pressure in Black patients than in patients of other races
Study of febrile children in the emergency department found highest prevalence of UTI among White girls and non-Black boys22
ASCVD events higher for Black patients than patients of other races with otherwise equivalent risk burden24
Some populations, including Black women, might be less likely to be screened for osteoporosis than other populations14
Black patients might experience increased difficulty obtaining disability support for pulmonary disease17
Black patients might be less likely to achieve hypertension control and require multiple antihypertensive agents20
Experimental data suggests that these guidelines could affect management of UTI by race23
Black patients might experience more adverse effects from recommended statin therapy, including persistent muscle damage25
Eltrombopag dosing
East Asian patients receive half the starting dose compared with non-east Asian patients
Limited pharmacokinetic studies suggest reduced metabolism of eltrombopag in patients of East Asian descent27
Some East Asian patients might receive inappropriate dosing28
Screen patients for osteoporosis on the basis of clinical risk criteria, rather than race; counteract existing biases that place Black patients at risk because of racial essentialist beliefs about variation in bone density15
Use unadjusted measures of lung function for all patients; counteract existing biases that harm Black patients because of racial essentialist beliefs about variation in lung capacity18
Consider all antihypertensive options for blood pressure control in Black patients; adjust as needed to achieve goals and manage adverse effects
Treat UTI in children on the basis of clinical presentation, regardless of race
Recommend preventive therapy on the basis of clinical metrics and comorbidities; consider pathways by which structural racism might increase cardiovascular risk among Black patients and promote resources to reduce racial stress and trauma26
Initiate same starting dose for all patients, regardless of race, and adjust as needed on the basis of platelet response
groups (eg, White, Black, Asian) and domains in which race is essentialised as biological (eg,
Examples of race-based
capacity). ACE=angiotensin-converting enzyme. ASCVD=atherosclerotic cardiovascular disease. BMI=body-mass index. CKD-EPI=Chronic Kidney Disease Epidemiologic Collaboration equation. eGFR=estimated glomerular filtration rate. FRAX=fracture risk assessment score. JNC 8=Eighth Joint National Committee. PFT=pulmonary function test. UTI=urinary tract infection.
Table: Examples
tests also reduce the likelihood that Black patients can obtain disability support for their lung disease.18 These examples show the necessity of transitioning from a racebased system of clinical care to race-conscious practice. Adopting the language of race-conscious policy, we accordingly provide the following recommendations for race-conscious medicine.
First, racist, racially tailored practices that propagate inequity should be avoided. Race should not be used to make inferences about physiological function in clinical practice. Race-adjusted tools should be abandoned or
alternatives
replaced with more precise analytics than currently used. For instance, the health systems of the University of Washington, the University of California San Francisco, the Beth Israel Deaconess, and the Vanderbilt University eliminated the race-correction for eGFR. Clinical teams should reconsider the use of race in the opening sentence of an encounter note and instead consider including relevant indicators of structural vulnerability (eg, Spanishspeaking woman aged 41 years instead of Black woman aged 41 years). Race should be used to assess for expe riences of discrimination and refer to affinity-based
Treatment algorithm provides alternate pathways for Black and non-Black patients
Viewpoint 1126 www.thelancet.com Vol 396 October 10, 2020
medicine were chosen to represent multiple racial
pharmacokinetics, bone density, lung
of race-based medicine, the potential harm to patients, and race-conscious
Race-based medicine
Research
Racial health inequities
support services. Second, it should be taught that racial health disparities are a consequence of structural racism. Beginning in preclinical education, racial disparities in disease should be explained within the framework of the structural determinants of health, defning race as a social and power construct. Awareness of institutional inequities as a root cause of ongoing racial injustice promotes structural competency in clinical practice.44 In addition, phenotypic race should be distinguished from genetic ancestry and students should be discouraged from narrowing differential diagnoses and management on the basis of perceived race. Third, resolutions denouncing race-based medicine across clinical leadership should be adopted. Effective action to eradicate race-based medicine will require cooperation across clinical leadership, including those professional societies responsible for setting practitioner standards. Societies for health-care practitioners should consider resolutions denouncing the use of race-based medicine in their trainings, guidelines, and other publications, and require that race be explicitly characterised as a social and power construct when describing disease risk factors. Black, Indigenous, and other people of colour should be included in (and rewarded for their contributions to) decision making processes to reform disease management guidelines.45 Some forward-thinking societies have already made strides to advance such resolutions. Finally, clinical research should be used to examine structural barriers, rather than using race as a proxy for biology. Clinical journals should include in their publication guidelines instructions to avoid the use of race as a proxy for biological variables, such as genetics, pharmacokinetics, and metabolism. Hypotheses using racial labels should make the authors’ defnition and operationalisation of race explicit. Additionally, structural barriers to health that overlap with race should be considered, including socioeconomic status, discrimination, transportation, environmental exposures, criminal history, documentation
status, English profciency, and neighbourhood violence. Models and measures of structural racism that account for policy influences can be developed and used to assess health impacts, rather than solely including race as an independent variable.46–48
Our multi-pronged, race-conscious approach seeks to reform race-based medicine across clinical practice, education, leadership, and research (fgure). These recommendations aim to promote conscious, anti-racist practices over unchecked assumptions that uphold racial hierarchies.49 In doing so, medicine can make substantial strides toward achieving health equity.
Health care is merely one institution plagued by structural racism: a comprehensive antidote to racial health disparities will require collaboration across sectors of housing, education, transportation, criminal justice, and environmental justice. We should encourage health-care practitioners to leverage their cultural capital to advocate for antiracist policies. Through conscious effort and collaboration, health-care providers can work towards racial equity within and beyond the walls of examination rooms.
Contributors
JPC and MVP conceived the idea of this Viewpoint and prepared the original manuscript draft. JT contributed to manuscript revision. JPC prepared the fnal version of the manuscript with input from MVP and JT.
Declaration of interests
We declare no competing interests.
Acknowledgments
JPC and MVP are supported by the Robert Wood Johnson Health Policy Research Scholars Program. JPC is supported by the National Institutes of Health Medical Scientist Training Program Grant T32GM13665.
References
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2 Roberts D. Fatal invention: how science, politics, and big business re-create race in the twenty-frst century. New York and London: The New Press, 2011.
Figure: How race-based medicine leads to racial health inequities
An alternative approach to race-conscious medicine; defined as medical practice and pedagogy that accounts for how structural racism determines illness and health.
Race ill-defined and inferred to have biological significance
Epidemiological and clinical studies link race with disease
Racial groups understood as inherently diseased
Health-care bias and stereotyping
Basic or translational science studies link race with biology
Biologised concepts of race reinforced
Racially tailored clinical practices
Race-conscious medicine
Medical education Clinical practice
Race defined as a social and power construct
Effects of structural racism analysed
Consequences of racism on health taught
Viewpoint www.thelancet.com Vol 396 October 10, 2020 1127 Support provided to overcome structural barriers to health
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22 Shaw KN, Gorelick M, McGowan KL, Yakscoe NM, Schwartz JS. Prevalence of urinary tract infection in febrile young children in the Emergency Department. Pediatrics 1998; 102: e16.
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28 Rajman I, Hirano M, Honma W, Zhao S. New paradigm for expediting drug development in Asia. Drug Disc Today 2020; 25: 491–96.
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30 Eneanya ND, Yang W, Reese PP. Reconsidering the consequences of using race to estimate kidney function. JAMA 2019; 322: 113–14.
31 Levey AS, Titan SM, Powe NR, Coresh J, Inker LA. Kidney disease, race, and GFR estimation. CJASN 2020; published online May 11. https://doi.org.10.2215/CJN.12791019.
32 Powe NR. Black kidney function matters: use or misuse of race? JAMA 2020; published online July 29. https://doi.org.10.1001/ jama.2020.13378.
33 Tsai J, Ucik L, Baldwin N, Hasslinger C, George P. Race matters? Examining and rethinking race portrayal in preclinical medical education. Acad Med 2016; 91: 916–20.
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41 Hoffman KM, Trawalter S, Axt JR, Oliver MN. Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between Blacks and Whites. Proc Natl Acad Sci USA 2016; 113: 4296–301.
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© 2020 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY-NC-ND 4.0 license.
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Debra Malina, Ph.D., Editor
Misrepresenting Race — The Role of Medical Schools in Propagating Physician Bias
Christina Amutah, B.A.,* Kaliya Greenidge,* Adjoa Mante, A.B.,* Michelle Munyikwa, Ph.D.,* Sanjna L. Surya, B.A.,* Eve Higginbotham, M.D., David S. Jones, M.D., Ph.D., Risa Lavizzo‑Mourey, M.D., M.B.A., Dorothy Roberts, J.D., Jennifer Tsai, M.D., M.Ed., and Jaya Aysola, M.D., D.T.M.H., M.P.H.
Conceptions of race have evolved and become more nuanced over time. Most scholars in the biologic and social sciences converge on the view that racism shapes social experiences and has biologic consequences and that race is not a meaningful scientific construct in the absence of context.1-3 Race is not a biologic category based on innate differences that produce un equal health outcomes. Rather, it is a social category that reflects the impact of unequal so cial experiences on health. Yet medical education and practice have not evolved to reflect these advances in understanding of the relationships among race, racism, and health. More than a decade after the Institute of Medicine (IOM, now the National Academy of Medicine, or NAM) issued its report Unequal Treatment, racial/ethnic disparities in the quality of care persist, and in some cases have worsened.4 Such inequalities stem from structural racism, macrolevel bias intrinsic in the design and operations of health care institutions, and implicit bias among physicians.4,5 The majority of U.S. physicians have an implicit bias favoring White Americans over Black Americans, and a substantial number of medical students and trainees hold false beliefs about racial differences.6-9
These widespread problems are reflected in the fact that race is one of the most entrenched and polarizing topics in U.S. medical education. Efforts to advance health equity in medical edu cation have ranged from implicit-bias training to supplementary curricula in structural compe tency, cultural humility, and antiracism.10-12 Re searchers have highlighted the domains of mis use of race in medical school curricula and their potential role in propagating physician bias.13-15
In examining more than 880 lectures from 21 courses in one institution’s 18-month preclinical medical curriculum, we found five key domains in which educators misrepresent race in their discussions, interpretations of race-based data, and assessments of students’ mastery of racebased science.
Indeed, in all the authors’ home institutions we found similar misrepresentations of race.15 Social medicine or equivalent courses discuss race in a nuanced manner, but misrepresenta tions arise in all other courses, including organsystem blocks and basic science classes. Consideration of these five domains in the preclinical curricula (Table 1) inform our recommendations for correcting content that may reinforce or in still race-based biases (Table 2).
Foundations: Semantics
Finding a shared language for discussing race and health disparities is an important first step in transforming the use of race in medicine. Commonly, the lectures still referenced anti quated labels such as “Caucasian” or used social racial labels such as “Black,” “African Ameri can,” and “Asian” in an inconsistent way to convey biologic information. For example, lecturers used “African American” to describe anyone with African ancestry, disregarding differences between first- and second-generation immigrants from the Caribbean or Africa and those whose ancestors were enslaved in the United States. The category “African American” is a socially and politically meaningful identity for many people, but not for all people of African descent. Moreover, it is a poor proxy for
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Table 1. Misrepresentation of Race in Preclinical Curricula.
Domain Description
Semantics
Prevalence without context
Using imprecise and nonbiologic labels that inaccurately conflate race and ancestry
Presenting racial/ethnic differences in disease burden without contextual ization
Race based diagnostic bias
Pathologizing race
Race based clinical guidelines
Presentation of links between racial groups and particular diseases
The tendency to link minorities with increased disease burden
Teaching of guidelines that endorse the use of racial categories in the diag nosis and treatment of diseases
genetic difference, since it lumps together per sons with immediate or distant ancestors from eastern, western, southern, and northern Africa despite considerable genetic differences among these populations and despite any mixed ancestry from elsewhere.25,26
Discussions of race often touch on the complex ideas of ethnicity and ancestry. “Ethnicity” refers to social groupings that are based on some combination of shared language, history, religion, and culture. Ethnic groups often over lap with racial groups, particularly in contexts where racial groups have shared historical experiences (e.g., enslavement) and in the U.S. Census categorization of races. Although ethnicity may reflect cultural and biologic lineages of in heritance, it, like race, is a poor proxy for ances try.3 The NAM therefore recommends using a combined question to capture the social catego ries of race/ethnicity and using a set of granular categories (e.g., country of origin) to approximate ancestry (Table 2).22
Prevalence without Context
Racial/ethnic differences in burden of disease are often presented without any context, which primes learners to attribute these differences exclusively to genetic predisposition. One representative example from the curriculum we ex-
Representative Examples
Widespread use of “Caucasian,” “Black,” “African American,” and “Asian” as labels to denote biologic differences between patients
Describing a Nigerian patient as “African American” in a clinical vignette
Teaching students that “Black” patients have higher rates of asthma than “White” patients, without reference to the effects on asthma preva lence of residential segregation and unequal access to high quality housing and health care16
Teaching students that “Black” patients have higher rates of hospital re admission, without any discussion of the underlying causes of these disparities
Priming students to view sickle cell disease as affecting only Black people, rather than as common in populations at risk for malaria17,18
In a slide showing the incidence of 13 types of brain tumors in Black pa tients and White patients, using the title “Incidence rates are higher among Blacks than among Whites,” even though 10 of the tumors occurred more frequently in White patients
Teaching students to use different first line antihypertensive drugs in Black patients than in White patients, without any exposure to litera ture that questions these practices and misleading interpretations of information19 21
amined was the presentation of the dispropor tionate burden of type 2 diabetes among the U.S. Akimel O’odham (also known as Pima) people, without sufficient explanation of historical and social causes. Despite high degrees of genetic similarity, the Akimel O’odham living in Mexico have significantly lower rates of type 2 diabetes and obesity than those living in the United States.27 A historical insult, not a genetic predis position, explains this pattern.27,28 Historically, many members of U.S. Akimel O’odham com munities were master water engineers, and the tribe lived off the Gila River and had only one documented case of diabetes.29,30 Because of the expansion of Euro-American settlement, their livelihood was threatened by the diversion of the Gila and Salt Rivers and the construction of the Gila and Roosevelt Dams.31 Afterward, the U.S. military gave them calorie-dense, nutrient-poor surplus foods such as white flour, cheese, refined sugar, lard, and canned food. This program did not offer fresh produce until 1996.32 The Akimel O’odham have since sought increased access to and protection of their water sources, and their efforts led to the Arizona Water Settlement Act of 2004 and ongoing local actions for water rights.31 Providing such context in medical school would equip students to distinguish disparate environmental exposures from inherited genetic differences.
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Table 2. Recommendations for Improving the Use of Race in Medicine.*
Recommendation
Standardize language used to describe race/ethnicity.
Key Suggestions for Improvement Resources
Use granular ethnicity or ancestry (e.g., country of origin) to discuss genetic predisposition to disease.
Avoid using imprecise language to approximate ancestry, such as “Asian” or “African American,” when discussing genetic predis position to disease.
Use categories that reflect societal norms for defining populations in discussing unequal treatment or unequal burden of disease attributable to bias and structural racism. Use combined race/ ethnicity rather than just race. The responses to the recommend ed 1 question format that combines race and ethnicity are Native American or Alaska Native; Asian; Black or African American; Hispanic or Latino; Native Hawaiian or Other Pacific Islander; White; and Multi (select multiple options above).
Avoid the use of outdated terms, such as “Caucasian,” that do not reflect current societal norms in defining race or approximate ancestry.
National Academy of Medicine (Institute of Medicine)22: Template of Granular Ethnicity Category Lists and Coding Schemes with Rollup to the OMB Race and Hispanic Ethnicity Categories, and OMB Race and Hispanic Ethnicity Categories according to a one and two question format
Appropriately contextualize racial/ethnic differences in disease burden.
Carefully consider whether the population categories used in a study or lecture represent true genetic differences due to ancestry.
When discussing genetic susceptibility, avoid the use of race as the sole reason for differences in disease burden between popula tions. To approximate ancestry, instead use granular ethnicity (e.g., country of origin).
Always consider structural and social determinants of disease when discussing the causes of unequal disease burden. Consider the socioeconomic and political differences between population cat egories and trends over time of the disease burden in the context of historical insults such as slavery and residential segregation, as well as the environmental influences of migration.
Stonington et al.12; Bailey et al.23
Generate and impart evidence based medical knowledge when it comes to race.
Incorporate best practices regarding the use and interpretation of race/ethnicity in human subjects training programs, such as CITI.
Involve funding agencies and medical journals in reinforcing these best practices.
Reform board examinations (e.g., USMLE) to avoid testing students on race based clinical guidelines and racial heuristics.
Ripp and Braun24; Vyas et al.1
* OMB denotes Office of Management and Budget, CITI Collaborative Institutional Training Initiative, and USMLE U.S. Medical Licensing Examination.
Race-Based Diagnostic Bias
The use of racial terms to describe epidemiologic data perpetuates the belief that race itself puts patients at risk for disease, and this belief is the basis for race-based diagnostic bias. Rather than presenting race as correlated with social factors that shape disease, or acknowledging race as an imperfect proxy for ancestry or family history that may predispose one to disease, the educators we observed portrayed race itself as an es sential — biologic — causal mechanism. Lectur ers frequently connected diseases to particular racial groups. For example, we found that stu dents are primed to perceive cystic fibrosis as a disease of White people, which may lead to overlooking this diagnosis in a Black patient.
Similarly, students are primed to view sickle cell disease as affecting only Black people, rather than as common in populations at risk for ma laria. (Table 1).17,18
Pathologizing Race
In addition to linking particular race/ethnicities with particular diseases, it is common to link minorities with pathology in general — to pathologize race. With rare exception, educators highlighted increased disease burden exclusively in marginalized racial/ethnic groups. Race was also misused as a proxy for genetic difference, socioeconomic status, or behavioral risk factors. The cumulative effect of overrepresenting minorities as high-risk is the creation of an im-
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plicit link between race and predisposition to disease, which reinforces the view that race/ ethnicity disparities in health stem from innate racial differences. This representation contributes to stigma and unequal treatment of minority patients, concretizes race-based hierarchies, and obfuscates the role of racism in producing health outcomes.
Educators routinely pathologized race, describ ing poor health outcomes for minority patients without referencing research on racism’s effects on health. For example, a lecture presented “race-and-ethnicity–adjusted life expectancy” without explaining how race/ethnicity affects life expectancy. Such lectures are missed oppor tunities to discuss the relationships among race, racism, and health outcomes — discussions that are essential if trainees are to comprehend health inequity.33 Structural racism, such as policies that segregate neighborhoods by race, creates differential opportunities for education, employment, and optimal health.34,35 Chronic exposure to racial discrimination also negatively affects health, contributing to race/ethnicity dis parities in health and mortality.23,36,37 Students are rarely exposed to such research or its impli cations.
Race-Based Clinical Guidelines
Race-based clinical guidelines are a predictable outcome of the inaccurate use and interpretation of race. These guidelines are taught to medical students and physicians without information about their origin and evidentiary basis.
Research conducted with a flawed understanding of race informs flawed guidelines. Pervasive in medicine, such guidelines endorse the use of racial categories in the diagnosis and treatment of common conditions such as hyper tension and pediatric urinary tract infections, despite their grounding in misguided scientific inquiry and interpretation of data.1,19,20
A critical example to highlight given its relevance to preclinical curricula is the upward adjustment for persons designated as Black or Af rican American in estimating the glomerular filtration rate (GFR), which raises the threshold for concern for Black patients only. A patient with one Black parent and one White parent and whose creatinine level is 2.8 mg per deciliter would have an estimated GFR of 18 ml per min-
ute per 1.73 m2 if identified as White and 21 ml per minute per 1.73 m2 if identified as Black. As a White patient, she would qualify to be added to the waiting list for a kidney transplant, but as a Black patient she would not — a distinction that magnifies well-established racial and ethnic disparities in renal transplant referrals.38 If the patient identified as both races or mixed race, the clinician would be left to make the binary choice.
Exacerbation of health care disparities stem ming from this correction factor is not limited to nonreceipt of indicated care, such as early referrals to a nephrologist or the transplant list, but can also manifest as the receipt of contrain dicated care, such as continuation of metformin or receipt of intravenous contrast during imag ing procedures. Yet race-based GFR calculation remains in both medical curricula and practice, despite these problems and evidence calling its validity into question.1 Routine use of race correction will not solve these problems. Instead, clinicians need to attend carefully to each pa tient, their possible genetic risk factors, and other relevant variables before interpreting a test and making treatment recommendations.
These guidelines use race as a biologic marker for disease or a proxy for genetic predisposition and perpetuate the notion that race is a biologic category. There may be relevant physiological differences among humans that correlate with ancestral background; however, these differenc es do not correlate well enough with the social categories of race/ethnicity to justify their teach ing and use in medicine. This lack of correlation, however, does not imply that race should not be used in medicine or medical education. Unequal treatment in health care due to struc tural and unconscious racism can be measured and eliminated only if we continue to discuss race.
Recommendations
It is not surprising that curricular content in medical schools consistently reinforces the notion of race-based biologic differences15: this tendency reflects entrenched societal beliefs and institutional norms. And students may enter medical school already holding common mis conceptions about race/ethnicity. But this very ubiquity argues for acting to reshape our use of race in the medical school curriculum and aim-
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ing to impart the most accurate and current science and knowledge about the social struc tures affecting health.
Rather than oversimplifying conversations about factors affecting disease prevalence, diagnosis, and treatment, medical educators can impart an adequate and accurate understanding of the complexity of these relationships. Human biologic variation certainly exists, but in evaluat ing differences we need to use categories that are more granular and specific than race/ethnic ity. Biologic variation is not categorical, based on one perceived phenotypic attribute, but rather clinal, reflecting minor gradations of difference in myriad phenotypic attributes.39,40 When bio logic differences are noted between socially constructed categories of race/ethnicity, further inquiry into their causes is required, including evaluating variation within and between more granular categories that better approximate ancestry, as well as differences attributable to migration patterns or environmental exposures. An emphasis on inherent biologic differences by categorical race/ethnicity misrepresents the root causes of illness and distracts from structural racism and the sociopolitical and historical underpinnings of health inequities. To change this emphasis, we offer three recommendations (Table 2).
First, we can standardize the use of language for describing race/ethnicity in teaching, research, and clinical practice. The IOM report Standardiza tion of Race, Ethnicity, and Language provides evi dence-based guidelines for doing so.22 Standard izing our use of race is foundational to an evidence-based framework for combating physician bias, since there remains obvious confusion about race as a biomedical term. When discuss ing disparities in health and health care that result from bias and structural racism, we rec ommend using the updated combined racial/ ethnic categories proposed by the NAM. Granu lar ethnic categories that account for country of origin are better suited for discussions of genetic predisposition. However, these discussions should also encompass social context, to avoid reinforcing the inaccurate and harmful concept of distinct biologic races. Greater emphasis should be placed on the social determinants of health.41,42
Second, in appraising research studies and in teaching, we should consider upstream contribu-
tors to racial/ethnic differences in burden of disease. Training in structural competence equips learners to understand how social, po litical, and historical forces and structures affect health.43 Students should understand how structural and institutional racism, coupled with interpersonal discrimination, negatively affects po licing, the criminal justice system, health care, education, food security, housing, and employ ment.11,23,44-46 Applying such considerations in examining epidemiologic patterns of disease facilitates a holistic understanding of health disparities that emphasizes the dynamic interplay between our biology and the environment.47-49 Integrating into the curriculum re search that elucidates these structural and social determinants of health may help students to understand why some racial/ethnic groups have increased prevalence of certain diseases and to later apply this knowledge to patient care.50,51
Such work also helps contextualize racebased screening guidelines. Insofar as such guidelines contribute to mitigating the dispro portionate burden of disease in marginalized communities, they are key components in ad vancing health equity. But it’s important to rec ognize that racial/ethnic disparities are defined in terms of social, not biologic, classifications, and therefore such guidelines aim to address outcomes derived from social, not genetic, factors. Further research is needed to define dis parities using categories that better approximate ancestry to inform guidelines that account for and mitigate disease risk due to genetic predis position.
Finally, we can change the way we use race to generate and assess medical knowledge. Researchers should strive to discern in their analy ses what race is being used as a proxy for — biologic markers or social and structural contributors to disease. Training programs for human-subjects research, such as the Collabora tive Institutional Training Initiative, can teach researchers when and how best to use and interpret race/ethnicity in designing and analyzing their studies. Funding agencies and medical jour nals can also reinforce best practices in using and interpreting racial/ethnic categories.52-54
A common argument for the imprecise use of race in the medical curriculum is that board examinations test students on race-based guidelines and racial heuristics.24 Such exams can be
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reformed, but in the interim, the way we impart medical knowledge matters. If educators discuss the antecedents of disease comprehensively, stu dents will be able to strategically recognize racebased patterns on such exams without perceiving them as absolute or a result of biologic differences.
Medical education and research are inter twined and jointly responsible for perpetuating misunderstandings of race. Students carry such misinformation with them into the clinic, where their implicit biases and misconceptions perpetuate disparities in health care. We are not arguing that race is irrelevant, and our framework is not meant to trigger discussion of the advantages and disadvantages of using race in medicine; rather, we wish to provide evidencebased guidelines for defining and using race in generating and imparting medical knowledge. Race, though not a biologic concept, can be a starting point from which to generate hypotheses about environmental exposures and social processes that produce disparities in health outcomes. It is also vital to use race/ethnicity to measure and mitigate unequal treatment attribut able to structural and individual implicit biases. Discussing race and naming racism are essential to promoting an antiracist culture. Rather than abandoning the use of race in medicine, we believe we should transform the way it is used, embracing a more rigorous, multidisciplinary, and evidence-based understanding of how race, racism, and race-based science contribute to in equities in health and health care.
Disclosure forms provided by the authors are available at NEJM.org.
From the Perelman School of Medicine (C.A., A.M., M.M., S.L.S., E.H., R.L. M., J.A.), School of Arts and Sciences (K.G., D.R.), the Penn Medicine Center for Health Equity Advance ment (K.G., J.A.), the Leonard Davis Institute of Health Eco nomics (E.H., R.L. M., J.A.), Carey Law School (D.R.), and the Penn Program on Race, Science, and Society (D.R.), University of Pennsylvania, Philadelphia; Harvard Medical School, Boston (D.S.J.); the Department of Emergency Medicine, Yale School of Medicine, New Haven, CT (J.T.); and the Warren Alpert Med ical School of Brown University, Providence, RI (J.T.).
*Ms. Amutah, Ms. Greenidge, Ms. Mante, Dr. Munyikwa, and Ms. Surya contributed equally to this article.
This article was published on January 6, 2021, and last updated on January 20, 2021, at NEJM.org.
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DOI: 10.1056/NEJMms2025768
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Virtual Mentor
American Medical Association Journal of Ethics
September 2014, Volume 16, Number 9: 674-690.
FROM VIRTUAL MENTOR SPECIAL CONTRIBUTORS Structural Competency Meets Structural Racism: Race, Politics, and the Structure of Medical Knowledge
Jonathan M. Metzl, MD, PhD, and Dorothy E. Roberts, JD
Physicians in the United States have long been trained to assess race and ethnicity in the context of clinical interactions. Medical students learn to identify how their patients’ “demographic and cultural factors” influence their health behaviors [1]. Interns and residents receive “cultural competency” training to help them communicate with persons of differing “ethnic” backgrounds [2]. And clinicians are taught to observe the races of their patients and to dictate these observations into medical records “Mr. Smith is a 45 year old African American man” as a matter of course [3].
To be sure, attention to matters of diversity in clinical settings has been shown to affect a number of factors central to effective diagnosis and treatment [4]. Yet an emerging educational movement challenges the basic premise that having a culturally competent or sensitive clinician reduces patients’ overall experience of stigma or improves health outcomes. This movement, called “structural competency” [5], contends that many health-related factors previously attributed to culture or ethnicity also represent the downstream consequences of decisions about larger structural contexts, including health care and food delivery systems, zoning laws, local politics, urban and rural infrastructures, structural racisms, or even the very definitions of illness and health. Locating medical approaches to racial diversity solely in the bodies, backgrounds, or attitudes of patients and doctors, therefore, leaves practitioners unprepared to address the biological, socioeconomic, and racial impacts of upstream decisions on structural factors such as expanding health and wealth disparities [6].
In 1968, the US civil rights activist Stokely Carmichael famously assailed racial bias embedded, not in actions or beliefs of individuals, but in the functions of social structures and institutions. “I don’t deal with the individual,” he said. “I think it’s a copout when people talk about the individual” [7]. Instead, speaking to a group of mental-health practitioners, Carmichael protested the silent racism of “established and respected forces in the society” that functioned above the level of individual perceptions or intentions and that worked to maintain the status quo through such structures as zoning laws, economic policies, welfare bureaucracies, school systems, criminal law enforcement, and courts. Institutionalized racism, he argued, “is less overt, far more subtle, less identifiable in terms of specific individuals committing the acts, but is no less destructive of human life” [7].
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Attention to structure as an organizing principle in US medical education is particularly important at the current moment because the forces Carmichael described have become more pressing and recognizable. Indeed, US physicians have never known more about the ways in which the inequities of social and economic systems help to shape the material realities of their patients’ lives. Epidemiologists tie the daily experience of racial discrimination to damaging levels of chronic stress, illuminating how racism is “embodied” [8, 9]. Neuroscientists show neuronal linkages of social exclusion and poverty with hampered brain functioning [10, 11]. Epigenetic researchers explain, at the level of gene methylation, how high-stress, resource poor environments can produce risk factors for disease that may last for generations if not interrupted by social interventions [12]. And economists prove that people with low incomes can reduce their rates of diabetes and major depression by moving to safer, more affluent neighborhoods [13]. These are but a few examples of the types of research that doctors can now access to understand how disadvantages stemming from social and economic infrastructures can impair health
On the other hand, evidence also suggests that inattention to these forces has caused a crisis of competence for which American medical education is ill prepared. Eighty five (85) percent of primary care providers and pediatricians polled in a 2011 Robert Wood Johnson survey agreed with the statement that “unmet social needs are leading directly to worse health for all Americans” while at the same time voicing concern that they did not “feel confident in their capacity to meet their patients’ social needs,” and that their failure to do so “impedes their ability to provide care” [14].
Building on scholarly work from fields including law [15], public health [16 18], history [19, 20], and sociology [21], structural competency addresses these “social needs” and their links to race and racism [22] by increasing clinician recognition of the health related influences of institutions, markets, and health care delivery systems. This, in turn, shapes doctors’ diagnostic knowledge, influencing what happens in the clinic in profound ways.
This essay uses three historical case studies to illustrate how extraclinical stigma, socioeconomic factors, and politics can shape diagnostic and treatment disparities. We then explore how attention to structure helps explain the role of race in clinical encounters. Finally, we draw some lessons for medical education that take account of structure.
Case 1: The Overdiagnosis of Schizophrenia
An epidemic of insanity afflicted African American men in the 1960s 1980s. Or so it seemed to mental health researchers at the time. In 1969, a series of National Institute of Mental Health studies found that “blacks” suffered from schizophrenia 65 percent more frequently than did “whites.” In 1973, a series of studies in the Archives of General Psychiatry discovered that African American patients were “significantly more likely” than white patients to receive schizophrenia diagnoses and “significantly less likely” than white patients to receive diagnoses for other mental illnesses such as depression or bipolar disorder [23 25].
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Such findings flew in the face of standard psychiatric understanding that most major psychiatric disorders should occur equally among all persons, regardless of race. And yet the problem worsened: researchers in the 1970s and 1980s discovered that doctors diagnosed the paranoid subtype of schizophrenia in African American men five to seven times more often than in white men [26, 27].
At the time, this overdiagnosis appeared to be a problem caused by doctor-patient miscommunication or mistrust. Clinical educators thus began a series of crosscultural initiatives meant to eliminate physician bias, under the assumption that such bias was the prevailing cause of the diagnostic disparities. Yet these initiatives were largely unsuccessful [28]. Why?
We now recognize that the misdiagnosis of schizophrenia resulted, not just from clinical bias, but from structural shifts in psychiatric definitions of the illness. For instance, prior to the 1960s, psychiatry defined schizophrenia as a psychological “reaction” to a splitting of the basic functions of personality. In 1952, the first edition of what later became the Diagnostic and Statistical Manual (DSM) described “Schizophrenic Reaction” as “emotional disharmony, unpredictable disturbances in stream of thought,” and “regressive behavior” [29]. As a result of this framing, medical authors frequently described schizophrenia as a condition that afflicted middle class, white housewives [30]. Until that time, mainstream American newspapers had described schizophrenia as an illness that occurred “in the seclusive, sensitive persons” [31, 32] or told of white “schizophrenic poets” who produced brilliant rhymes [33]. Popular magazines wrote stories about unhappily married, middle-class, white housewives whose “schizophrenic mood swings” were suggestive of “Doctor Jekyll and Mrs. Hyde” [34-38]
But in 1968, the second edition of the DSM recast paranoid schizophrenia as a condition of “hostility,” “aggression,” and projected anger, and included text explaining that, “the patient’s attitude is frequently hostile and aggressive, and his behavior tends to be consistent with his delusions” [39]. As Metzl has previously shown, the addition of concepts such as aggression and hostility had profound racial implications [20]. In the aftermath of the DSM II, clinician overdiagnosis of schizophrenia in African American men rose significantly [40]. Published psychiatric research articles and case studies began to disproportionately describe “schizophrenic” African American men using descriptors such as aggressive, hostile, or violent (see figure 1).
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Figure 1. Adjectives used to describe patients with schizophrenia in psychiatric journals, 1960 1979 [20]. Test articles=those in which race was identified as “Negro” or “black.” Random articles=those in which race was unspecified and assumed white. N=341.
Advertisements for antipsychotic medications published in leading US journals made similar assumptions [30]. An advertisement for the antipsychotic medication Haldol that appeared in the May 1974 Archives of General Psychiatry (see figure 2) shows the troubling, distorted image of an angry African American man below the text, “Assaultive and belligerent? Cooperation often begins with Haldol” [41].
Figure 2. 1974 Haldol advertisement, Archives of General Psychiatry [41]
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These and other examples suggest that the overdiagnosis of schizophrenia in African American men in the 1960s and 1970s resulted neither primarily from individual doctors’ biases nor from the actions or symptoms of patients. Rather, it reflected a series of structural shifts in the framing of mental illness that incorporated racially and politically inflected terminology.
Case 2: The Unhealthy Diet
For much of the twentieth century, medical practitioners defined patients who did not follow medical advice about diet or lifestyle as “noncompliant.” This rhetoric often coded such patients as refusing for individual or cultural reasons to take steps necessary to improve their health or longevity. In the US, the descriptor of noncompliance frequently applied to persons of lower socioeconomic status or persons from minority groups [42]. For instance in the mid 1980s, studies tended to define Native Americans with type 2 diabetes as being “diet noncompliant” [43].
Through the early 2000s, dieticians listed “the African-American diet” as a risk factor for the disease [44]. Over this same time period, even well intentioned public health efforts focused on altering minority “attitudes” and practices regarding such matters such as diet, exercise, and smoking [45, 46].
No doubt individual choice and cultural influence are important in the development of health promoting behaviors. Recently, however, the impact of socioeconomic and structural factors on such choices has become more apparent. For instance, it has become increasingly clear that maintenance of a “healthy” diet is rendered exceedingly difficult for persons who live in low income or underserved areas, not because of racial or ethnic attitudes, but because these areas are dramatically lacking in the services that make a healthy diet possible in the first place. Sociologists [47] detail how, since certain impoverished neighborhoods in the US contain no grocer y stores and are inaccessible by public transportation, residents of these neighborhoods must walk up to three hours to purchase fresh produce and how such a commute is rendered exponentially more challenging by the absence of sidewalks [48].
Residents of low income areas are at the same time targets of marketing and product manipulations. The Wall Street Journal detailed how junk food companies aggressively market discounted bags of potato chips to “inner city African Americans and Latinos” [49]. Meanwhile, a New York Times investigative report uncovered how cigarette companies up the nicotine content of cigarettes [50] and public health scholars describe how food corporations manipulate unhealthy products to enhance their addictive appeal [51].
Together, such findings suggest that attributes previously defined as “cultural” reflect the influences and actions, not just of persons, cultures, or attitudes, but also of the larger social and economic forces that influence diet, such as the distribution of resources, the presence or absence of food choices, targeted marketing, and the condition of infrastructure. Interventions that locate compliance or noncompliance in
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clinic-level decisions risk overlooking, or indeed misdiagnosing, the impact of such structural forces on individual or cultural morbidities and mortalities.
Case 3: The Punitive Treatment of Women Who Use Drugs During Pregnancy
In fall 1989, the Medical University of South Carolina (MUSC), a state hospital serving an indigent minority population, began collaborating with Charleston police and prosecutors to address a perceived increase in babies testing positive for drugs [52]. Hospital and law enforcement officials instituted what was called the “Interagency Policy on Cocaine Abuse in Pregnancy,” which allowed for nonconsensual drug testing of pregnant patients, reporting of results to police, and arrest of patients who tested positive on charges of child neglect or distribution of drugs to a minor. Lori Griffin, a patient who went to MUSC for prenatal care, was arrested pursuant to the Interagency Policy when she was eight months pregnant and locked up in the decrepit Charleston County Jail. She was transported weekly from the jail to the hospital for prenatal care in handcuffs and leg shackles. Three weeks after her arrest, she went into labor and was driven, still in handcuffs and shackles, to the hospital. Once at the hospital, she was handcuffed to a bed during the entire delivery [52].
The Interagency Policy resulted in the arrests of more than 40 patients [53], all but one of them black women. Police arrested some patients within days or even hours of giving birth and transferred them to jail in handcuffs and leg shackles. The Interagency Policy was halted five years after its inception, when the National Institutes of Health determined that it constituted an experiment on human subjects, which the hospital had been conducting without federally mandated protections for the women it was testing [54]. In 2001, the US Supreme Court ruled that the policy violated the women’s constitutional right against warrantless searches [55]. Between 1985 and 1995, at least 200 women in 30 states were charged with maternal drug use, the vast majority of whom were poor and black and addicted to crack cocaine [56].
A health problem becomes a crime. How did a health problem—substance use during pregnancy—become a crime? And how did doctors become complicit both in portraying substance use by pregnant patients as a criminal offense and in facilitating their arrest and incarceration? As Roberts has previously shown, doctors made decisions about their pregnant patients within structure-level shifts in cultural representations of maternal drug use, generated by national drug policy, longstanding racial stereotypes, and contemporary media accounts [57]. The identification of a “crack epidemic” in the 1980s coincided with a 1988 study by the National Association for Perinatal Addiction Research and Education that found that 11 percent of newborns in 36 hospitals surveyed were affected by their mothers’ illegal drug use during pregnancy [58]. Policymakers and the media located both problems in black communities and created a panic over gestational crack-cocaine exposure [59].
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The diagnosis of prenatal substance use as a crime worthy of punishment depended on the race of the patients and a long standing, disparaging mythology about black mothers. Attitudes originating in slavery painted black mothers as reckless reproducers whose degeneracy and neglect made them bad mothers [60 63]. In the 1960s, the stereotypical matriarch was held responsible for the disintegration of the black family, and the Reagan Administration promoted the image of the “welfare queen” who bred children just to fatten her welfare check and then wasted the money recklessly on herself.
The pregnant crack addict was added to the iconography of depraved black maternity during the so called crack epidemic that began in the late 1980s. The media depicted mothers addicted to crack cocaine as careless and selfish women who put their love for drugs above concern for their children [64], as indicated by headlines like 1989’s “Crack Babies: The Worst Threat is Mom Herself” [65].
In other words, they were portrayed as the exact opposite of good mothers “promiscuous, uncaring, and self indulgent” [66]. The US media also created the so called “crack baby” typically assumed to be black, although use of crack and other illegal drugs cut across racial categories who was predicted to suffer not only permanent physical damage but to become a social pariah [59, 67]. In fact, medical research has since discredited the stereotypical portrayal of the “crack baby” as scientifically unfounded; researchers simply cannot determine authoritatively which of the many hazards poor black babies confront caused outcomes attributed in prior studies to drugs or negligent mothers [68]. Moreover, recent studies found little difference between poor children who were and were not exposed to crack cocaine in outcomes such as cognitive and language development, pointing to poverty as causing more serious harm [69]. The US media exaggerated the extent and nature of harm crack caused prenatally and erroneously suggested that the problem of maternal drug use was confined to the black community.
Medical professionals also contributed to a false portrait of pregnant crack addicts and their babies. The Wall Street Journal quoted a nurse as saying that “the most remarkable and hideous aspect of crack cocaine seems to be the undermining of the maternal instinct” [70]. Medical journals focused one sided attention on studies showing detrimental outcomes from cocaine exposure. They published four times as many papers concerning prenatal cocaine exposure as had been published concerning the prenatal effects of heroin a decade earlier [71].
The caricature of the crack baby trembling in a tiny hospital bed, permanently brain damaged, and on his way to becoming a criminal supported a punitive approach to the problem of prenatal substance abuse. Legislators, policymakers, and prosecutors transformed a public health problem that affected all racial, ethnic, and socioeconomic groups into a crime resulting from black mothers’ depravity that warranted harsh punishment.
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Structural discrimination. In addition to the structural forces that created the crime of gestational drug exposure, a second structural context helped to determine doctors’ decisions about their pregnant patients. Testing for and reporting of positive infant toxicologies were performed almost exclusively in public hospitals, like MUSC, that served poor minority communities. Private hospitals were less likely to have drug screening protocols and rarely reported their patients to the police. Several studies showed that health care professionals were far more likely to report black women who used drugs during pregnancy than their white patients [72]. A 1990 study in Pinellas County, Florida, for example, discovered that doctors were ten times more likely to report black women than white women to government authorities, despite similar rates of substance use [73].
The racially disparate treatment of prenatal substance use, in turn, helped perpetuate structural inequities. Black mothers’ crack cocaine use became a primary explanation for high rates of black infant mortality, a trend long predating the crack epidemic. Identifying “bad” mothering as the cause of deplorable social conditions diverts attention away from the structural causes of health inequities and the need for social change.
The Clinical Implications of Addressing Race from a Structural Perspective These brief case examples illustrate the complex ways that seemingly clinically relevant “cultural” characteristics and attitudes also reflect structural inequities, medical politics, legal codes, invisible discrimination, and socioeconomic disparities. Black men who appeared schizophrenic to medical practitioners did so in part because of the framing of new diagnostic codes. Lower-income persons who “refused” to eat well or exercise lived in neighborhoods without grocery stores or sidewalks. Black women who seemed to be uniquely harming their children by using crack cocaine while pregnant were victims of racial stereotyping, as well as of a selection bias in which decisions about which patients were reported to law enforcement depended on the racial and economic segregation of prenatal care. In this sense, approaches that attempt to address issues—such as the misdiagnosis of schizophrenia in black men, perceived diet “noncompliance” in minority populations, or the punishment of “crack mothers”—through a heuristic aimed solely at enhancing cross-cultural communication between doctors and patients, though surely well intentioned, will overlook the potentially pathologizing impact of structural factors set in motion long before patients or doctors enter exam rooms.
Structural factors impact majority populations as well as minority ones, and structures of privilege or opulence also influence expressions of illness and health. For instance, in the United States, research suggests that pediatricians disproportionately overdiagnose ADHD in white school-aged children [74]. Until recently, medical researchers in many global locales assumed, wrongly, that eating disorders afflicted only affluent persons [75].
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Yet of late, medicine and medical education have struggled most with addressing ways that structural forces impact and disadvantage communities of color. As sociologist Hannah Bradby rightly explains it,
hypothesizing mechanisms that include the micro processes of interactions between patients and professionals and the macro processes of population level inequalities is a missing step in our reasoning at present…. [A]s long as we see the solution to racism lying only in educating the individual, we fail to address the complexity of racism and risk alienating patients and physicians alike [76].
Imparting Structural Awareness
It is of course the case that many lessons of history are learned only in retrospect. Interventions that arise out of good intentions, such as diagnostic criteria, dietary guidelines, or public-health safety precautions, are only later revealed to enhance structural disparities.
So too, the notion that health or stigma might be addressed by structural engagement has long functioned as common sense in many parts of the world [77, 78]. In the United States, however, an ideological framework centered on “individual choice” and “individual responsibility” often makes attempts to improve health infrastructures or health/race/wealth inequities more difficult [79].
Working to address this inadequacy, US medical and public health schools have recently begun a series of initiatives that attempt to make students aware of the structural components of race, socioeconomics, illness, and health. For instance, Hatzenbuehler, Link, and other public health scholars [16] initiated a series of projects that explore the relationships between “structural stigma and health.” They research how “macro-social” forms of stigma termed “structural stigma” work invisibly to disadvantage stigmatized persons. Quesada, Hart, and Bourgois [80] use anthropological methods to analyze “structural vulnerability” to help physicians identify how political, economic, racial, and gendered social structures or hierarchies produce vulnerability for particular groups of patients.
Metzl’s and Hansen’s formulation of structural competency [5] similarly attempts to elucidate the relationship between the microprocesses of interactions between patients and doctors and the macroprocesses of population level inequalities. Its interdisciplinary theoretical model emerged from a historical study of race and mental illness, brought to bear on medical education more broadly. The common aim of these initiatives is to develop more nuanced ways of identifying forces that influence health outcomes beyond the level of individual behavior and to systematically train health care professionals to take this larger structural context into account when treating patients.
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Concrete Ways for Health Care Professionals to Become More Structurally Competent
Specific steps include:
1. Be skeptical of race based differences in diagnosis. Findings such as the overdiagnosis of schizophrenia in African American men [20] or of neurologic syndromes in Latin American populations [81] were initially held to result from biological differences among “ethnic” groups, only to later be discovered to have social or structural etiologies [82, 83].
2. Create alliances between doctors and other professionals who serve the same vulnerable patients to better address the multiple and entangled structural forces that affect patients’ health. Programs that partner doctors and lawyers, such as the Medical Legal Partnership in Boston, integrate legal assistance as a core component of patient health care to address the complex needs of low income patients and ensure that they can meet their basic needs of food, housing, employment, family stability, and safety [84]. Medical-legal partnerships also “go beyond curing an individual” by working to improve conditions, such as dangerous housing, for entire communities [85]. Similarly, clinician Mindy Fullilove partners doctors with community based organizations, urban planners, and architects to “treat” cities that have been “fractured and wounded” by racial segregation, urban renewal, and redlining policies that discriminate against inner city neighborhoods, with the ultimate aim of creating healthy spaces for use by all city residents [86].
3. Be creative in addressing extraclinical structural problems. For instance, when medical students in Tennessee observed that minority and low income patients failed to comply with instructions to take their medications after meals because they had to travel more than two hours to reach the nearest grocery stores, they created a social enterprise program called Nashville Mobile Market that partnered with community organizations to deliver food and other items to impoverished areas in refrigerated food trucks [87]. So too, Health Leads, an organization founded by Rebecca Onie while she was an undergraduate at Harvard University, provides resource desks in the waiting rooms of urban health centers. At these sites, doctors “prescribe” a wide range of basic resources, like food assistance or heating fuel subsidies, which Health Leads’ volunteers “fill” [88].
4. Learn from social science and humanities disciplines such as sociology, anthropology, history, and critical race theory to be more aware of the ways racism is embedded in institutions and operates apart from the blatant acts of individual bias. As sociologist Eduardo Bonilla Silva notes in his classic Racism Without Racists, seemingly colorblind policies that focus on individuals can leave in place the structural roots of racial inequality [21, 89].
5. Draw lessons from other professions that have taken active steps toward addressing structural racism. For instance, the National Association of Social
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Workers convened a presidential task force subcommittee on institutional racism. The report produced by the subcommittee, “Institutional Racism and The Social Work Profession: A Call to Action,” urged social workers to develop a “knowledge base, theories, and values to understand relevant social issues,” understand historical notions of race and racism, and “look in the mirror” as a means of self reflection [90]. The report ultimately called for a series of short and long term steps aimed at investigating and challenging structural racism, including “dialogue and inclusion/become partners and allies,” “interpersonal capacity and collaboration,” “social work organizations becoming antiracist entities,” and “focus on client, community, and social policy” [90]. Meanwhile, the Grassroots Policy Project produced a workbook for “Dismantling Structural Racism” that includes a guide to “Racial Justice Policy Development” [91]. And the city government of Seattle, Washington, approved funding for “technical assistance” to Seattle’s network of human services agencies to build their capacity to address structural racism [92].
6. Speak up more vocally about structural issues that impact patients politically. In the current US political landscape, the loudest political voices that emerge from medicine are often unfortunately those that argue for dismantling many of the social support networks and infrastructures that ameliorate the effects of structural stigma and racism [93]. Meanwhile, organizations such as Physicians for a National Health Program (PHNP) that speak out against the inadequacies of health insurance and advocate for single payer national health insurance are frequently marginalized. Given this climate, the US vitally needs coherent voices from within medicine to argue for the medical and moral necessity of assuring equitable health and health care for everyone.
Conclusion
In sum, the call for structural competency encourages US medicine to broaden its approach to matters of race and culture so that it might better address both individual level doctor and patient characteristics as well as the “institutional” factors that Carmichael rightly described as potentially “destructive of human life” [7]. Structural competency and other emerging approaches theorize ways to re conceptualize social and economic influences on health so that they can be more effectively addressed by medical practitioners and professional organizations.
Promoting awareness of structural forces serves as a small first step toward recognition of the web of interpersonal networks, environmental factors and political/socioeconomic forces that surround clinical encounters. At the same time, it provides a means of encouraging new forms of coalition between knowledge about diseases and bodies and expert analysis of social systems in ways that, over time, might help put notions of structure at the center of US conceptualizations of the relationships between race, law, economics, illness, and health.
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Jonathan M. Metzl, MD, PhD, is the Frederick B. Rentschler II Professor of Sociology and Medicine, Health, and Society; director of the Center for Medicine, Health, and Society; and a professor of psychiatry at Vanderbilt University in Nashville, Tennessee.
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Dorothy E. Roberts, JD, is the George A. Weiss University Professor of Law and Sociology, the Raymond Pace and Sadie Tanner Mossell Alexander Professor of Civil Rights, a professor of Africana studies, and the director of the Program on Race, Science, and Society at the University of Pennsylvania in Philadelphia.
Acknowledgment
The authors wish to thank Nathan Pauly, Jordan King, and Helena Hansen for their assistance developing this manuscript.
The viewpoints expressed on this site are those of the authors and do not necessarily reflect the views and policies of the AMA.
Copyright 2014 American Medical Association. All rights reserved.
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University of Pennsylvania Carey Law SchoolUniversity of Carey School
Penn Law: Legal Scholarship RepositoryPenn Legal Scholarship Repository
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2012
Debating the Cause of Health Disparities: Implications forDebating the of Health Disparities: Implications for Bioethics and Racial EqualityBioethics and Racial Equality
Dorothy E. Roberts
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ImplicationsforBioethicsandRacialEquality
DOROTHYROBERTS
In2002,thehealtharmoftheNationalAcademyofSciences,theInstituteof Medicine(IOM),scientificallydocumentedwidespreadracialdisparitiesinhealthcareandsuggestedthattheystemmed,atleastinpart,fromphysicianbias.Its 562-pagereport, UnequalTreatment:ConfrontingRacialandEthnicDisparitiesinHealthcare,notedthat,althoughthesedisparitiesareassociatedwithsocioeconomicstatus, themajorityofstudiesitsurveyed‘‘findthatracialandethnicdisparitiesremaineven afteradjustmentforsocioeconomicdifferencesandotherhealthcareaccess-related factors.’’1 AsdirectedbyCongress,theIOMcommitteedefined‘‘disparities’’in healthcareas‘‘racialorethnicdifferencesinthequalityofhealthcarethatarenot duetoaccess-relatedfactorsorclinicalneeds,preferences,andappropriatenessof intervention’’(pp.3–4). UnequalTreatment concludesthat,afterfactoringoutthese access-relateddifferences,remainingdisparitiescanbeattributedinparttodiscriminationbythemedicalprofession—physicianprejudices,biases,orstereotypingoftheirminoritypatients.
Somecommentatorstookoffenseatthereport’schargeofracialbias.Itwas unfair,theyargued,tosuggestthatblatantracialprejudice,aswasdemonstrated intheTuskegeesyphilisexperiment,forexample,stilllingeredincontemporary medicalcare.‘‘Iwouldstressthattheattitudesofphysicianstodayhaveshown atruerevolutionfromthosethatpermeatedthegenerationortwoago,’’wrote UniversityofChicagolawandeconomicsprofessorRichardEpstein.‘‘Itis ashametoattacksomanypeopleofgoodwillonevidencethatadmitsamuch morebenigninterpretation.’’2 The‘‘benign’’interpretationsofferedbycritics werethatracialdisparitiesstemfrompatientbehavior,culturaldifference, biologicaldifference,andeconomicinequality.Eachoftheseexplanationssounds familiartohistoriansofraceandhealthinAmerica.
Althoughracialdisparitiesinhealtharefirmlyestablished,pinpointingtheir causehasbeencontroversial.Inthisarticle,Ichallengerecentclaimsthatracial healthdisparitiesarecausedbyrace-basedgeneticdifferenceorrace-neutral economicdifferenceongroundsthatbothexplanationsignoretherootsofhealth disparitiesinsocialinequality.IdevelopmyargumentbyexaminingthecontroversysurroundingtheInstituteofMedicinereportonracialbiasinhealthcare,
ThisarticleisbasedonmaterialinDorothyRoberts, FatalInvention:HowScience,Politics,andBig BusinessRe-CreateRaceintheTwenty-FirstCentury (NewYork:NewPress,2011)andwassupportedby theNationalScienceFoundationunderGrantNo.0551869,anRWJFInvestigatorAwardinHealth PolicyResearchfromtheRobertWoodJohnsonFoundationinPrinceton,NewJersey,andthe Kirkland&EllisFund.IthankS.J.ChapmanforassistanceinpreparingthisarticleandLundyBraun, AnnetteDula,andJohnR.Stoneforcommentsonanearlierdraft.
CambridgeQuarterlyofHealthcareEthics (2012), 21,332–341. CambridgeUniversityPress2012. 332 doi:10.1017/S0963180112000059
SpecialSection:BioethicsandHealthDisparities
DebatingtheCauseofHealthDisparities
biomedicalresearchonrace-basedgeneticdifference,andadvocacyforBiDil,the firstrace-specificdrugapprovedbytheFoodandDrugAdministration,which assertedthatthetherapyaddressedracialdisparitiesinheartfailure.Iarguethat focusingonrace-neutraleconomicdifferenceorrace-basedgeneticdifference obscuresthesocialinequalitiesthatleadtopoorerhealthamongpeopleofcolor, aswellastheneedforsocialchange.
Race-NeutralEconomicDifference
In TheHealthDisparitiesMyth:DiagnosingtheTreatmentGap,publishedbythe AmericanEnterpriseInstituteinresponsetotheIOMreport,SallySateland JonathanKlickarguethatvariationsininsurancecoverage,medicalpractices, andqualityofphysiciansthatare‘‘correlated’’withracearenotevidenceof racialbiasorinjustice.3 Instead,theystatethatthesearerace-neutralfactorsthat resultininferiorcarethathappensmoreoftentopeoplewhoareblack.They note,forexample,that‘‘asarule,thequalityofcarereceivedbyblacksisinversely relatedtotheconcentrationofblackresidentsinthelocalpopulation’’butcaution that‘‘byfocusingonracewemissaveryimportantcauseofhealth-caredifference: geography.’’4 Intheirview,geographyindependentofracismdeterminesthe qualityofhealthcare,andblackpeoplehappentoliveinlocationswherehealthcareistheworst.
Inmyview,itmakesmoresensetointerpretthegeographyofhealthcareas evidenceofracism:governmentandprivatebusinesshavedevelopedinadequate andinferiorhealthcareresourceswhereblackpeopleareconcentrated.5 Yetprovidingequalaccesstohealthcarewouldnotbeenoughtoclosetheracialdivide. Racialinequalitycauseshealthdisparitiesapartfromblockingaccesstohigh-quality care.Itmakespeopleofcolorsickerinthefirstplace—beforetheygettoadoctor’s officeorahospitalemergencyroom.Accesstohealthcarealonedoesnotdetermine anindividual’shealth,becausehealthis affectedprimarilybythesocialenvironment.Thewaysocietyisorganizeddrivesgroupdisparitiesinhealth.Becausethey reflectsocialinequality,amoreaccuratewordfortheracialgapsishealth inequities AsBritishpublichealthchampionMargaretWhiteheaddefinesthem,health inequitiesare‘‘systematic,sociallyproduced(andthereforemodifiable)andunfair,’’ andresultfromtheunjustdistributionofsocial,economic,political,andenvironmentalconditionsthatdeterminehealth.6
Ithasbeenfirmlyestablishedthatthebestpredictorofhealthisanindividual’s positioninthesocialhierarchy.Hundredsofstudiestrackingthehealthofpeople alongthesocialladdershowthathealthgraduallyworsensasstatusdeclines.7 Inanysociety,peoplewithlowsocioeconomicstatushavepoorerhealththan peoplewithhighersocioeconomicstatus.TheclassicWhitehallStudyofBritish CivilServants,lastingformorethantwodecades,publishedin1978,compared heartdiseaseandmortalityinemployeesatfourcivilservicelevels:administrators, professionalandexecutiveemployees,clericalstaff,andmenialworkers.The studyfoundnotonlythattheadministratorsatthetophadfarbetterhealththan thejanitorsatthebottom,butalsothathealthgotworseandmortalityincreased witheachstepdowntheoccupationalladder.8 Thesesocialgradientsindisease occurreddespiteeveryone’saccesstotheBritishuniversalhealthcaresystem.
Thequestion,then,becomeswhetherthisrelationshipbetweeneconomic inequalityandhealthappliesequallytoAmerica’sglaringracialdisparities.
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Racialinequalityalsoproduceshugegapsinadvantageanddisadvantagethat paralleltherelativehealthofpeopleindifferentracialgroups.Agrowing numberofscientistsfromavarietyofdisciplines,includingmedicine,biology, psychology,anthropology,andepidemiology,areinvestigatinghowracialinequitiesinincome,housing,andeducation,alongwithexperiencesofstigmaand discrimination,translateintobadhealth.Morethanonehundredstudiesnow documenttheadverseeffectsofracialdiscriminationonhealth.9 Threeofthemain biology-relatedpathwaystheseresearchershaveidentifiedarechronicexposureto stress,segregationinunhealthyneighborhoods,andtransmissionofharmsfrom onegenerationtothenextthroughthefetalenvironment.10 Theireffectsonhealth stemspecificallyfromracismthatisseparatefrom,andaddedto,theharmful consequencesoflowersocioeconomicstatus.
Arecentstudyofhealthinaraciallyintegrated,low-incomeneighborhoodof southwestBaltimore,Maryland,highlightedthecausallinkbetweenhealth disparitiesandresidentialsegregation,whichleavesracialgroups‘‘exposedto differenthealthrisksandwithvariableaccesstohealthservicesbasedonwhere theylive.’’11 TheresearchersfoundthatwhenblackandwhiteAmericanslivedin anintegratedsetting,thenationallyreportedgapsinhypertension,diabetes, obesityamongwomen,anduseofhealthserviceseithervanishedorsubstantially narrowed.Theresearchersdidnotinterpretthestudyasshowingthatracial inequalitydoesnotmattertohealthdisparities;rather,theyconcludedthatracial differencesinsocialenvironmentsexplainasignificantportionofthehealth disparitiesrevealedinnationalstatistics.
Theeconomicapproachignorestheroleofresidentialsegregationinmaintaininginequitabletreatmentforblacksandfailstoquestionwhywhiteshavethe privilegeoflivingwherethereisbetteraccesstohigh-qualitycare.Insteadof explainingawayracebyadjustingforthemyriadoffactorsthataddupto inferiorhealthcare,researchersshouldbeaskingwhyitisthatbeingapersonof colorinAmericaislinkedtoallthesenegativefactors.Itisnotbadluck:asthe studiesmentionedpreviouslyshow,blacksandotherminoritiesaresystematicallydeniedaccesstoequaltreatmentandexposedtoconditionsthatareharmfultotheirhealth.Aproposedmarketsolutionwillonlyreproduce—ifnot worsen—disparitiesbasedonrace,becauseitavoidstheneedtoeliminateindividualandinstitutionalbias.
Race-BasedGeneticDifference
Whereastheeconomicexplanationforhealthdisparitiesignorestheimpactof race,anotherexplanationfocusesonraceasabiologicalcategory.Countless researchprojectsatuniversitiesandbiotechfirmsaroundthecountrysearchfor thegeneticcauseofhealthdisparitiesintheUnitedStates.Theyaresupplementingalargebodyofpublishedstudiesthatclaimtoshowthatracialgapsin diseaseprevalenceormortalityarecausedbygeneticdifferences.Disparitiesin asthma,infantmortality,diabetes,cancer,andhypertensionhaveallbeen attributedinthescientificliteraturetogeneticvulnerabilitythatvariesaccording torace.Mostofthesestudiesneverevenexaminedthegenotypesofresearch subjects;theyinferredageneticsourceofracialdifferenceswhentheyfailedtofind anotherexplanation.12
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Consideranefforttoexplaintheenduringblack–whitegapinprematurebirths andlowbirthweight.Ateamofobstetricresearchersexaminedallbirthsin Missouribetween1989and1997totestthehypothesisthat‘‘blackraceindependent ofotherfactorsincreasestheriskofextremepretermbirthanditsfrequencyof recurrence.’’Theresearchersusedstatisticalmethodstocalculatetheindependent influenceofrace,socioeconomicstatus(whetherthemotherwasarecipientof Medicaid,foodstamps,ortheWICprogram),andmaternalmedicalriskfactors suchaslackofprenatalcareandcigarettesmoking.Anarticlepublishedin2007in the AmericanJournalofObstetricsandGynecology reportedthatblackwomenwere morelikelynotonlytodeliverpretermbabiesbutalsotohavepretermbirthsin subsequentpregnancies.Becausethisoverrepresentationoccurredevenwhenthey controlledformedicalandsocioeconomicfactors,theresearchersconcludedthat theirfindings‘‘suggestaprobablegeneticcomponentthatmayunderliethepublic healthproblempresentedbytheracialdisparityinpretermbirth.’’Although concedingthattheymayhaveoverlooked‘‘hiddenvariables’’thatalsocontribute, theyneverthelessspeculatedaboutanunprovengeneticmechanismoperatingin ‘‘theblackrace’’:
Wepostulatethatalthoughpretermbirthisadetrimentaloutcomein pregnancy,itmaybearesultofaselectiveadvantage,conferringinflammatoryprotectionagainstotherdiseaseprocesses.Thisselective advantagephenomenonhasbeenwelldescribedfordiseasesafflicting theblackrace,particularlysicklecelldisease,glucose-6-phosphatedehydrogenasedeficiency,andnitrousoxidesynthasepolymorphismsand theireffectsontheincidenceofmalaria.
Thearticleendedbydownplaying‘‘disparateaccesstomedicalcareorother environmentalfactors,’’arguingthat‘‘ourdatasuggestthattheproposedgenetic componenttopretermbirthmaybeagreateretiologicalcontributorthan previouslyrecognized’’—despitepresentingnogeneticdatawhatsoever.13
Despiteitsweaknesses,theMissouribirthstudywasdignifiedwithapublishedroundtablediscussioninwhichcommentatorsgrantedthat‘‘thegenetic linkisverystrong’’andthatthedisparity‘‘maybestbeexplainedbyagenetic etiology.’’14 Theresearchalsoledtotheheadline‘‘StudyPointstoGeneticsin DisparitiesinPretermBirths’’inthe NewYorkTimes,whichrepeatedthetotally unsubstantiatedconjecturethatprematurebirthsmayprovidesomeevolutionary advantagetoblackwomen.NeilRisch,amolecularbiologistattheUniversityof California–SanFrancisco,criticizedthestudy’sinferenceofageneticcause withouteverexamininggenes.‘‘They’reinferringsomethingisgeneticby eliminationofotherfactors,’’hetoldthe NewYorkTimes.‘‘Butgeneticistsbelieve thattoimplicatesomethingasgeneticrequiresdirectevidence,asopposedto evidenceofabsence.’’15
Untilrecently,virtuallyeverystudyofblackhypertensionacceptedthepremise thatblackshavehigherratesofthediseasethanwhitesbecauseofinherited susceptibility.16 Involumes27through30ofthescientificjournal Hypertension, publishedin1996and1997,thirtyarticleshypothesizedtheexistenceofinnate physiologicaldifferencesbetweenracialgroups.17 Sincethen,theoriesaboutthe precisegeneticmechanismbehindthehypertensiongaparelegion.Authorsof onestudypublishedinthe JournalofHypertension in2000,forexample,‘‘postulate
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thatthegeneticfactorincreasingthepropensityofblackpeopleofsub-Saharan Africandescenttodevelophighbloodpressureistherelativelyhighactivityof creatinekinase,predominantlyinvascularandcardiacmuscletissue.’’18
AlandmarkstudyledbyRichardCoopercontestedtheconventionalwisdom thatblackshaveaninherentpredispositiontohypertension.19 Comparing hypertensionratesaroundtheworld,Cooperanalyzedthreesurveysofblacks fromAfrica,theCaribbean,andtheUnitedStatesandeightsurveysofwhites fromtheUnitedStates,Canada,andEurope.Collectively,thestudiesenrolled 85,000participants.IfAfricanAmericans’higherhypertensionriskweregenetic, wewouldexpectthatpeopleofAfricandescentaremorelikelytohavehigh bloodpressurethanpeopleofEuropeandescent.Instead,afterpoolingtheglobal data,Cooperfoundjusttheopposite.Whitepopulationsonaveragehave asubstantiallyhigherburdenofhypertension.Germanshavethehighest. Nigerianshavethelowest.U.S.whitescomeclosetoblackNigeriansand Jamaicans,whereasU.S.blackscomeclosetowhitesfromEnglandandSpain.
Thewholebodyofgeneticexplanationsforhealthdisparities,boththosethat inferageneticcauseandthosethatidentifyspecificgenes,isquestionable.First, mostofthesestudiessufferfromseriousmethodologicalflaws.Theygroup researchsubjectsintoconventionalracialcategories,failtoexplaintherelationshipbetweenthesesocialcategoriesandgenetictraits,andthenreachconclusionsaboutgeneticdifferenceamongthesubjects.Asurveypublishedinthe JournalofMedicalEthics in2006examined268publishedreportsofgenetic researchthatusedraceasanindependentvariable.20 Theresearchteamfound that72percentofthestudiesfailedtoexplaintheirmethodsforassigningraceto researchsubjects.Despitethisglaringflaw,67percentofthesamestudiesdrew conclusionsassociatinggenetics,healthoutcomes,andrace.
Second,geneticexplanationsforhealthdisparitiesarebasicallyimplausible. Remember,theissueisnotwhethergenesaffecthealth—ofcoursetheydo—but whether geneticdifference explains racialdisparities inhealth.Wewouldexpect socialgroupsthathavebeensystematicallydeprivedforcenturiestohaveworse healththansocialgroupsthathavebeensystematicallyprivileged.Thelogical causeisthesocialdistancebetweenthemandallthewayssocietaladvantageand disadvantageaffectpeople’sexperiences,environments,andaccesstoresources, includinghealthcare.Likewise,itisimplausibleforalargegroupofpeopleas geneticallydiverseasAfricanAmericanstohavesuchaconcentratedgenetic susceptibilitytosomanycommoncomplexdiseases.Amoreplausiblehypothesisgiventhepersistenceofunequalhealthoutcomesalongthesocialmatrixof raceisthattheyarecausedbysocialfactors.
Studiesthatinferageneticcauseforhealthdisparitiestypicallycontrolforthe socioeconomicstatus(SES)oftheresearchsubjectsinanattempttocompare subjectsofdifferentraceswhohavethesameSES.Ifthereremainsadifferencein theprevalenceoroutcomeofadisease,theresearchersattributetheunexplained variationtogeneticdistinctionsbetweenracialgroups.Butthisconclusionsuffers fromabasicmethodologicalerror.Theresearchersfailedtoaccountformany otherunmeasuredfactors,suchastheexperienceofracialdiscriminationor differencesinwealth,notjustincome,thatarerelatedtohealthoutcomesand differbyrace.Anyoneoftheseunmeasuredfactors—andnotgenes—might explainwhythehealthoutcomesvarybyrace.Statisticianscallthistheproblem of‘‘residualconfounding’’:falselyconcludingthatthereisacausalrelationship
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betweentwovariables(here,geneticsanddisparatehealthoutcomes)because othervariablesarenotmeasured.21
Thehypothesisthathealthdisparitiesarecausedbygeneticdifferenceis foundedonamisunderstandingofraceasanaturallycreatedbiologicaldivision insteadofapoliticallyinventedsocialdivision.Understandingraceasapolitical categorythataffectshealthrequireschangingthewaywethinkaboutthe relationshipbetweenraceandbiology.ThomasLaViest,aleadingpublichealth expertatJohnsHopkins,surveyedtheuseofraceinepidemiologicalstudiesin the1990s.HefoundthatmostofthearticlesonU.S.-basedpopulationsdiduse race,butthemostcommonusewasasacontrolvariable—tofilterouttheimpact ofrace.Sowhilegeneticistswerehominginonthebiologicalimpactofrace, epidemiologistswereignoringit.‘‘Whatisneededisnotsimply more researchon race,’’LaViestconcluded,‘‘but better researchonrace.’’22
Thinkingonthisissuetendstofallintotwocamps:eitherraceisasocial categorythathasnothingtodowiththebiologicalcausesofdiseaseorraceis abiologicalcategorythatcausesdifferencesindisease.Bothapproachesfailto graspthewayinwhichraceasasocialgroupingcanaffecthealth—becauseof differentlifeexperiencesbasedonrace,notbecauseofrace-basedgenetic difference.23 AccordingtosociologistTroyDuster,‘‘thetaskistodetermine howthesocialmeaningofracecanaffectbiologicaloutcomes.’’24 Understanding raceasapoliticalcategorydoesnoteraseitsimpactonbiology;instead,it redirectsattentionfromgeneticexplanationstosocialones.
Race-SpecificMedicineasaCureforHealthDisparities
InJune2005,theFoodandDrugAdministration(FDA)announcedahistoric decision:itapprovedthefirstpharmaceuticalindicatedforaspecificrace.25 BiDil,acombinationdrugthatrelaxesthebloodvessels,wasauthorizedtotreat heartfailureinself-identifiedblackpatients.BiDilhadbeentestedintheAfricanAmericanHeartFailureTrial,orA-HeFT,launchedin2001.26 A-HeFTenrolled 1,050subjectssufferingfromadvancedheartfailure,allself-identifiedAfrican Americans.A-HeFTshowedthatBiDilworked;infact,itworkedsospectacularly thatthetrialwasstoppedaheadofschedule.BiDilincreasedsurvivalbyan astonishing43percent.27 Hospitalizationswerereducedby39percent.28 Given evidenceofBiDil’sefficacybutlittleevidencethatracematteredtoitsefficacy,the FDAshouldhavemadeoneoftwodecisions:eitherrejecttherequestforracespecificapprovalorapproveBiDilforallheartfailurepatients,regardlessofrace. Instead,theFDAputraceatthecenterofitsdecision,sparkingcontroversyand pavingthewayforanewgenerationofracialmedicines.
TheFDAexplaineditsdecisiontoapproveBiDilspecificallyforblackpatients bysuggestingthatraceservesasaproxyforsomeunderlyingphysiological differencethatmightbegenetic.InaJanuary2007articlein AnnalsofInternal Medicine,twoFDAscientistswrote,‘‘Wehopethatfurtherresearchelucidatesthe geneticorotherfactorsthatpredicttheusefulnessofhydralazinehydrochlorideisosorbidedinitrate[theingredientsinBiDil].Untilthen,wearepleasedthatone definedgrouphasaccesstoadramaticallylife-prolongingtherapy.’’29 Inother words,araciallydefinedgroupcouldserveasatemporarysubstitutefortheyetundiscoveredgeneticorotherbiologicalfactorthatidentifieswhowillbenefit fromBiDil.30
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SupportersofBiDilcounteredcriticismofitsraciallabelbyarguingthatracespecificmedicineiscriticaltoadvancinghealthbyaddressinghealthdisparities basedonrace.31 Theyclaimthatthehealthbenefitsoutweighthelabel’spowerto reinforceraceasabiologicalcategory.ProminentAfricanAmericanscientists, doctors,andadvocatesendorsedBiDiltoredresspastdiscriminationagainst AfricanAmericansinmedicaltreatmentandaccesstohealthcare.Eversincetheir enslavementintheUnitedStates,AfricanAmericanshavebeenvictimsofboth medicalabuse,suchastheinfamoussyphilisstudyinTuskegee,Alabama,and medicalneglect.32
BiDilsupportersarguedthatarace-specificdrugfulfilled along-standingdemandthatscienceattendtotheparticularneedsofAfrican Americans,whohistoricallyhadbeenexcludedfromgoodmedicalcareand clinicaltrialswhilesufferingdisproportionatelyfromheartdisease.RepresentativeDonnaChristensenimploredtheFDAtoapproveBiDilasaremedyformedicalwrongsagainstAfricanAmericans‘‘forwhomtreatmenthasbeendeniedand deferredfor400years.’’33
Manyusedthehealthdisparitiesasareasontoignorethescientificflawsin race-basedmedicine.GaryPuckrein,executivedirectoroftheNationalMinority HealthMonthFoundation,haschampionedBiDilasanimportantresponseto highratesofheartdiseaseamongAfricanAmericans.Althoughheacknowledged‘‘concernaboutthemedicalandscientificvalidityoftheconceptofrace,’’ hedismissedsuchconcernas‘‘underpresentcircumstances,impractical.’’34
Similarly,KeithFerdinand,chiefscienceofficeroftheAssociationofBlack Cardiologists,wrotethat‘‘racelacksanytruebiologicdefinition,’’35 butBiDilis a‘‘life-savingdrug’’36 thataddresses‘‘evidenceofracialandethnicdifferencesin cardiaccareintheUnitedStateswhichmaysignificantlyaffecthealthoutcomes.’’37 Inotherwords,theseBiDiladvocatesarguethattheurgencyof addressingtheAfricanAmericanhealthcrisiswithrace-specificdrugsoverrides objectionsthatraceisasocialandnotageneticgrouping.
PortrayingBiDilasasolutiontoaracialgapinmortalityimpliesthegapstems fromracialdifferencesindiseaseanddrugresponse.Addingaphysiological explanationforthisdifferenceattributeshealthdisparitiestoflawsinsideblack people’sbodiesratherthantoflawsinthesocietyinwhichtheylive.Itsupports theincreasinglypopularbutmisguidedviewthatthetinypercentageofgenetic differenceamonghumanbeingsisdistributedbyraceandthatthisdifference createsinequitiesinhealth.
GlobalImplications
Thedebateoverthecauseofhealthdisparitieshasglobalimplications. Attributinggapsinhealthbothwithincountriesandamongthemtoeconomic orgeneticdifferencescanobscurethesocialandpoliticalinequalitiesthatleadto poorerhealthamongtheworld’smostdisadvantagedpeople.Perhapsthemost powerfulevidenceoftheimportanceofsocialdeterminantsistherelationship betweenanentirenation’shealthanditslevelofinequality.Numerousstudies trackingthehealthofpeoplealongthesocialladdershowthathealthgradually worsensassocioeconomicstatus,includingrace,declines.38 Intheirrecentbook, TheSpiritLevel,RichardWilkinsonandKatePinkettpresentremarkablyconsistent evidenceof‘‘averystrongtendencyforill-healthandsocialproblems[including reducedlifeexpectancyandinfantmortality]tooccurlessfrequentlyinthemore
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equalcountries.’’39 Ortoputitanotherway,‘‘healthandsocialproblemsare indeedmorecommonincountrieswithbiggerincomeinequalities.’’40 Peoplein Japan,Sweden,andNorwaylivelonger,arelessobese,andhavefewerteenage birthsthanpeopleintheUnitedStates,theUnitedKingdom,andAustralia, becausetheirsocietiesaremoreequal.41
Wemustalsoattendtothestrikingsocialandpoliticalinequalitiesbetween nationstounderstandtheinjusticeofglobalhealthdisparities.Gapsinhealth measuressuchasmortality,qualityoflife,anddiseaseincidenceendureacross nationsdespiteincreasinglevelsofoverallwealth.42 Yetmostmedicalresearchis devotedtotreatingpeopleinthewealthiestcountries,withonlyatinyfraction concernedwithillnessessufferedbypeopleinthedevelopingworld.Indeed, medicalresearchersfromtheUnitedStatesandEuropehavecollectedbiological materialsandtestednewdrugsinthesepoliticallydisadvantagedregions withoutdistributingthebenefitsoftheirresearchequally.43 Seeingglobalhealth inequitiesastheresultofpovertyorunhealthypredispositionsofpopulationsin developingcountrieswillhindereffortstoaddressthepowerimbalancesthat maintainunethicalgapsinhealth.
Conclusion
Thereisalonghistoryofusingabiologicaldefinitionofracetomakesocial inequitiesseemnatural—theresultofinherentdifferenceinsteadofsocietal injustice.AsEvelynnHammondshasnoted,‘‘theappealofastorythatlinksrace tomedicalandscientificprogressisinthewayinwhichitnaturalizesthesocial orderinaraciallystratifiedsocietysuchasours.’’44
Whiletheracialgapinlifeexpectancywidens,45 owinglargelytothegovernment’sfailuretoaddressstructuralinequities,thepoorhealthofAfrican Americansopensnewmarketsforpharmaceuticalcompanies.Theclaimthat race-baseddrugswillshrinkthegapbasedongeneticdifferenceisapowerful waytodeflectconcernsabouttheirunjustsocialimpactandthesocialinequality thatactuallydrivespoorminorityhealth.Atthesametime,acolor-blind perspectiverationalizesthepersistentgapsbetweenwhiteandminorityhealth, wealth,andstatusasproductsofunbiasedmarketoperations,notcontinuing socialinjustice.46
Racialminoritieshavefallenbehindwhitesoneverymeasure, thetheorygoes,asaresultoftheirownfailings,whichmakethemunableto competewithwhitesinpurportedlyfairsocial,political,andeconomicarenas. Color-blindideologypositsthatbecauseracismnolongerimpedesminority progress,thereisnoneedforsocialpoliciestoaccountforrace.Bothofthese approaches—race-neutraleconomicsandrace-specificgenetics—areatplayin explanationsforhealthdisparities.Itiscriticaltocontesttheseargumentsin ordertotackletherootsofhealthdisparitiesinsocialinequalitybasedonrace andtoseetheneedforsocialchange.
Notes
1.SmedleyBD,StithAY,NelsonAR,eds. UnequalTreatment:ConfrontingRacialandEthnicDisparities inHealthCare.Washington,DC:NationalAcademyPress;2003,at5.
2.EpsteinRA.Disparitiesanddiscriminationinhealthcarecoverage:AcritiqueoftheInstituteof Medicinestudy. PerspectivesinBiologyandMedicine 2005;48:S26–S41,atS40.
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