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Classification of Data on Race and Ethnicity

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This report fulfills Recommendation 7 of Council on Scientific Affairs Report 11 (A-98), Race and Ethnicity as Variables in Medical Research.

Background

The occurrence of many diseases, injuries, and other public health problems is disproportionately higher among some racial and ethnic minorities in the United States.^1-2 For example, a report of the U.S. Department of Health and Human Services Secretary’s Task Force on Minority Health, using the concept of excess deaths (actual deaths for a minority group compared to the expected number of deaths if the mortality of that group were the same as the white population), identified 42% of deaths among blacks, 25% of deaths among American Indians, and 14% of deaths among the Spanish-surnamed population in Texas as excess deaths.³ Studies have also found racial and ethnic minorities to have higher rates of nonfatal injury,⁴ infant mortality,^5-7 and higher morbidity of a number of diseases, such as hypertension,^1,8-9 cardiovascular disease,^1,10-11 tuberculosis,¹² cancer,^1,13-15 diabetes,^16-18 and obstructive lung disease.¹⁹ Many of these differences remain even after controlling for other risk factors such as socioeconomic status, gender, or health-related behavior.^1,10,20-21

Racial and ethnic minorities in the United States also experience less intensive and lower quality health care.²² Compared to whites, blacks and other minorities are less likely to receive appropriate preventive health care or to complete advance directives,^23-26 are less likely to see specialists or receive newer technological procedures,^23,27 and are more likely to experience lower quality hospital care.²⁸ Racial and ethnic minorities also experience less intensive care, including fewer cardiovascular procedures,^29-33 peripheral vascular procedures,³⁴ cancer-related procedures,^35-36 and organ and tissue transplants.^26,37 In addition, less aggressive treatment has been reported for prenatal care³⁸and a number of diseases, including cancer,^39-40 human immunodeficiency virus infection,^41-42 depression,⁴³ and end-stage renal disease.⁴⁴ Finally, a person’s race or ethnicity is also associated with his or her experience of potentially avoidable procedures, such as amputations or, in cases where do-not-resuscitate orders exist, intubations.^22,25-26

Because of these differences, the collection of data on race and ethnicity has become an important element of patient care as well as public health surveillance efforts designed to monitor differences in health status and access to care. These efforts then directly inform public health policies designed to eliminate racial and ethnic disparities in health and health care. Data are now collected on the maternal health, natality, morbidity, mortality, health behaviors and attitudes, health services utilization, access to health care, and costs associated with care. To be useful, however, many analyses require combinations of data from different sources. For example, research on racial and ethnic variations in infant mortality usually involves vital statistics data on live births as well as data from fetal death records. Therefore, it is essential that race and ethnicity be compatibly defined and measured across datasets. This is not often the case, however,^45-46 and despite the importance of race and ethnicity, health researchers routinely use these data in an uncritical manner, with little attention given to the underlying problems of measurement.^46-49 There remains a need to identify a credible classification system for data on race and ethnicity; one in which the categories and group designations are consistently defined and ascertained to allow for standardized use across different datasets.

Methods

A review of the literature for the years 1980 to 2000 was conducted as part of a broad strategy to investigate the use and interpretation of race and ethnicity in medicine. Journal articles were identified through systematic searches of the MEDLINE database. Other sources included the Illinois Bibliographic Information Services, an online collection of databases that includes PsychINFO and the Social Sciences Index. English-language articles were selected based on their ability to provide information on (1) the definition of race and ethnicity; (2) the classification or measurement of race and ethnicity; and (3) the use and interpretation of race and ethnicity as variables in medical research. Further relevant articles and books were selected from the reference listings of the primary journal articles.

Defining Race and Ethnicity

This report defines race as any relatively large division of persons that can be distinguished on the basis of inherited physical characteristics. Despite the obvious biological aspects of this definition, racial classifications typically rely on phenotypic or physical traits (e.g., skin color, hair, etc.) that are themselves socially defined and often compromised by migration and population admixture that blur the boundaries between races.^1,50 A classic example involves children born to racially mixed marriages and the problems inherent in their being assigned a racial designation on the basis of skin color or some other physical attribute. Ethnicity, on the other hand, is defined as divisions of persons based on national origin or distinctive cultural characteristics.^1,51 While often used interchangeably, or discussed together, race and ethnicity are recognized as being conceptually distinct.^50-51 This recognition is supported by American Medical Association (AMA) policy on the use of race and ethnicity as variables in medical research (H-460.924, Race and Ethnicity as Variables in Medical Research, AMA Policy Database).

There is a tendency within medicine to assume that race and ethnicity reflect an underlying genetic homogeneity (e.g., racial differences are genetically determined).⁴⁹ This tendency persists despite a growing recognition of race and ethnicity as social rather than biological constructs.^1,47,51-52 Evidence suggests that the phenotypic characteristics often used to define or assign a person’s race are only weakly associated with genotypic variation.^53-54 It is estimated that only 7% to 10% of all possible human genetic variation occurs between the so-called major races (e.g., Caucasoid, Negroid, and Mongoloid), indicating that there is considerably more genetic variation within races than between them.^53-55 Ethnicity, on the other hand, is more universally recognized as being socially defined, incorporating any number of combinations of social, geographic, religious, linguistic, dietary, and other variables used to identify individuals and populations. For example, a study examining rates of cancer in Bombay, India, distinguished groups based on religious affiliation.⁵⁶ Another study of contraceptive use in Kuwait made cultural distinctions based on attachments to a native tribal system.⁵⁷ Additional evidence for the social construction of race and ethnicity lies in the fact that neither race nor ethnicity are fixed or static; they change or evolve depending on changes in the social, demographic, economic, and political forces evident in society.⁵⁸

Classifying Race and Ethnicity

Recognizing race and ethnicity as being socially defined presents a number of challenges to public health surveillance and medicine.^58-59 To be useful to public health or medicine, race and ethnic designations must be consistent. They must also be reliable (e.g., whether data differ by measure or method of collection), valid (e.g., categories used provide a substantial explanation for the observed condition), exclusive and exhaustive (e.g., whether they include all members of the population and include each member in only one category), and meaningful to respondents.⁴⁶ However, because of the general lack of scientific consensus on race and ethnicity, as well as the dynamic nature of racial or ethnic definition, current classification systems have failed to meet these requirements, casting doubt on the utility of racial and ethnic analyses.^58,60-61 Debates have focused on whether or not current classification systems reinforce existing stereotypes, reproduce inequalities, and obscure true causal relationships.^60-61 Critiques have also stressed the need to explore the complex relationships between race, ethnicity, and socioeconomic status to understand the association of either race or ethnicity with adverse health outcomes.

The Revised Office of Management and Budget Directive 15

Despite these problems, current designations of race and ethnicity continue to play important roles in understanding health and determining access to health care.⁵⁹ One of the most influential classification systems emerged out of the Office of Management and Budget (OMB) Statistical Policy Directive No. 15 (issued in 1977 and revised in 1997). The revised directive designates five "racial" groups – white, black or African American, Asian, Native Hawaiian or Other Pacific Islander, and American Indian or Alaska Native – and one "ethnic" category, Hispanic or Latino.⁶² The revised guidelines also permit multiple racial identification in an attempt to capture the growing the diversity of the U.S. population (e.g., children of mixed race). Despite these changes, the revised OMB Directive 15 guidelines have been subject to much of the same criticisms leveled at other classification systems for race and ethnicity.^46,63 However, the OMB has stated explicitly from the onset that its standards were not based on anthropological or scientific principles. Despite this lack of science, the system has had far reaching effects on public health and medical research through its impact on the collection, tabulation and reporting of vital events, such as births, deaths, and fetal deaths, and census data.

Despite permitting multiracial designations, there remains a perception within health and health services research that the OMB guidelines fail to address the growing diversity of the U.S. population. For example, the "American Indian or Alaska Native" category specified by the OMB must encompass more than 500 federally recognized American Indian tribes and entities.⁴⁸ Similarly, the "Asian" and "Native Hawaiian or Other Pacific Islander" categories lump together persons from 28 Asian countries and more than 25 Pacific Island cultures respectively.⁶⁴ What most fail to realize, however, is that the OMB provides guidelines on a set of minimum categories for the collection of data on race and ethnicity. They can be expanded upon to meet the needs of research, so long as the expanded categories can be back- or reverse-coded into the base categories specified by the OMB directive. Thus, the potential coverage and specificity of this system is much greater than generally perceived.

The Centers for Disease Control and Prevention and the Agency for Toxic Substances and Disease Registry (CDC/ATSDR) Health Information and Surveillance Systems Board have developed guidelines for the implementation of an expanded classification system of race and ethnicity.⁶⁵ The Common Data Elements system creates a number of hierarchical levels out of the original OMB categories. For example, the OMB racial category of "American Indian or Alaska Native" is initially split into "American Indian" and "Alaska Native." Individual tribes and entities are then specified in greater detail for each of these categories in the third and fourth levels, resulting in a total of 839 unique identifiers (567 for American Indian and 272 for Alaska Native). Similarly, the OMB ethnic category of "Hispanic or Latino" is initially broken down into 8 identifiers (Spaniard, Mexican, Puerto Rican, Cuban, etc.). From these new categories an additional 33 subcategories are identified, resulting in a total of 41 unique identifiers for ethnicity. Because identifiers are hierarchical, researchers can use the Common Data Elements system to classify race and/or ethnicity to increasing levels of specificity. The CDC/ATSDR implementation guide for this system also provides instruction on reverse-coding to the original OMB categories and can be found at http://www.cdc.gov/od/hissb/docs.htm.

Another major advantage of the classification system outlined by OMB Directive 15 is its widespread use by state and federal agencies monitoring health status and health care in the United States. Most state health departments currently use the OMB guidelines in their surveillance of vital events and notifiable diseases. Federal agencies using the OMB guidelines for the collection of data on race and ethnicity include the CDC, the National Center for Health Statistics, the National Cancer Institute, the Indian Health Service, Immigration and Naturalization Services, the Health Care Financing Administration, and the Bureau of the Census. Data from these agencies are frequently used in health and health services research as either numerators for health indicators or population-based denominators.

Conclusion

Theoretically, genetic reference data or gene markers could be used to calculate the probability of an individual falling into one or more genetically defined population subgroups. To date, however, no reports of attempts to assign or classify race by these means have been published. Thus researchers are forced to acknowledge the social characteristics of racial and ethnic identification and to rely on classification systems that lack scientific consensus in attempts to understand the causal pathways that explain why race and ethnicity are often markers for adverse health risks and outcomes.^48,50-52,58 Acknowledging these limitations, a 1993 Workshop on the Use of Race and Ethnicity in Public Health Surveillance sponsored by the CDC and the ATSDR recommended that data on race and ethnicity should be collected only when useful for public health purposes; that data on racial and ethnic differences should be analyzed in relation to potential confounding variables such as socioeconomic status; and that the justification and methods for measurement of race and ethnicity be clearly defined and explicitly stated.⁵⁸

American Medical Association Policy

The AMA has limited policy related to the issues raised in this report: H-460.924, Race and Ethnicity as Variables in Medical Research, and H-350.983, Federal Guidelines for Standardization of Race/Ethnicity Codings (AMA Policy Database). The former recognizes race and ethnicity as being conceptually distinct and encourages researchers to recognize the limitations of all current methods to classify race and ethnicity by stating explicitly how race and/or ethnic taxonomies were developed or selected. The latter policy recommending the use of the Department of Defense (DOD) coding for the classification of data on race and ethnicity is made problematic by the fact that the DOD has begun replacing its system with one compatible with the revised OMB criteria.

RECOMMENDATIONS

The following statement, recommended by the Council on Scientific Affairs, was adopted by the AMA House of Delegates as AMA policy at the December 2000 AMA Interim Meeting:

AMA Policy H-350.983 is amended to read:

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