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Race and ethnicity as variables in medical research

Note: This report, written in response to  Resolution 505 (A-97), represents the medical/scientific literature and AMA policy on this subject as of June 1998.

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Despite the concern over racial and ethnic disparities in health care, there is little consensus among researchers on the extent of these disparities.  Lack of consensus is, in part, a product of the numerous problems associated with the conceptualization and measurement of race and ethnicity.1  In addition, there is debate on the extent or nature of the relationship between race, ethnicity, and disease.  A lack of clarity in the conceptualization of race and ethnicity can also affect clinical judgments or can obscure the true determinants of observed variation in disease, with potentially harmful social consequences.  This report will focus on the use of race and ethnicity as independent variables in studies of health in the United States in an effort to clarify some of these ambiguities.  This report will not address the presence or effects of racism in medical research, as those issues are sufficiently distinct and complex to merit separate study and discussion.

Defining race and ethnicity

Race:  Racial groups are generally defined in the physical and social sciences as any relatively large division of persons that can be distinguished from others on the basis of inherited physical characteristics. 2-3  Despite the obvious biological aspects of racial definition, there is growing recognition that racial classification schemes are variable and that race is more a social category than a biological one.4-9  Considerable evidence is given in support of this conclusion.  For example, institutional and sociocultural factors have been shown to be important in the development of most current racial taxonomies.10  In addition, racial classifications typically rely on phenotypic or physical traits (eg, skin color, hair, etc.) that are themselves socially defined.8   A reliance on physical traits is further compromised by migration and population admixture, which blur boundaries between races.1  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. Finally, discrepancies also exist between interviewer-observed and self-reported race.11-12  While Bureau of the Census evaluations have found self-report to provide more consistent racial definition, the operationalization of race remains problematic, as categories for race are generally not well defined or understood by the populations questioned.11, 13-15    

In contrast to the growing consensus that race is socially defined, biomedical sciences and public health continue to view race as accurately reflecting an underlying genetic homogeneity.6, 16-17  Medical dictionaries emphasize the primacy of biological distinctiveness (eg, blood type and gene frequencies) as the criteria for the classification of human populations.18-20  Despite this emphasis, however, it remains common practice within biomedical research to assign race based on socially defined phenotypic traits such as skin color and facial features.16,21  Furthermore, individuals are usually classified into the same socially defined taxonomies used in the social and physical sciences.6  This disparity between theory and practice in the biomedical use of race has generated numerous critiques within medicine and public health.4,17,22-24  Most note the numerous problems associated with socially defined racial taxonomies and conclude that, at present, race remains a social-biological construct with only limited scientific basis.  This view is supported by studies showing phenotypic characteristics to be only weakly associated with genotypic variation.25-28   It is estimated that only 7 percent to 10 percent percent of all possible human genetic variation occurs between the so-called major races (eg, Caucasoid, Negroid, and Mongoloid).9,28-29    Thus, there is considerably more genetic variation within races than between them, making it difficult to meaningfully classify humans into discrete biological categories with rigid boundaries.

The disparity between theory and practice in the assignment of race can have a number of implications for biomedical research.6,17  For example, the uncritical use of race in medicine effectively legitimizes an unscientific construct.  Once legitimized, assumptions about race are then free to influence diagnosis and treatment patterns, with potentially harmful consequences.17  Recent advances in molecular biology present opportunities to logically develop racial taxonomies and thus eliminate the disparity between theory and measurement.8,16,21  Theoretically, race as a scientific construct could be tested using genetic reference data or gene markers 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 racial identity by this means have been published.

Ethnicity:  Unlike race, ethnicity is universally recognized as being socially defined.  While groups can share a range of phenotypic characteristics due to their shared ancestry, typically ethnicity is used to highlight cultural and social rather than biological characteristics.8, 30-31  For example, in a recent study of contraceptive use in Kuwait the authors note considerable phenotypic similarities among the population under study, but make cultural distinctions based on whether people trace their roots to a native tribal system.32  Another study examining cancer rates in Bombay, India, distinguished groups based on religious affiliation.33 

Some authors contend that ethnicity is a useful independent variable for studying variation in health.23,34  They believed that a person’s ethnic identity may offer clinical clues that can assist in diagnosis.  These clues include geographic origin, migratory status, dietary preferences, cultural and environmental factors, and genetic history.17  Others, however, have questioned the use of ethnicity in medical science.30,35  Of particular concern is the exceedingly complex nature of ethnic definition.30,36-37  Measures of ethnicity may incorporate any number of combinations of social, geographic, religious, linguistic, dietary, and other variables used to identify individuals and populations.17, 38  The concept of ethnicity is neither fixed nor static.  Ethnicity is not only what people identify themselves to be, but is also a product of labeling by other groups in multicultural societies.  As such, ethnicity may change or evolve over time depending on the social, demographic, economic, and political forces in society.39-40  Finally, numerous methodological problems plague ethnic definition, including discrepancies between interviewer observed and self-reported ethnicity11,14,41-43 and variations in ethnic identification associated different questionnaire formats.44

The dynamic and imprecise nature of ethnic classification makes it dangerous to assume that health outcomes can be directly related to a patient’s membership in a particular ethnic group.  Ethnic cultural retention is also, in part, an individual process that incorporates an objective behavioral dimension.  Basically, this means that the stronger the ethnic identity, the more ethnic cultural values and behaviors are retained.45  This behavioral dimension has strong implications for studying ethnic variation in health behavior.  In particular, researchers must identify the values and norms regarding health behavior in the ethnic cultures under study.  For example, in traditional Chinese culture, mental illness of a family member is a disgrace to the whole family.  In an effort to save “face” such illness would likely be concealed within the family.46  Studies also have examined the effects of cultural attitudes and beliefs on the reported use and misuse of alcohol and other drugs.40,46-48

Interchangeable use of race and ethnicity:  Compounding the problems associated with defining either race or ethnicity is the fact that the two concepts are often used interchangeably.31  For example, Taber’s medical dictionary defines race as “a distinct ethnic group characterized by traits transmitted through the offspring [italics added].”49  Statistical Directive 15, the federal mandate published by the Office of Management and Budget (OMB) outlining uniform standards for racial and ethnic classification, also permits the combination of both race and ethnicity into a single classification system.  Blacks and whites are asked to identify themselves ethnically as either Hispanic or non-Hispanic.  The interchangeable use of race and ethnicity presents a serious barrier to the consistent definition of either concept in biomedical research.  All-encompassing labels such as “race/ethnic groups” only confuse matters because while they may overlap, “race” and “ethnicity” are conceptually and operationally distinct.1,30,34,50

Race and ethnicity as variables in medical research

In clinical research, differential morbidity and mortality rates are often correlated with race or ethnic heritage.  For example, researchers have found clear racial and ethnic disparities to exist in our nation with regard to access and utilization of health care.51-65  In addition, the prevalence of many diseases, injuries, and other public health problems has been disproportionately higher in some racial/ethnic minority populations.8,21  For instance, recent medical research has found racial disparities in the incidence of elevated systolic blood pressure and hypertension,8,66-68 cancer,8,69-70 diabetes,8, 68 nonfatal injury,71 and mortality.72-74  Recent research also has identified ethnic variations in mortality and morbidity of a number of diseases.8,75-77  Variations by both race and ethnicity also were found in the way respondents defined health behavior and physical activity in a series of questions used in the Centers for Disease Control and Prevention Behavioral Risk Factor Surveillance System (BRFSS).78

Problems associated with the definition and measurement of race and ethnicity call into question the validity and reliability of conclusions linking race, ethnicity and disease.1,8-9 

At issue is whether race and ethnicity are independent predictors of health or whether race and ethnicity only serve as proxies for unmeasured biological or socioeconomic factors.  Results are generally mixed.  Some researchers have continued to find strong associations between race, ethnicity, and health after adjusting for differences in socioeconomic status (SES). 67,73,79-80  Others, however, have found strong bivariate associations reduced to statistical insignificance when patients are matched on key demographic and socioeconomic variables.81-83  Even in cases where associations between race, ethnicity, and disease can be reasonably assumed, race and ethnicity are usually not evaluated as representing sources of systematic measurement error.  Thus it is not clear whether the variations in disease incidence or mortality rates are primarily the result of how race and ethnicity are defined or whether they represent true differences. How this dilemma is resolved has important implications for health policy and planning.

On the whole, the literature suggests that race and ethnicity have traditionally been used in medical literature as proxies for unmeasured social and socioeconomic variables.6,8,84   Included among these unmeasured variables are traditional measures of SES (eg, education) as well as more-difficult-to-measure factors such as the chronic stress associated with long-term discrimination.  The importance of SES variables, in particular, in explaining racial and ethnic differences in the rates of many diseases has been consistently demonstrated.  Studies in Alameda County, CA, have been particularly informative.  A study of the economically depressed areas of that county found health status to be more strongly associated with income than with race.85  In that same county, it was estimated that over one third of the total excess deaths among blacks could be attributed to “preventable deaths,” with SES-related inequalities a major factor.86

Solutions to the role of race and ethnicity in disease lie in multivariate analysis.1,5-6,8,87  As social constructs, race and ethnicity cannot be interpreted apart from the environmental context.  Geographic (latitude) variation, SES, dietary intake, cultural history, etc. are all risk factors commonly related to health as well as race and ethnicity.  When race and ethnicity continue to be related to the incidence of disease even after adjusting for common risk factors, it might be concluded that genetic predispositions to disease vary between racial or ethnic groups.  While this is clearly the case for certain diseases (eg, Tay Sachs disease in Ashkenazi Jews and sickle cell anemia in African Americans), assumptions about genetic predispositions to the chronic diseases related to aging have not been proven.4,24,84   In most cases, diseases originally assumed to be the product of genetic factors are actually found to be socially determined.4,7  Even in situations where a cause-effect relationship is demonstrated between biological variables and a disease state, it is difficult to attribute this relationship to race or ethnicity because of interracial or interethnic overlap with regard to biological variables.31,88

Should race and ethnicity be used as variables in medical research?

Clearly, the dynamic and imprecise nature of racial definition makes it an inexact variable in epidemiologic and biomedical research.  In fact, the many problems associated with the conceptualization, measurement, and utilization of race have led some health researchers to argue for discontinuing the use of race as a variable in medical research.89   While some researchers have suggested that the term ethnicity replace race in health research,17,23,50 it is clear that ethnicity is also dynamic, sharing many of the conceptual and methodological problems associated with the use of race as an independent variable in medical research. 

Although it may seem tempting to reject the use of either concept in biomedical research, a complete disregard of race and ethnicity would be unfortunate.   It is important to study racial and ethnic differences in health for several reasons:  (1) The increasing diversity of the US population underlies the increasing importance of racial and ethnic data for public health surveillance.44  As fundamental organizing principles in US society,84,90 race and ethnicity will reflect differences in SES as well as other environmental factors such as crowding, sanitation, and social stress.  Both SES and these environmental factors, in turn, have been clearly linked to health status.8,91-95    (2)  Race and ethnicity have historically reflected prejudice in American society.  Throughout our history, changes in the measurement of race or ethnicity have often reflected the emergence or redefinition of marginal populations.6  Marginal populations are less likely to be acculturated with mainstream society and are less likely to have access to health care.8  (3)  While the bulk of the evidence does suggest that race and ethnicity are proxies for unmeasured variables, there is still some evidence for independent effects of race and ethnicity on health.8,68  A number of researchers have found that African Americans have lower income returns from education compared to whites.7,96  It is likely that such differences will mediate the impact of SES on health by race, but empirical findings are insufficient, largely focusing on psychological and psychiatric outcomes.97-99

The last point is especially important.  The fact that effects for racial-ethnic variations in health persist in a number of studies after adjustments for SES suggests that race and ethnicity are more than SES.  The persistence of racial and ethnic variations in health may simply be due to the fact that the interrelationships between race-ethnicity and SES are too complex to unravel with traditional adjustments for current income and education.83   However, until more efficient means are suggested, researchers must conclude that race-ethnicity and SES are not equivalent. 

Implications

A number of responsibilities are inherent in the continued use of race and ethnicity as independent variables in medical research:

  • It needs to be clear that race and ethnicity are conceptually distinct. 
  • The complex and fluid nature of both concepts must be more widely appreciated. 
  • The limitations of all current methodologies for classifying racial and ethnic groups must be recognized and made explicit in designing and implementing research.  Limitations inherent in the racial and ethnic taxonomies employed must be clearly stated.  While self-report of race and/or ethnicity is generally preferred over researcher observation, it must be recognized that this method also has limitations, including inconsistent reporting and misreporting.18  Unless researchers are clear with regard to their methodological limitations, the nature of the questions asked and the interpretations of findings may obscure the true determinants of variations in disease. 
  • Investigators must recognize that racial and ethnic taxonomies are social constructs, the product of institutional as well as sociocultural influences.
  • Information on race or ethnicity should be collected in the context of other relevant variables.  In particular, SES and gender need to be considered at the same time to allow for analysis of the independent impact of race and ethnicity on health. 
  • The dynamic nature of race and ethnicity means that results of research may rapidly become out of date.  Medical researchers must be cautious when generalizing results across time, generations, or populations with different histories.
  • Because inaccurate methodology or interpretations can lead to inaccurate diagnosis, research on the relationships between race, ethnicity, and disease must be based on sound scientific theory.

Changing demographics in the United States and the dynamic nature of race and ethnicity has led the federal government to take steps to address the shortcomings associated with OMB Directive 15.  In October 1997 the OMB announced the adoption of new categories for racial and ethnic makeup (eg, black or African American, American Indian or Alaska Native) on federal forms.  In addition the government will now for the first time allow people to identify themselves with as many racial or ethnic categories as they believe apply. 

Conclusion

This review of the literature highlights the continued use of sociological definitions of race and ethnicity in medicine.  Furthermore, it demonstrates the need to be explicit in the conceptualization of both race and ethnicity in biomedical research.  Also important is the ability to simultaneously measure additional sociodemographic variables, such as gender and SES, to allow for a multivariate analysis capable of demonstrating possible independent effects of race and ethnicity on health.  Observations of variations in the prevalence of disease must be followed by a complete and detailed description of the relative importance of environmental, lifestyle, cultural, and genetic influences.  Only then can racial and ethnic influences on disease or disease susceptibility be identified.   

Recommendations

The following statements, recommended by the Council on Scientific Affairs, were adopted by the AMA House of Delegates as AMA policy at the 1998 AMA Annual Meeting:

  1. (a) Race and ethnicity are valuable research variables when used and interpreted appropriately;   b) That current definitions of race and ethnicity rarely reflect biological and genetic distinctiveness, but often reflect socioeconomic and cultural distinctiveness; c) That the military coding system for race and ethnicity more accurately reflects biologic and genetic distinctiveness than the current system used by the US Census Bureau.
  2. Physicians should recognize that race and ethnicity are conceptually distinct.
  3. The AMA supports research into the use of methodologies that allow for multiple racial and ethnic self-designations by research participants.
  4. The AMA encourages investigators to recognize the limitations of all current methods for classifying race and ethnic groups in all medical studies by stating explicitly how race and/or ethnic taxonomies were developed or selected.
  5. The AMA encourages appropriate organizations to apply the results from studies of race-ethnicity and health to the planning and evaluation of health services.
  6. The AMA will survey peer-reviewed medical journals to determine policies and practices for reporting racial and ethnic data.
  7. The AMA will continue to monitor developments in the field of racial and ethnic classification so that it can assist physicians in interpreting these findings and their implications for health care for patients.

Also see the AMA Health disparities Web site.

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Resolution 505 (A-97)

Resolution 505, introduced by the Colorado Delegation at the 1997 American Medical Association (AMA) Annual Meeting, asked: “That the AMA study the use of the term ‘race’ in medical context and provide a report of its findings.” The resolution was referred to the Board of Trustees, which referred it to the Council on Scientific Affairs.

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Report background [Editor's note:  This discussion reflects AMA policy as of June 1998.]

The AMA is committed to eliminating racial disparities and biases in health care.  The AMA believes that: “Disparities in medical care based on immutable characteristics such as race must be avoided” (Policy E-9.121,AMA Policy Database).  In addition, BOT Report 50 (I-95), “Racial and Ethnic Disparities in Health Care,” stated:

The task is before our AMA and every physician to help address the terrible problem of racial and ethnic disparities in health care...Short-term goals that already are beingaddressed include: sensitizing physicians and others to this problem; trying to determine the extent of the problem on a national and organizational basis; encouraging the establishment of monitoring mechanisms to identify and eliminate the problem to the extent possible; identifying successful model programs already in place to address the problem; and educating and motivating others to adopt appropriate models in their communities and practice settings. 

AMA policy strongly supports efforts to sensitize physicians and others to the problem of racial and ethnic disparities in health care.  Approaches include: (1) Improving access to health care to ensure that black Americans without adequate health care insurance are given the means to access necessary care; and (2) developing practice parameters that include criteria that would preclude or diminish racial disparities (Policy H-350.990).

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Last updated: Sep 21, 2007
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