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Racial and Ethnic Disparities in Healthcare: A Background and History W. Michael Byrd, M.D., M.P.H. Linda A. Clayton, M.D., M.P.H.1 Division of Public Health Practice Harvard School of Public Health INTRODUCTION Despite steady improvement in the overall health of the United States’ population, the health of America’s racial and ethnic minorities varies from the mainstream. For example, the health status of African Ameri- cans—a racial-ethnic group already burdened with deep and persistent history-based health disparities—has been recently characterized as stag- nant or deteriorating (Byrd and Clayton, 2000, 2002; Collins, Hall, and Neuhaus, 1999; National Center for Health Statistics, 1998a; Sullivan, 2000; Williams, 1999). A body of nearly 600 scientific publications documenting racial and ethnic disparities in healthcare provides ample evidence of this problem (Geiger, 2000; Mayberry, Mili, and Ofili, 2000). Though it is well known that these disparities reflect socioeconomic differences and inad- equate access to quality healthcare, contemporary evidence suggests that in addition to racial, ethnic, class, and gender bias, direct and indirect dis- crimination are also important factors (Geiger, 2000; Mayberry, Mili, and Ofili, 2000; U.S. Commission on Civil Rights, 1999a, 1999b; Williams, 1999). Following the lead of the legislation and committee reports, this Insti- tute of Medicine (IOM) study is one part of a multifaceted effort by the United States Congress to understand and eliminate racial and ethnic dis- parities in healthcare. The IOM report explores, analyzes, and offers cor- rective action for factors linked to racial and ethnic health and healthcare 1 The authors extend their appreciation to Joe Feagin, Ph.D., Augustus A. White III, M.D., Ph.D., and Ricardo Guthrie, M.A., who served as consultants on this paper. 455
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456 UNEQUAL TREATMENT disparities, including American racial, ethnic, and immigrant relations; “racism;” “historic racial discrimination” and bias; biased clinical deci- sion-making; a health system structured on the basis of race, ethnicity, and class; and access barriers caused by shortages of racial and ethnic minority providers (Byrd and Clayton, 2000, 2002; Section of House Committee Report to Accompany H.R. 3064, 2000; Sullivan, 2000). Differences in population characteristics such as race, ethnicity, class, culture, and gender are at the root of many of the present health and health system problems in the United States. From the perspective of racial and ethnic relations, such differences have generated group identities and self- awareness, racial mythology, group interaction, stereotyping, competi- tion, conflict, a corpus of critical theory, accommodation, and in some instances, assimilation and integration. A number of academic disciplines and formidable bodies of scientific literature have grown around each of these subjects and in many instances African Americans serve as surro- gates for racial and ethnic minority groups in the United States. This is not only by design, but based on the fact the overwhelming majority of the research, published literature, and data on racial and ethnic disparities before 1985 was focused on that group. Moreover, the chronicle of Afri- can Americans, alongside Native Americans, epitomizes the depth, breadth, and intensity of the American racial and ethnic minority experi- ence (Burns and Ades, 1995; Byrd and Clayton, 2000, 2001a, 2002; Feagin and Feagin, 1999; Outlaw, 1990; Smedley, 1999; Stuart, 1987). Though viewed by many as recent occurrences, racial- and ethnic- based health disparities are centuries-old phenomena. They are outcomes that reflect medical-social values and policies in Western (and later U.S.) medicine and healthcare, which paralleled the values and policies in the larger societies. Could it be that these differences, and the biases and dis- crimination they both generated and reflected, have dictated or even dis- torted how the U.S. health system functions? If so, what are the character- istics and profile of this dysfunction? What are the origins, bases, and evolution of the biases and inequities that contribute to persistent racial and ethnic health and healthcare disparities? Their persistence represents a major challenge and an affront to the genius of the American health system, while serving as the driving force behind this IOM study. As we acquire the knowledge to begin answering these questions, we can start to understand the nature of the problems, to perform objective analyses, and, eventually, to craft fact-based, logical interventions and solutions for the problems (Byrd and Clayton, 2000, 2001a, 2002; Feagin and Feagin, 1999; Section of House Committee Report to Accompany H.R. 3064, 2000; Smedley, 1999; The Healthcare Fairness Act of 1999, 1999; U.S. Department of Health and Human Services, 1985a).
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457 RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE It is clear that health and healthcare in the United States are multi- racial, multi-ethnic, immigrant stories. A brief examination of racial and ethnic relations in this country from its colonial past to the present provides the context for the larger examination of health and health- care as social processes and problems. And since virtually all modern health policy decisions are based on the collection of accurate demo- graphic, health, and health-related data, it is essential to have a better understanding as to how data regarding America’s various racial and ethnic groups are collected. An examination of the intricacies of the process, its standardization, and its evolutionary phases is both a pre- requisite and a necessity, especially as it has related to health and healthcare. A factual chronology about data and its collection is pro- vided in order to appreciate and learn from the past experiences, to dispel assumptions and mythologies, and as a preparation for future fact-based policy-making. America is a nation of immigrants. A discussion built around appreci- ating the nation’s health experience as an immigrant story, thus, provides a window on the present racial and ethnic health disparities. Following is an examination of the major U.S. racial and ethnic groups, both European and people of color, focusing on their health and the variables that affect their health. This lends a broader and much needed health policy per- spective on where we have been and where we need to go. Recurrent themes resonate throughout the document. For example, as racial and ethnic minorities become larger percentages of our total population, the health and healthcare of minority Americans become na- tional public policy issues of the first rank—in both relative and absolute terms. Another theme is that healthcare is presently conceptualized as a human right. Obtaining a background regarding the roles of race, ethnicity, gender, culture, and class in U.S. society and healthcare is requisite to deciphering the message inherent in the racial and ethnic health and healthcare dis- parities. In order to acquire a deeper understanding of the present racial and ethnic health and healthcare disparities, one must gain an under- standing of the origins, evolution, and perpetuation of racial and ethnic bias, inequities, and disparities in health and healthcare in the United States and its earlier Western predecessor cultures. Because of the varia- tion in opinions and usage of certain terms emanating from this wide range of disciplines, a glossary has been included that contains terms the IOM Committee thought would be useful to readers (Byrd and Clayton, 2000, 2001a; Feagin and Feagin, 1999; Fee, 1997; Fluss, 1997; Section of House Committee Report to Accompany H.R. 3064, 2000; The Healthcare Fairness Act of 1999, 1999).
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458 UNEQUAL TREATMENT American Racial and Ethnic Relations: The Context Racial and ethnic diversity is a basic tenet in the evolution of this society. Neither health nor healthcare is an exception. “The development of social and economic inequalities based on race and ethnicity has been a central theme—and a central dilemma—of the history of the United States [and the Western World], shaped over many generations by the European conquest of indigenous peoples and by massive waves of both coerced and uncoerced immigration from all over the world” (Pedraza and Rumbaut, 1996, xvi). Moreover, racial and ethnic relations have al- ways been tumultuous in the United States. The use of terms such as dominant group and subordinate group in the study of American racial and ethnic relations suggest—and has often been linked to—racial and eth- nic hierarchy, stratification and substantial inequality among groups. Disparate outcomes between European Americans and racial and ethnic minority Americans in many spheres of social life, health, and health- care—as all are viewed as social processes—are not new and should not be unexpected (Byrd and Clayton, 2000, 2001a, 2002; Feagin and Feagin, 1999; Jaco, 1979; Kosa and Zola, 1975; Pedraza and Rumbaut, 1996; Smedley, 1999). Founded more than 200 years ago after a revolution that cut colonial ties with Europe, the creation of the United States was based on Enlightenment principles of freedom and equality. A vigorous nation of great racial and ethnic diversity emerged. However, racial and ethnic prejudices, biases, oppression, and conflict were embedded in the colonial antecedents, the founding period, and central documents of the new republic (Brinkley, 1993; Feagin, 2000; Omi and Winant, 1994). Fur- ther, as Rumbaut notes, “[I]mmigration and conquest—by hook or by crook—have been the originating processes by which American ethnic groups have been formed and through which, over time, the United States itself has been transformed into arguably the world’s most ethni- cally diverse society” (Pedraza and Rumbaut, 1996, xvi). The European (predominantly English) colonists often took land from Native Ameri- cans (American Indians) by force or collusion. By the late-seventeenth century, the colonists had established an economy strongly based in African-American chattel slavery in the South and on the slave trade in the North. Moreover, throughout succeeding centuries a tradition of oppressing non-English (e.g., Irish and Italian) and non-European (e.g., Chinese, Japanese, and Mexican American) immigrants was also estab- lished (Brinkley, 1993; Burns and Ades, 1995; Feagin, 2000; Feagin and Feagin, 1999; Stuart, 1987). At first, liberty and justice were provided only for males of British descent, and inequality in life chances along racial, gender and ethnic lines became a fundamental fact of the new nation’s institutions. As Flexner observed, “Whatever their social station,
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459 RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE under English common law, which became increasingly predominant in the colonies . . . women had many duties, but few rights” (1975, 7). Con- flict between Anglo-Protestant Americans and Indians varied from out- right warfare to separate coexistence. Though the promotion of non- English immigration had coincided with English mercantile and colonial aims and intensified in the nineteenth century, new white immigrants (“foreigners”) often met hostility and found themselves less than equal socially or under law. Women struggled continuously for their rights (Flexner, 1975). Racial tension and conflict was a constant between Anglo-Protestant Americans and African Americans under 246 years of brutal and exploitive chattel slavery, followed by 100 years of social segregation, physical oppression, political subjugation, and economic exploitation. As English domination was modified over the next two centuries by the challenges and occasional ascendancy of other northern Europeans, southern, and eastern Europeans as well as other non-Euro- pean groups trying to move up socially, economically, and politically, the United States became an unprecedented and uneasy mix of diverse peoples (Brinkley, 1993; Burns and Ades, 1995; Feagin, 2000; Feagin and Feagin, 1999; Omi and Winant, 1994; Shipler, 1997; Stuart, 1987). Basic documents of the new republic reflect its patterns of racial sub- ordination, ethnic discrimination, and gender difference. Neither the Articles of Confederation, nor the Declaration of Independence, nor the Naturalization Law of 1790 extended the doctrines of freedom and equal- ity to African Americans (Brinkley, 1993; Feagin and Feagin, 1999; Omi and Winant, 1994). One provision of the Naturalization Law of 1790 was that only “white” persons could become citizens (Takaki, 1993, 273). After a failed campaign by southern slaveholders to count black slaves for ap- portioning states’ legislative representation though not for direct taxation (Brinkley, 1993, 150), enslaved Americans were counted as three-fifths of a person in the U.S. Constitution. Women were not allowed suffrage until 1920, Native Americans until 1924, and most African Americans until 1965. First-generation Asian Americans could not become U.S. citizens until 1952 (Brinkley, 1993, 576-577, 816; Feagin and Feagin, 1999, 209, 391; Office of Research on Women’s Health, 1998, 17). Slavery was not only legal with blacks designated as chattel, the slave trade was allowed to continue until 1808, and a fugitive slave provision was incorporated by the 1850s that required the return of runaways to their owners. Neither the Declaration of Independence’s famous statement that “all men are cre- ated equal” nor the Constitution’s Bill of Rights applied to African Ameri- cans (Higginbotham, 1978, 1996). The Alien, Sedition, and Naturalization Acts compromised the rights and citizenship status of immigrants as early as the late 1700s and early 1800s. The Page Act of 1875 restricted the immi- gration of Chinese women, while the Chinese Exclusion Act of 1882 pro-
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460 UNEQUAL TREATMENT hibited the group as a whole (Brinkley, 1993; Feagin, 2000; Feagin and Feagin, 1999; Takaki, 1993). By adopting the English language and accommodating to English- oriented institutions, white non-British immigrant groups have gained substantial power and status in the United States. However, voluntary and involuntary immigrants from Africa, Asia, and Latin America, as well as Native Americans have remained subordinate to white Americans in political, cultural, and in most instances, economic terms. For example, despite their arrival as agricultural laborers recruited in the 1880s, Japa- nese Americans could not become naturalized citizens until the passage of the McCarran-Walter Act of 1952 (Omi and Winant, 1994, 81). Though racial and ethnic diversity, inequality, and oppression continue to be part of the foundation of U.S. society, Americans of color continue to challenge their subordinate status (Feagin and Feagin, 1999; Omi and Winant, 1994). In many ways, the continuing story of racial, ethnic, class, and gender biases and conflicts in the United States is evidence of the system’s dyna- mism—the promises and sorrows of the American dream. America’s troubled past has profoundly affected its health system. Likewise, the poor health status and outcomes of African American and other minority popu- lations are inextricably linked to historical racial and ethnic discrimina- tion (Byrd and Clayton, 2000, 2001b, 2002; Stuart, 1987; Williams, 1999). If current demographic trends continue and people of color become the majority of the U.S. population by the middle of the twenty-first century, dramatic institutional changes will be necessary—including changes within the nation’s health system (Brinkley, 1993; Byrd and Clayton, 2000, 2001a, 2002; Collins, Hall, and Neuhaus, 1999; Feagin, 2000; Feagin and Feagin, 1999). Racial and Ethnic Data Collection and Definitions Racial and ethnic minority groups are among the more difficult de- mographic categories to categorize because there is no simple scheme for defining these groups or classifying the categories’ subgroups (U.S. De- partment of Health and Human Services, 1985a). As will be discussed later, attempts at categorization are further complicated by the complex histories and chronologic layers of definitions and classifications related to racial and ethnic concepts in Western culture (Byrd and Clayton, 2000, 2002; Smedley, 1999). Imprecise and changing definitions of race and ethnicity emanating from the federal government, anthropologists and other social scientists further complicate the issue of definitive categories or classifications (American Anthropological Association, 1997; Thernstrom, Orlov, and Handlin, 1980; Zenner, 1996). Nevertheless, in order to assess the health status, outcomes, and services utilization of vari-
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461 RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE ous racial and ethnic groups in the United States, data must be collected with some type of category system. Although current data collection sys- tems are both imprecise and do not adequately collect data for all the important U.S. racial or ethnic minority groups, the federal government does attempt to perform this task in a systematic manner (U.S. Office of Management and Budget, 1997). The U.S. government provides a standard classification system for record keeping, collection, and presentation of data on race and ethnicity in federal program administrative reporting and statistical activities. The five racial and two ethnic categories are: American Indian or Alaskan Native, Asian, Native Hawaiian or Pacific Islander, Black, White, Hispanic or Latino, Not Hispanic or Latino [Box 1-1, Introduction, this volume], and originate from a 1977 Office of Management report (Haynes and Smedley, 1999). Depending on the data source, these racial or ethnic clas- sifications are based on self-classification or on observation by an inter- viewer or other person filling out the questionnaire (National Center for Health Statistics, 2000). Before 1980, the National Vital Statistics System for newborn infants and fetal deaths tabulated the race of the fetus or newborn according to the race of both parents. If the parents were of different races and one parent was White, the child was classified according to the race of the other parent. When neither parent was White, the child was classified according to the father’s race, with one exception: if either parent was Hawaiian, the child was classified as Hawaiian. Since 1989, newborn in- fants and fetal deaths are tabulated according to the race of the mother (National Center for Health Statistics, 1998a). In spite of these efforts, most existing sources of health data, with the exception of those derived from the census and from the vital registration system (birth and death certifi- cates), permit examination of only the three largest racial and ethnic cat- egories: non-Hispanic White persons, non-Hispanic Black persons, and persons of Hispanic or Mexican origin (National Center for Health Statis- tics, 2000). The gathering of racial data by the U.S. Census Bureau is symbolic of its centrality in the nation’s culture (Omi and Winant, 1994). As the U.S. health system developed, these data sets profoundly affected health policy and health services delivery. Race has been such an important character- istic in this country that census takers have tallied the racial composition of the population since the first U.S. Census taken in 1790: “[T]he U.S. Census has always included a question about race. Whites were normally distinguished from nonwhites” (Thernstrom, Orlov, and Handlin, 1980, 869). However, “[t]he racial categories used in census enumeration have varied widely from decade to decade” (Omi and Winant, 1994, 3). Until the 1850 census, African Americans were tabulated as either “Slave” or
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462 UNEQUAL TREATMENT “Free Colored,” with the latter term sometimes including detribalized Native Americans. Though the 1850 and 1860 censuses collected data for free persons in “White,” “Black,” or “Mulatto” categories, the main tables continued to designate the overall population as “White,” “Slave,” and “Free Colored.” The 1860 census also counted “Civilized Indians” (who were required to pay taxes because they did not live on reservations) and Chinese. In 1870, Japanese were added, and the “Civilized Indian” cat- egory was divided into “Pure Indians” and “Half-breeds” designations. The first reliable statistics tabulated for Native Americans “are those for 1890, the year in which the Bureau of the Census and Bureau of Indian Affairs made a concerted effort to report accurately the Indian population and the occurrence of vital events” (Stuart, 1987, 96). Census Bureau offi- cials grouped mulattos with Negroes under “Colored” in 1880, but made finer distinctions in 1890, counting 6.3 million Negroes, 957,000 mulattos, 105,000 quadroons, and 70,000 octoroons. Finally admitting these divi- sions were valueless for analytical purposes, they grouped them all to- gether with the Chinese, Japanese, and Indians under the general heading “Colored” (Thernstrom, Orlov, and Handlin, 1980). In 1900, under the growing influence of anthropological notions of race, census officers were determined to assess the U.S. population in terms of the then-presumed four great races: Caucasian or White, Negro or Black, Mongolian or Yellow, and Indian or Red. Chinese and Japanese were designated subdivisions of Mongolian, and it was finally decided to use the term Negro and abandon the ambiguous term “Colored.” * By 1910 census officials reverted to “Black” and “Mulatto” but avoided the term “Colored.” The main divisions were “White,” “Negro,” “Indian,” “Chi- nese,” “Japanese,” and “All Other” (including subdivisions for Hawai- ians, part-Hawaiians, and other races). The Indian population was treated separately in a special census recording both the “civilized” and those residing on reservations, and provided details on tribes, languages and geographic areas. This set many precedents for modern censuses. Mexi- cans were put in the “Other Races” category in 1930 but were later counted as Whites. Other Asian and Pacific Islander subgroups were tabulated, but appeared only in general tables. Enumerators in 1960 were instructed to consider how the person or family identified itself, and in 1970 self- identification was introduced into racial and ethnic tabulations (Thern- strom, Orlov, and Handlin, 1980). Ethnicity is a much more recent concept. As a response to the general movement toward self-identification and the modern notions of a plural- * While the 1890 Census had used the term “Colored” to mean all nonwhite persons, in the West Indies it meant part-European, part-Negro, and in the earlier censuses, in some south- ern states, and in some other countries it meant anyone with a Negro ancestor.
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463 RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE istic democratic society, the ethnic-origin category was introduced in the Current Population Survey in 1969 and included in the U.S. Census in 1980. However, there are difficulties with this mode of distinguishing races and ethnic origin, including sampling variation, changes in respon- dent fashion, and the difficulties of handling racial and ethnic mixtures. These issues are yet to be resolved (Haynes and Smedley, 1999; National Center for Health Statistics, 2000; Thernstrom, Orlov, and Handlin, 1980). The 1997 standards have five racial groups: American Indian or Alaska Native, Asian, Black or African American, Native Hawaiian or Pacific Is- lander, and White, all of which continue to offer possibilities for confu- sion and complexity. Respondents are able to select more than one of the five groups, which sometimes diminishes sample size, creates ambiguous results, and increases the likelihood of not meeting the standards for sta- tistical reliability or confidentiality. All federal data systems are required to be compliant with this system by 2003 (National Center for Health Sta- tistics, 2000). Whether or not one is of Hispanic origin reflects another dimension, because the U.S. Census Bureau reiterates, “Hispanics are clas- sified as an ethnicity, not as a race. People of Hispanic origin, therefore, may be of any race” (U.S. Census Bureau, 2001a). Therefore, the Office of Management and Budget outlines a more complex “combined format” whose minimum acceptable categories are: American Indian or Alaskan [sic] Native; Asian or Pacific Islander; Black, not of Hispanic origin; His- panic; or White, not of Hispanic origin (Haynes and Smedley, 1999). Distinguishing racial and ethnic groups from one another is useful in medi- cal, health services, and epidemiologic research, provided that researchers are clear on the nature and source of human variation (e.g., cultural and behavioral pat- terns, environmental influences) and their relationship to health outcomes. Race and ethnicity affect factors as varied as disease rates, health behaviors, concep- tions of well-being and attitudes toward health maintenance and home treatment, illness behavior, utilizations patterns, concepts of disease and illness, interac- tions with mainstream health professionals and organizations, and ethnic inter- est groups and medical delivery (Harwood, 1981). Using such information applicable to distinct groups could direct appropriate and efficient bio- medical and health services research, focus health promotion disease pre- vention efforts, objectively redirect health services and restructure com- ponents of the health system, and guide diversity and cultural competence programs. However, if the “boundaries” of ethnic identity remain unclear, continue to be perceived as more flexible rather than rigid, become agents to defocus and fragment the nation’s health policy and political mecha- nisms, all compounded by increased numbers of mixed ethnicity families in this country (where individuals claim two or more ethnicities), the chal- lenge of pluralistic ethnic-oriented data collection, analysis, research, and program creation remains daunting. As we develop the methodology and
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464 UNEQUAL TREATMENT science of tracking racial and ethnic health and healthcare outcomes, ur- gent efforts should be directed toward eliminating racial and ethnic bias in the caregivers and re-educating both caregivers and patients to elimi- nate stereotyping, conscious, and unconscious biases. In the interim, there can be no delay in making recommendations leading to: 1) patient and provider education to understand the existence and dynamics of racial and ethnic bias in the healthcare arena; 2) programs at all levels teaching the dynamics of the stereotyping and the bias-producing processes and how they affect healthcare; and 3) the development of measures to teach patients and providers the specific cultural competence, diversity and cross-cultural skills to maximize the benefits of the doctor-patient rela- tionship (Haynes and Smedley, 1999; White, Rutledge, and Brown, 2000; Zenner, 1996). Immigration, Racial and Ethnic Groups, Health and Healthcare Racial and ethnic groups are viewed today as by-products of social pro- cesses such as immigration, group interaction and conflict, group hierar- chies and dominance, acculturation, and assimilation (Feagin and Feagin, 1999; Pedraza and Rumbaut, 1996). Acknowledgment of the effects of racial and ethnic problems on health and disease, the health professions, and, finally, the health system is new and indicative of an ongoing contempo- rary cultural movement among liberal democratic governments worldwide. These social dimensions of health and healthcare delivery serve as markers of a growing awareness, critique, examination, and redirection that is fi- nally committed to the notion of embracing all of the nation’s diversity (Byrd and Clayton, 2000, 2001a, 2002; Glazer, 1997; The Healthcare Fairness Act of 1999, 1999; Section of House Committee Report to Accompany H.R. 3064; Taylor et al., 1994). The World Health Organization has defined health as “. . . a complete state of physical, mental, and social well-being and not merely the absence of disease or infirmity” (Sutchfield and Keck, 1997, 3), and has proclaimed that “health [without qualification] is a human right” (Fluss, 1997, 377). These declarations, which are evidence of the fact that health is viewed as a universal human need—a “primary good,” along with income, education, religious freedom, freedom of conscience, speech, press, and association, due process, the right to vote, and the right to hold office— are givens (Taylor et al., 1994, 4). Another corollary of this ongoing reas- sessment is that American health and healthcare are increasingly being viewed as immigrant, multicultural, racial, and ethnic minority stories with biomedical, medical historical, sociocultural and political, public health, health policy, and medical-social dimensions (Table 1). This is why a brief overview of North American health and healthcare from racial, ethnic, and immigration perspectives is germane to this dis-
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465 RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE cussion (Byrd and Clayton, 2000, 2001a, 2002; Fluss, 1997; Garrett, 2000; Malone and Johnson, 1986; U.S. Commission on Civil Rights, 1999a, 1999b). Native Americans, North America’s original racial/ethnic group, are the indigenous people of the land now occupied by the United States. Scholarship concerning their fifteenth through twenty-first century inter- face with European explorers and invaders, the backdrop for America’s racial and ethnic immigrant saga, is growing exponentially. It is becom- ing clear that health factors such as disease transmission, epidemics, and exposures of non-immune populations to new diseases had as much to do with early group interaction and eventual European dominance of New World, pre-Columbian (North, Central, and South American) people as to political and military activity (Burns and Ades, 1995; Byrd and Clayton, 2000, 2002; Diamond, 1999; Stannard, 1992; Watts, 1997). We know that the 105 years between Columbus’s landfall in the Car- ibbean and English colonization in 1607 had profound health effects in North America. Sixteenth-century Spanish colonies spreading from the Caribbean, South America, Mesoamerica (central and southern Mexico and adjacent areas of Central America), Mexico, and St. Augustine, Florida, bolstered by expeditions deep into North America itself, facili- tated the spread of Old World diseases that greatly reduced American Indian populations. The resulting depopulation may have contributed to the myth of an “empty” American continent ripe for European settlement (Byrd and Clayton, 2000; Diamond, 1999; Watts, 1997). Not only does the Native American health experience serve as the opening chapter of the North American chronicle of racial and ethnic health, American Indian health and healthcare have been major factors shaping both their demogra- phy and their contact with Europeans. Prior to 1492, native people in the New World had few serious diseases compared with people of the Old World (Diamond, 1999; Pedraza and Rumbaut, 1996; Watts, 1997). Iso- lated from the Old World’s domesticated animals * and diseases such as smallpox, influenza, measles, typhus, malaria, leprosy, cholera, bubonic plague, gonorrhea, and chancroid—even New World exposure to viru- lent forms of tuberculosis or syphilis is questionable—95 percent of the 8 to 12 million Native Americans inhabiting the North American continent at that time succumbed to European conquests, politics, and diseases (Dia- mond, 1999; Pedraza and Rumbaut, 1996; Stannard, 1992; Watts, 1997). By * Though it is not fully understood, the origins of the germs (bacteria, viruses, etc.) caus- ing many human diseases can be traced to many animals domesticated in the Old World, such as pigs, cows, horses, sheep, and goats. SOURCES: Diamond J. Guns, Germs, and Steel: The Fates of Human Societies. Paperback Edition. New York: W.W. Norton and Company, Inc., 1999; Pedraza S, Rumbaut RG. Origins and Destinies: Immigration, Race, and Ethnicity in America. Belmont, California: Wadsworth Publishing Company, 1996.
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520 UNEQUAL TREATMENT Trennert RA. 1998. White Man’s Medicine: Government Doctors and the Navajo, 1863-1955. Al- buquerque: University of New Mexico Press. Tucker WH. 1994. The Science and Politics of Racial Research. Urbana, Illinois: University of Illinois Press. U.S. Bureau of the Census. 1975. Historical Statistics of the United States, Colonial Times to 1970, Bicentennial Edition, Parts 1 and 2. Washington, DC: U.S. Government Printing Office. U.S. Census Bureau. 2001a. National population estimates by nativity. Washington, DC: U.S. Census Bureau, http://www.census.gov/population/www/estimates/ us_nativity.html, March 21, 2001. U.S. Census Bureau. 2001b. Population estimates of the United States by sex, race, and His- panic origin. Washington, DC: U.S. Census Bureau, http://www.census.gov/popula- tion/www/estimates/us_nativity.html, March 21, 2001. U.S. Census Bureau. 2001c. Poverty: 1999 highlights. Washington, DC: U.S. Census Bureau, http://www.census.gov/hhes/poverty/poverty99/pov99hi.html, March 24, 2001. U.S. Census Bureau. 2001d. Poverty 1999—graphs. Washington, DC: U.S. Census Bureau, http://www.census.gov/hhes/poverty/poverty99/povrac99.html, March 24, 2001. U.S. Census Bureau. 2001e. Young African Americans boost high-school completion rate, Census Bureau reports. Washington, DC: U.S. Census Bureau, http://www.census.gov/ Press-Release/cb98-106.html, March 24, 2001. U.S. Census Bureau. 2001f. Income inequality (middle class)—narrative. Washington, DC: U.S. Census Bureau, http://www.census.gov/hhes/income/midclass/midclsan.html, March 24, 2001. U.S. Census Bureau. 2001g. Income 1998—Graph of median household income. Washing- ton, DC: U.S. Census Bureau, http://www.census.gov/hhes/income/income98/ incxrace. html, March 23, 2001. U.S. Commission on Civil Rights. 1999a. The Health Care Challenge: Acknowledging Disparity, Confronting Discrimination, and Ensuring Equality. Vol. 1. The Role of Governmental and Private Health Care Programs and Initiatives. Washington, DC: U.S. Commission on Civil Rights. U.S. Commission on Civil Rights. 1999b. The Health Care Challenge: Acknowledging Disparity, Confronting Discrimination, and Ensuring Equality. Vol. 2. The Role of Federal Civil Rights Enforcement Efforts. Washington, DC: U.S. Commission on Civil Rights. U.S. Department of Health and Human Services. 1985a. Health Status of Minorities and Low Income Groups. Washington, DC: U.S. Government Printing Office. U.S. Department of Health and Human Services. 1985b. Report of the Secretary’s Task Force on Black and Minority Health. Vol. 1. Executive Summary. Washington, DC: U.S. Govern- ment Printing Office. U.S. Department of Health and Human Services. 1986a. Report of the Secretary’s Task Force on Black and Minority Health. Vol. 3. Cancer. Washington, DC: U.S. Government Printing Office, January. U.S. Department of Health and Human Services. 1986b. Report of the Secretary’s Task Force on Black and Minority Health. Vol. 4. Cardiovascular and Cerebrovascular Diseases. Part 1. Washington, DC: U.S. Government Printing Office, January. U.S. Department of Health and Human Services. 2000. Health United States, 2000. U.S. Gov- ernment Printing Office. Washington DC. U.S. Office of Management and Budget. 1997. Revisions to the Standards for the Classifica- tion of Federal data on Race and Ethnicity, Federal Register 62 (131):36847-36946, July 9. Van Ausdale D, Feagin JR. 2001. The First R: How Children Learn Race and Racism. Rowman and Littlefield Publishers, Inc. Van den Berghe PL. 1967. Race and Racism: A Comparative Perspective. New York: Wiley. Veatch RM. 1981. A Theory of Medical Ethics. New York: Basic Books, Inc.
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521 RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE Viner, Russell. 1998. Abraham Jacobi and German medical radicalism in antebellum New York. Bull Hist Med 72:434-463. Vogel MJ. 1980. The Invention of the Modern Hospital: Boston 1870-1930. Chicago: The Univer- sity of Chicago Press. Vogel MJ. 1985. Patrons, practitioners, and patients: The voluntary hospital in mid-Victorian Boston. 287-297. In: Leavitt JW, Numbers RL, eds. Sickness and Health in America: Read- ings in the History of Medicine and Public Health. Madison, Wisconsin: The University of Wisconsin Press. Walsh MR. 1977. Doctors Wanted No Women Need Apply: Sexual Barriers in the Medical Profes- sion, 1835-1975. New Haven, Connecticut: Yale University Press. Washington HA. 1994a. Of men and mice: Human guinea pigs: Unethical testing targets Blacks and the poor. Emerge (October, No. 1): 6:24. Washington HA. 1994b. Henrietta Lacks—-An unsung hero. Emerge (October, No. 1): 6:29. Wasserman HP. 1974. Ethnic Pigmentation: Historical, Psychological, and Clinical Aspects. New York: American Elsevier Publishing Company. Watts S. 1997. Epidemics and History: Disease, Power and Imperialism. New Haven: Yale Uni- versity Press. Wear A, ed. 1992. Medicine in Society: Historical Essays. Cambridge: Cambridge University Press. Weisbord RG. 1975. Genocide? Birth Control and the Black American. Westport, Connecticut: Greenwood Press. Welsome E. 1999. The Plutonium Files: America’s Secret Medical Experiments in the Cold War. New York: The Dial Press. West C. 1994. Race Matters. Boston: Beacon Press, 1993. Paperback Reprint Edition. New York: Vintage Books. White AA, Rutledge P, Brown R. 2000. Report of subcommittee on health care. The Boule Journal (Sigma Pi Phi Fraternity), Vol. 64 (Fall, No. 5):45-46. White HA. 1970. The Freedmen’s Bureau in Louisiana. Baton Rouge: Louisiana State University Press. Williams DR. 1999. Race, socioeconomic status, and health: The added effects of racism and discrimination. Annals of the New York Academy of Sciences 896:173-188. Wing KR, Rose MG.1980. Health facilities and the enforcement of civil rights. 243-267. In: Roemer R, McKray G, eds. Legal Aspects of Health Policy: Issues and Trends. Westport, Connecticut: Greenwood Press. Wolff EN. 1995. Top Heavy: A Study of the Increasing Inequality of Wealth in America. New York: The Twentieth Century Fund Press. Woolhandler S, Himmelstein DU. 1992. The National Health Program Chartbook. Chartbook and Slideshow, 1992 Edition. Cambridge, Massachusetts: Center for National Health Program Studies. Woolhandler S, Himmelstein DU. 1998. For Our Patients, Not for Profits: A Call to Action. Chartbook and Slideshow, 1998 Edition. Cambridge, Massachusetts: Center for Na- tional Health Program Studies. Zenner W. 1996. Ethnicity. 393-395. In: Encyclopedia of Cultural Anthropology. New York: Henry Holt and Company. GLOSSARY ACCULTURATION The modification of the culture of a group or an individual, a process encompassing infancy onward, as a result of contact with a different culture. This cultural assimilation, which can take two
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522 UNEQUAL TREATMENT to three generations, moves toward the dominant Anglo-Protes- tant culture. AMERICAN INDIAN OR ALASKAN [sic] NATIVE * A person having origins in any of the original peoples of North America, and who maintains cultural identification through tribal affiliations or community recognition. ANGLO-PROTESTANT A more accurate term for those often referred to as White Anglo-Saxon Protestant Americans. ANGLO-SAXON a term that originally referred to Germanic tribes, the Angles and the Saxons, that came to the area now called England in the fifth and sixth centuries A.D.; it was later applied to the inhabitants of England and to those English who came to North America. ARCHAIC MEDICAL SYSTEM Though possessing religion and magic as distinct features, archaic medical systems were distinguished by empiri- cism, systemization, practical organization, recording its experi- ences and cases for future utilization, and incorporating some pub- lic health measures into its corpus of knowledge and practice. ASIAN OR PACIFIC ISLANDER A person having origins in any of the original peoples of the Far East, Southeast Asia, the Indian subcontinent, or the Pacific Islands. This area includes, for example, China, India, Japan, Korea, the Philippine Islands, and Samoa. ASSIMILATION An incoming group’s adoption of the cultural traits and iden- tity of the host group or integration into the primary networks and secondary organizations of the host group. 1. A preference or an inclination, especially one that inhibits im- BIAS partial judgement; 2. An unfair act or policy stemming from prejudice. BLACK A person having origins in any of the black racial groups of Africa. CLASS A social stratum whose members share certain economic, social, or cultural characteristics. CONSTRUCTIONIST Refers to the social formed dimensions of an inquiry. Such an inquiry includes elements such as the history, social di- mensions, and culture shaping a subject. CULTURE The accumulated store of shared values, ideas (attitudes, beliefs, values, and norms), understandings, symbols, material products, and practices of a group of people. Culture has both material and non-material aspects. DEMOGRAPHY The study of the characteristics of human populations, such as size, growth, density, distribution, and vital statistics. * This population is currently referred to as “Alaska Native.”
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523 RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE Actions carried out by members of dominant groups, or DISCRIMINATION their representatives, that have a differential and harmful impact on members of subordinate racial or ethnic groups. DOMINANT GROUP A racial or ethnic group with the greatest power and resources in a society (also called a majority group). ETHNIC AMERICAN Historically, groups that have been designated with a hyphenated name: “African Americans,” “Asian-Americans,” “Native-Americans,” “Hispanic-Americans.” The hyphenation im- plies that a second person would not recognize these individuals as Americans unless designated as such. ETHNIC GROUP A group socially distinguished or set apart, by others or by itself, primarily on the basis of cultural or national-origin charac- teristics. ETHNICITY Ethnicity is a concept referring to a shared culture and way of life, especially as reflected in language, folkways, religious and other institutional forms, material culture such as clothing and food, and cultural products such as music, literature, and art. The collection of people who share an ethnicity is often called an ethnic group. EUROPEAN AMERICAN Denotes individuals usually called “white” which need no designation (such as ethnic or hyphenated Americans) be- cause they are recognized and presumed to be Americans. HEALTH A state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity. [WHO definition] HEALTHCARE Those services provided to individuals or communities by agents of the health services or professions, for the purpose of pro- moting, maintaining, monitoring, or restoring health. Health care is broader than, and not limited to medical care, which implies therapeutic action by or under the supervision of a physician. HISPANIC A person of Mexican, Puerto Rican, Cuban, Central or South American or other Spanish culture or origin, regardless of race. IDENTIFICATIONAL ASSIMILATION A term involving giving up one’s ethnic identity for that of the dominant Anglo-Protestant culture, or an incoming group’s development of a sense of identity linked to that of a host group. IDEOLOGICAL RACISM An ideology that considers a group’s unchangeable physical characteristics to be linked in a direct, causal way to psy- chological or intellectual characteristics and that, on this basis, dis- tinguishes between superior and inferior racial groups. INSTITUTIONALIZED RACISM Differential access to the goods, services, and opportunities of society by race. Institutionalized racism is norma- tive, sometimes legalized, and often manifests as inherited disad- vantage. It is structural, having been codified in our institutions of
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524 UNEQUAL TREATMENT custom, practice, and law, so there need not be an identifiable per- petrator. It is often evident as inaction in the face of need. INTERNALIZED RACISM Acceptance by members of the stigmatized races of negative messages about their own abilities and intrinsic worth. It is characterized by their not believing in others who look like them, and not believing in themselves. It involves accepting limitations to one’s own full humanity, including one’s spectrum of dreams, one’s right to self-determination, and one’s range of allowable self- determination, and one’s range of allowable self-expression. It manifests as an embracing of “whiteness” (use of hair straighten- ers and bleaching creams, stratification by skin tone within com- munities of color, and “the white man’s ice is colder” syndrome); self devaluation (racial slurs as nicknames, rejection of ancestral culture, and fratricide); and resignation, helplessness, and hope- lessness (dropping out of school, failing to vote, and engaging in risky health practices). LIFE SCIENCES An inclusive term designating all branches of science (i.e., biology, medicine, anthropology, epidemiology, or sociology) that deal with living organisms and life processes. MAINSTREAM A term that is often used to describe the “general market,” usually refers to a broad population that is primarily White and middle class. MEDICINE The science and art dealing with the prevention, cure, or allevia- tion of disease...the Western Greek model sites of activity are: the bedside, library, hospital, community, and the laboratory. MINORITY A group that is singled out because of physical or cultural char- acteristics whose members become objects of discrimination; it typically has less power and resources than the dominant group (also called a subordinate group). MODEL MINORITY STEREOTYPE The non-Asian stereotype that views certain Asian American groups as uniquely exemplary in socioeconomic and moral characteristics compared to other people of color. PERSONALLY MEDIATED RACISM Prejudice and discrimination, where preju- dice means differential assumptions about abilities, motives, and intentions of others according to their race, and discrimination means differential actions toward others according to their race. PREJUDICE An antipathy, felt or expressed, based upon a faulty generaliza- tion and directed toward a group as a whole or toward individual members of a group. 1. As many physical anthropologists abandon racial taxonomies alto- RACE gether, race can be more objectively considered a sociocultural con- cept wherein groups of people sharing certain physical characteristics are treated differently based on stereotypical thinking, discriminatory
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525 RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE institutions and social structures, a shared worldview, and social myths; 2. A term developed in the 1700s by European analysts to refer to what is also called a racial group (see racial group). RACIAL GROUP A social group that persons inside or outside the group have decided is important to single out as inferior or superior, typically on the basis of real or alleged physical characteristics subjectively selected. REDUCTIONISM The belief, very prevalently used in science, that the whole of reality consists of a minimal number of entities or substances. The major methodological reductive triumph of recent years is the demonstration that the classical unit of heredity, the gene, is a mac- romolecule—deoxyribonucleic acid, or DNA. SCIENTIFIC RACISM The creation and employment of a body of legitimately scientific, or patently pseudoscientific, data as rationales for the preservation of poverty, inequality of opportunity for upward mobility, and related regressive social arrangement. Usually creat- ing a myth of two distinct races of mankind—one consisting of a small, healthy, wealthy, educable elite, while the second race is a far larger population of poor or nonwealthy, vulnerable, and alleg- edly uneducable by virtue of hereditarily inferior brains—scien- tific racism has often also instituutionalized and lent scientific re- spectability to racist dogma and practices that were all far, far older than science itself. SLAVE HEALTH DEFICIT The dramatic and deliterious Black/White differen- tials in health status and outcome presumed to be the consequence of slavery and subordinate racial status. SLAVE HEALTH SUBSYSTEM The inconstant, inferior, alternate health system made up of traditional healers, root doctors, granny midwives and nurses, overseers, and planters’ wives, sometimes backed up by formally trained physicians, provided African Americans during slavery. Some plantation infirmaries and hospitals and slave dis- pensaries and hospitals served as institutional sites. STEREOTYPE A rigid, oversimplified, often exaggerated belief or image that is applied to both an entire category of people of a racial or ethnic outgroup and to each individual within it, usually negative, that is false or that greatly distorts the real characteristics of the outgroup. SUBCULTURE A subculture pertains only to those standards that are operative when a person is acting in a particular social capacity or group. For example, occupations and ethnic groups develop their own subcul- tures—standards for what exists, what goals are to be valued, how one should behave—which are relevant when one is acting either on the job or as a member of the ethnic group but which are largely
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526 UNEQUAL TREATMENT irrelevant outside those contexts. The medical profession and health system are excellent examples of subcultures (see culture). SUBORDINATE GROUP A group that is singled out because of physical or cul- tural characteristics for differential and unequal treatment and whose members become objects of discrimination; it typically has less power and fewer resources than the dominant group. WHITE A person having origins in any of the original peoples of Europe, North Africa, or the Middle East. WORLDVIEW A culturally structured, systematic way of looking at, perceiv- ing, and interpreting various world realities. The Western racial worldview holds that racial groups are by nature unequal and can be ranked along a gradient of superiority—inferiority. GLOSSARY REFERENCES Bynum WF, Browne EJ, Porter R, eds. 1981. Dictionary of the History of Science. Princeton, New Jersey: Princeton University Press. Byrd WM, Clayton LA. 2000. An American Health Dilemma. Volume 1. A Medical History of African Americans and the Problem of Race: Beginnings to 1900. New York: Routledge. Byrd WM, Clayton LA. 2001. An American Health Dilemma. Vol. 2. Race, Medicine, and Health Care in the United States: 1900—2000. New York: Routledge. Chase A. 1980. The Legacy of Malthus: The Social Costs of the New Scientific Racism. New York: Alfred A. Knopf. Feagin JR, Feagin CB. 1999. Racial and Ethnic Relations. Sixth Edition. Upper Saddle River, New Jersey: Prentice Hall. Harwood A, ed. 1981. Ethnicity and Medical Care. Cambridge, Massachusetts: A Common- wealth Fund Book, Harvard University Press. Haynes MA, Smedley BD, eds. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, D.C.: National Academy Press. Johnson AG. The Blackwell Dictionary of Sociology: A User’s Guide to Sociological Language. Cam- bridge, Massachusetts: Basil Blackwell Inc., 1995. Jones CP. Levels of racism: A theoretic framework and a gardener’s tale. Am J Public Health 2000; 90:1212-1215. Last JM, ed. 1988. A Dictionary of Epidemiology. Second Edition. New York: Oxford Univer- sity Press, for the International Epidemiological Association. Randall VR. 1994. Does Clinton’s health care reform proposal ensure (e)qual(ity) of health care for ethnic Americans and the poor? Brooklyn Law Review (Spring, No. 1); 60:167- 237. Smedley A. 1999. Race in North America: Origin and Evolution of a Worldview. Second Edition. Boulder, Colorado: Westview Press. Soukhanov AH, ed. 1996. The American Heritage Dictionary of the English Language. Third Edition. Boston: Houghton Mifflin Company. U.S. Department of Health and Human Services. 1992. Cultural Competence for Evaluators: A Guide for Alcohol and Other Drug Abuse Prevention Practitioners Working With Ethnic/ Racial Communities. Rockville, Maryland: Office for Substance Abuse and Prevention, Alcohol, Drug Abuse, and Mental Health Administration, DHHS Publication No. (ADM)92-1884.
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527 RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE Van den Berghe PL. 1967. Race and Racism: A Comparative Perspective. New York: John Wiley and Sons, Inc. Webster’s Collegiate Dictionary, 5th Edition, s.v. “medicine.”