Mapping "Race": Critical Approaches to Health Disparities Research

Mapping Race

Critical Issues in Health and Medicine

Edited by Rima D. Apple, University of Wisconsin–Madison, and Janet Golden, Rutgers University, Camden

Growing criticism of the U.S. health care system is coming from consumers, politicians, the media, activists, and healthcare professionals. Critical Issues in Health and Medicine is a collection of books that explores these contemporary dilemmas from a variety of perspectives, among them political, legal, historical, sociological, and comparative, and with attention to crucial dimensions such as race, gender, ethnicity, sexuality, and culture.

For a list of titles in the series, see the last page of the book.

Mapping Race

Critical Approaches to Health Disparities Research

Edited by

Laura E. Gómez and Nancy López

Rutgers University Press

New Brunswick, New Jersey, and London

Library of Congress Cataloging-in-Publication Data

Mapping race : critical approaches to health disparities research / edited by Laura E. Gómez and Nancy López.

p. ; cm. — (Critical issues in health and medicine)

Includes bibliographical references and index.

ISBN 978–0–8135–6137–0 (hardcover : alk. paper) — ISBN 978–0–8135–6136–3 (pbk. : alk. paper) — ISBN 978–0–8135–6138–7 (e-book)

I. Gómez, Laura E., 1964– II. López, Nancy, 1969– III. Series: Critical issues in health and medicine. [DNLM: 1. Continental Population Groups—United States. 2. Health Status Disparities—United States. 3. Health Services Accessibility—United States. WA 300 AA1]

362.1'0973—dc232012042036

A British Cataloging-in-Publication record for this book is available from the British Library.

This collection copyright © 2013 by Rutgers, The State University

Individual chapters copyright © 2013 in the names of their authors

All rights reserved

No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, or by any information storage and retrieval system, without written permission from the publisher. Please contact Rutgers University Press, 106 Somerset Street, New Brunswick, NJ 08901. The only exception to this prohibition is fair use as defined by U.S. copyright law.

Visit our website: http://rutgerspress.rutgers.edu

Manufactured in the United States of America

Contents

Figures and Tables

Foreword

Preface

Chapter 1. Introduction: Taking the Social Construction of Race Seriously in Health Disparities Research

Part I. Charting the Problem

Chapter 2. The Politics of Framing Health Disparities: Markets and Justice

Chapter 3. Looking at the World through Race-Colored Glasses: The Fallacy of Ascertainment Bias in Biomedical Research and Practice

Chapter 4. Ethical Dilemmas in Statistical Practice: The Problem of Race in Biomedicine

Chapter 5. A Holistic Alternative to Current Survey Research Approaches to Race

Part II. Navigating Diverse Empirical Settings

Chapter 6. Organizational Practice and Social Constraints: Problems of Racial Identity Data Collection in Cancer Care and Research

Chapter 7. Lessons from Political Science: Health Status and Improving How We Study Race

Chapter 8. Advancing Asian American Mental Health Research by Enhancing Racial Identity Measures

Part III. Surveying Solutions

Chapter 9. Representing the Multidimensionality of Race in Survey Research: Representing the Multidimensionality of Race in Survey Research

Chapter 10. How Racial-Group Comparisons Create Misinformation in Depression Research: Using Racial Identity Theory to Conceptualize Health Disparities

Chapter 11. Jedi Public Health: Leveraging Contingencies of Social Identity to Grasp and Eliminate Racial Health Inequality

Chapter 12. Contextualizing Lived Race-Gender and the Racialized-Gendered Social Determinants of Health

Notes on Contributors

Figures and Tables

Figures

3.1 Age-Specific Mortality, Selected Years (1963–2004), Black/White Americans

4.1 Mary Gets a Score of 100 on a Verbal Ability Test

6.1 Conceptual Schematic of Identity Data Collection in a Cancer Service Line

12.1 Multidimensional Race Data at the Individual, Micro-level

12.2 Multidimensional Ethnicity as Distinct from Race

12.3 Racialized and Gendered Social Determinants of Health: Multilevel Race Data at the Micro-, Meso-, and Macro-levels

Tables

3.1 Life of Homo sapiens Condensed into a Calendar Year

5.1 Heuristic Chart of Holistic Race Measures

6.1 Initial Draft Policy Categories

7.1 Determinants of Health Status among Full/Latino Sample (Ordered Logistic Regression)

8.1 PRIAS-15 and PRIAS-12 Items Derived from Confirmatory Factor Analysis on the Original PRIAS

8.2 Multiple Regression Using the PRIAS, PRIAS-15, and PRIAS-12 Measures as Predictors and Psychological Well-Being as the Outcome

10.1 Some Examples of Risk Factors Used as Proxies for Race in Depression Research

10.2 Racial Identity Schemas for People of Color and White People

Foreword

In 2008, the National Institutes of Health hosted over five thousand scholars at its first Science of Eliminating Health Disparities Summit. The subsequent annual summits were designed to encourage integration of science, practice, and policy to build a healthier society. As the opening plenary keynote speaker for the first one, I was asked to address Health Disparities and the Intersection of Science and Policy. I deliberately anchored my talk in an explanation of health disparities as a reflection of social stratification and inequitable resource allocations along racial and ethnic lines. But what do we mean by racial and ethnic lines?

The scholars in this volume challenge us to be more precise about how we define and operationalize this type of stratification. Why? Because individuals are born into our society that neither treats people nor distributes opportunity equally. We observe discrimination, poverty, and other forms of oppression play out at the community level affecting overall community environment and opportunities. Especially in resource-poor communities, the stresses of daily life bear down on the minds and bodies of residents, inviting illness through environmental exposures and other types of stress that are expressed biologically in what we recognize as disease.

While Congress has required documenting these racial and ethnic disparities annually by the Agency for Health Research and Quality, it has done little to remedy the situation. Over the last few years, private philanthropies, such as the Robert Wood Johnson Foundation and the California Endowment, have recognized the need to prevent disparities by addressing the inequities in our society as well as addressing health care disparities—creating a more just society and thus a more healthy nation.

Interdisciplinary research plays an increasingly important role in addressing highly complex social issues such as health disparities. It allows scholars to reach beyond the boundaries of their own disciplines and to adapt or develop new methods of analysis. Institutional policies that support integrating the social and biological sciences could represent the twenty-first-century breakthrough similar to what we experienced in the twentieth century when biological and chemical scientists developed the fields of biochemistry, molecular biology, and molecular genetics that led to the sequencing of the human genome. Supporting interdisciplinary health and social science investigations and the development of transdisciplinary fields requires our nation’s funding institutions and universities to be more flexible and open to new ways of seeing things. The Institute for the Study of Race and Social Justice within the RWJF Center for Health Policy at the University of New Mexico is one example of such efforts.

Sequencing the human genome provided definitive proof that there is no genetic or biological evidence for the concept of race. Yet in our society we often rely on assumptions about race that erroneously assume that it is interchangeable with genes to explain the world and our understanding of it. Scientists are not immune from using the myth of race as biology in dangerous ways. When I arrived in New Mexico in 2008, I had the opportunity to participate in the annual Cancer Center retreat. Researchers shared the marvelous molecular discoveries brought about by genomic research advances, which offer prospects for innovations in treatment for a wide variety of cancers; however, I was taken aback when colleagues resorted to explaining statistical propensities for groups of people in New Mexico using wildly inaccurate racial stereotypes. These genetic reductionist interpretations of health disparities denied American Indian spiritual beliefs, challenged the history of Hispanic settlement in the region, and posed findings in ways that could be misinterpreted in policy implementation.

Despite all the problems inherent in the erroneous assumptions associated with the concept of race, it is imperative that we continue to collect data that captures the lived experiences and practices that contribute to the racialized inequality that is reproduced at all levels of society. While some may argue for a color-blind society and an end to the collection of race or ethnic data, this book deliberately understands race as a social construction that can be mapped vis-à-vis legal efforts to eliminate racism in all its forms—individual, institutional, and systemic. For example, in the areas of banking and housing we have largely eliminated public policies restricting groups of people from living in certain areas; however, informal practices in the mortgage and real estate industries continue to produce de facto segregation.

Over the last several decades, we have negligently accepted racial categories in our work without the typical scrutiny we use to define variables for our analyses. Instead of interrogating and capturing the social construction of race in our research, we have at times blindly treated race as if it were a static characteristic that allows for the comparison of the health of different groups in our society. Or we have misused race as a proxy for many unmeasured factors in our studies, for example, class or culture, thereby masking what may be amenable to clinical intervention or social policy intervention.

It is important that a paradigm shift take place in health disparities research, and Mapping Race helps catalyze it. Researchers should depart from the premise that racial and ethnic identities are fluid in both governmental and social settings. In order to combat discrimination, in 1976 Congress created the term Hispanic to group together a population that differs enormously by history, nationality, social class, legal status, and generation in the United States; it has little or no meaning outside of the U.S. political context. As scholars, scientists, and policy makers, we must challenge ourselves to be more precise with our categories of analysis and interpretation. The subjective meaning of such labels and whether they are situationally asserted are open empirical questions that need to be investigated.

R. Burciaga Valdez

July 2012

Preface

The story of how this book came to exist is somewhat unusual, and thus we include it here as a way of charting the intellectual genesis of Mapping Race. We intentionally invoke the word mapping in the book’s title as a metaphor to capture the complexity of race and to emphasize the need for researchers to grapple with that complexity. In early 2010, we received funding from National Institutes of Health (NIH) National Center on Minority Health and Health Disparities (NCMHHD) to hold a workshop called Mapping ‘Race’ and Inequality: Best Practices for Theorizing and Operationalizing ‘Race’ in Health Policy Research.¹ Under the auspices of the Institute for the Study of Race and Social Justice at the University of New Mexico, which we co-founded in 2009 and then co-directed (2009–2011), and which López now directs, we convened a group of nineteen scholars for a meeting in Albuquerque held April 29–30, 2011.

The participants in that intensive dialogue included scholars from the health, social, and biological sciences. They were an almost even mix of scholars whose primary methodological orientation was quantitative analysis versus those who used mixed methods or purely qualitative methods. Beyond those parameters, we self-consciously sought to include scholars who represented diverse race, gender, and ethnic backgrounds, as well as scholars at varied career stages. It is from that initial group of nineteen scholars that the contributors to Mapping Race emerged.²

Mapping Race has benefitted from the collective excitement and synergy we experienced leading up to the workshop, during our two-day meeting, and in our subsequent conversations. One of the striking things was the degree to which scholars from different disciplines and different methodological traditions were vexed about the same phenomenon: the frequent refusal by scholars doing research on race-based disparities to explicitly conceptualize (much less define) race and the accompanying problem of how to most effectively operationalize socially constructed race. We were stunned by the similar stories told by participating scholars in the biological sciences (including biology and genetics), the medical sciences (including epidemiology, medicine, and public health), and the social sciences (including anthropology, political science, psychology, and sociology) about how existing research in their fields typically engages race in superficial ways that largely ignores theoretical insights relating to conceptualizing race as socially constructed and, therefore, as historically contingent, dynamic, and multifaceted.

And yet, while we agreed on the problem, it was not obvious what the solutions were. Over the course of many conversations, disagreements, and even heated intellectual exchanges, we pushed each other to identify potential solutions and to speak across the traditional boundaries that separated us, such as method, discipline and scientific domain. Mapping Race embodies our progress and signals our desire to take this important conversation to a broader audience. We hope that it encompasses the voices of the original workshop participants and the exciting synergy of that collective conversation, as well as the contributions of the authors whose work has evolved into these chapters.

We are grateful to many people for helping us realize this publication. We are deeply indebted to the faculty, fellows, administrators, and staff at the Robert Wood Johnson Foundation (RWJF) Center for Health Policy at UNM. At the Center, we found a generous intellectual community that welcomed us as relative outsiders to health research when we began this journey and that encouraged our efforts to cross disciplinary, science, and methodological boundaries. We are especially grateful to Executive Director Robert Valdez for seeing early promise in our ideas and for supporting us at each step of the way, including in our working group and speakers’ series and symposium on topics related to this research.³ Many Center staffpersons played a role in helping us at various stages, and we are especially grateful to Lia Abeita-Sanchez, Lila Chavez, Sheri Lessanese, Thu Luu, Anita Parmar, Gina Sandoval, Vanessa Tafoya, Maria Vahtel, and Denise Wallen. Antoinette Maestas was especially helpful, working closely with us at several different stages. We thank Cirila Estela Vasquez Guzman, an RWJF Center for Health Policy doctoral fellow in sociology and our research assistant at the Institute (2010–2012), for her assistance on multiple facets of this project. Estela and three other RWJF doctoral fellows contributed immensely as observers at the NIH workshop: Sonia Bettez (sociology), Yahaira Pena-Esparza (psychology), and Vickie Ybarra (political science).

We would also like to thank chairs and staff at the School of Law and in the Department of Sociology at the University of New Mexico for their assistance at various stages of this project, including Beverly Burris, Dorothy Esquivel, David Fricke, Margaret Harrington, Cyndi Johnson, Dona Lewis, Melissa Lobato, and Richard Santos. We thank our deans at UNM and University of California, Los Angeles (UCLA) for supporting our research, including Brenda Claiborne, Rachel Moran, Mark Peceny, and Kevin Washburn. For research assistance during various stages of this project, we thank librarians and student assistants at the UNM School of Law and the UCLA School of Law. For help getting this manuscript to the final stages of production, we thank Tal Grietzer and especially Rusty Klibaner at the UCLA School of Law.

It has been a pleasure to work with the editors and staff at Rutgers University Press, and we thank acquisitions editor Peter Mickulas, David Takeuchi and other reviewers of our manuscript, and the entire staffs in the production and marketing departments. We are honored that Mapping Race is included in the Rutgers University Press series Critical Issues in Health and Medicine, edited by Rima D. Apple and Janet Golden.

Last, but certainly not least, we thank our families for their love and patience (and for putting up with too many early mornings, late nights, and weekends when they expected us to be free): Alejandro Gómez, Antonio Gómez, Eloyda Gómez, Luna Romero, Sierra Romero, Emma Romero and Augustine Romero.

Laura Gómez and Nancy López

July 2012

Notes

1. Funding for the workshop (April 29–30, 2011) that made this book possible (in part) was by 1R13MD006054–01 from the National Center on Minority Health and Health Disparities (NCMHD), the Agency for Healthcare Research and Quality (AHRQ), and the Eunice Kennedy Schriver National Institute of Child Health and Human Development (NICHD). The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention by trade names, commercial practices, or organizations imply endorsement by the U.S. government.

2. The participating scholars and their institutional affiliations were the following: John Garcia, University of Michigan; Arline Geronimus, University of Michigan; Laura Gómez, (then) University of New Mexico; Joseph Gone, University of Michigan; Joseph Graves Jr., North Carolina A&T State University and University of North Carolina, Greensboro; Clarence Gravlee, University of Florida; Janet Helms, Boston College; Kimberly Huyser, University of New Mexico; Derek Iwamoto, University of Maryland; Camara Jones, Centers for Disease Control; Jonathan Kahn, Hamline University School of Law; Jay Kaufman, McGill University; Sandra Lee, Stanford University; Simon J. Craddock Lee, University of Texas Southwestern Medical Center; Nancy López, University of New Mexico; Michael Montoya, University of California, Irvine; Maribel Rodriguez-Torres, Fundación de Investigación and Universidad de Ponce; Gabriel Sanchez, University of New Mexico; Aliya Saperstein, (then) University of Oregon.

3. For more information, see Trans-disciplinary Guidelines for Researching Race, Institute for the Study of Race and Social Justice, RWJF Center for Health Policy, University of New Mexico, http://healthpolicy.unm.edu/about/initiatives/isrsj, last accessed July 25, 2012.

Chapter 1

Introduction

Taking the Social Construction of Race Seriously in Health Disparities Research

Laura E. Gómez

Typing the word disparities into the search engine of the American Diabetes Association web site generates nearly 1,700 hits that relate to racial and/or ethnic gaps in diabetes rates and care (http://www.diabetes.org, accessed July 5, 2012). Similarly, an agency of the U.S. Health and Human Services Department proclaims that the risk of diabetes is much greater for minority populations than the white population (Diabetes Disparities among Racial and Ethnic Minorities Fact Sheet 2012). These warnings reflect multiple biomedical studies that have identified differential rates of diabetes among Whites (6.2 percent), American Indians (9 percent), Mexican Americans (10.6 percent), and African Americans (10.8 percent; Mokdad et al. 2000), as well as those that have reported that some non-White groups have diabetes-related complications at rates as much as 50 percent higher than Whites (Carter et al. 1996). The temptation is to attribute such disparities to genetic differences because people often assume that racial groups correspond to biological differences. Moreover, in a capitalist society in which much medical research is driven by pharmaceutical companies’ pursuit of individualized solutions to health problems (see Kahn, this volume), we often look for a genetic basis for health outcomes.

Yet much data suggests that the notion of biological race is a poor proxy for other social dynamics. For example, epidemiologist Thomas LaVeist and colleagues have challenged the conventional wisdom that differential rates of diabetes reflect essential, biological differences (2009). They studied diabetes in a racially mixed Baltimore neighborhood that included large numbers of both African American and White residents who were of the same socioeconomic class and who had comparable access to healthcare. In contrast to the government studies previously referenced, they found that African Americans and Whites in this neighborhood had quite similar rates of diabetes (LaVeist et al. 2009). I don’t mean to suggest that genetics play no role in race differences in health, LaVeist said, explaining the study’s conclusions, but before we can conclude that health disparities are mainly a matter of genetics we need to first identify a gene, polymorphism or gene mutation that exists in one race group and not others. And when that gene is found we need to then demonstrate that that gene is also associated with diabetes. On the other hand, there is [already] overwhelming evidence that behavior, medical care and the environment are huge drivers of race differences in health (Racial Disparities . . . 2009). In other words, looking for race-based health disparities may at best jump-start a productive scientific inquiry when it leads researchers, policy makers, and health care providers to ask further questions about why race seems to be important in the context of a specific disease or health problem. But, at its worst, looking for race-based health disparities blinds us to seeing the full range of possible causes of health inequalities.

The broader point that we collectively make in this book goes a step further: we must be skeptical of claims about race-based health disparities precisely because race is the product of historically rooted ideas and political contestation (Gómez 2012). Anthropologist Michael Montoya puts it this way: the ascertainment of ethnicity or race is a profoundly social enterprise anchored in contemporary history, and racial categories, both historically and today, correspond best to the imaginations of the scientists and not the presumably defining and stable features being measured (Montoya 2007). Using the example of diabetes in his book Making the Mexican Diabetic, Montoya explores how the process of racializing diabetes—that is, the process of scientists and health professionals learning to take for granted that diabetes has a distinct impact and perhaps even etiology in people of different races—has occurred in laboratories, in government funding circles, in peer-reviewed scientific publications, and in the practice of medicine (2011). What explains biomedical researchers’ categorization of humans into groups, and then the linkage of those groups to specific health problems such as diabetes, is the social process of making race—of constituting race as socially, politically, and scientifically important. Thus, our research agenda must include actively studying this racialization process; says Montoya: when we carefully examine the selection of a group to study, the labeling of that group, the representation of that group in scientific papers, we see a science of population labeling based squarely on sociocultural factors particular to each group, each region, and each historical period (Montoya 2007).

As the diabetes example shows, there is a thriving literature documenting what appear to be enduring race-based health disparities in the United States. In their comprehensive review of the literature on health disparities, sociologist David Williams and his colleagues confirm that the long-standing gap between health outcomes among Whites and other racial groups has persisted into the twenty-first century (2010). In particular, a wide variety of data sources show a continuing gulf between Whites and Blacks; for example, as a general measure of health, consider life expectancy. Whites’ life expectancy is 78.3 years, compared to 73.1 years for Blacks, so that it would take another quarter-century to close the current White/Black life expectancy gap (Williams et al. 2010, 70). Similarly, the data show widening contemporary disparities between Native Americans and Whites (Williams et al. 2010, 74). Although, for a variety of reasons, the data is more limited than for African Americans and Native Americans, other data show that Latinos and Asian Americans have inferior health outcomes relative to Whites in many categories (Williams et al. 2010, 71).¹

To a large extent, the current boom in the study of race-based health disparities is the result of the process of institutionalizing, at the federal level, research and data collection along gender and racial lines. Since 1990, Congress has mandated a number of policy changes that have impacted how biomedical researchers and social scientists study health disparities (C. Lee 2009). For example, in 1990 the National Institutes of Health (NIH) created the Office of Research on Minority Health (C. Lee 2009, 1185).² In 1993, when Congress funded the NIH, it directed the agency to require all grant awardees to include women of all races and minority men in clinical research (C. Lee 2009, 1185). During the same era, the federal government also created specialized departments to explore racial disparities within the Department of Health and Human Services and the Centers for Disease Control (Abu El-Haj 2007, 292–93). Sociologist Stephen Epstein (2007) has documented the fascinating political context and institutional dynamics that produced these changes, but no one doubts that these norms have become entrenched in today’s biomedical research establishment.

If the federal government mandates various types of data collection to document such gaps and that data show racial gaps in health outcomes, what is wrong with health disparities research on race? Nothing, so long as that research is scientifically rigorous and accurate. The purpose of Mapping Race is to improve how health disparities research is conducted by challenging some central premises. The book’s core argument is that biomedical researchers and social scientists have not sufficiently grappled with how the conceptualization of race as socially constructed implicates how we operationalize and analyze race in health disparities research. Although they represent a variety of disciplines across the branches of the medical, biological, and social sciences and take varied methodological approaches, the authors in this book agree that serious negative consequences will result if researchers continue to follow the current course. Significantly, it is not our claim that research on race or race-based health disparities is illegitimate or inappropriate. We align ourselves with those scholars who have called for more and better research on race and racism (American Sociological Association 2003), rather than with those who have argued that the race is too complicated and fraught to be effectively studied scientifically (American Anthropological Association 1998).

Thinking Critically about Racial Disparities

In order to make the point that researchers must chart a different course, let us start with an example that seems to be a classic case of a race-based health disparity. While White women in Chicago are slightly more likely than Black women in Chicago to get breast cancer, Black women are twice as likely to die from it. As legal scholar Dorothy Roberts has noted, what is most shocking about this fact is that the Black/White gap emerged after 1980, when public awareness of breast cancer was at an apex and when there were great advances in detection and treatment (2011, 123). What happened between 1980 and the turn of the twenty-first century to widen the gap between White and Black women’s breast cancer outcomes? If we were to think in narrow terms about race, we might be tempted to explore genetic (or epigenetic) differences as a symbol of what many people believe to be the biological differences among racial groups.

A different approach is to think about the social context that produces racial disparities, which in turn involves thinking about race and racial dynamics as socially constructed. In Chicago, that means understanding the difference in access to health care that White and non-White women typically receive. When Roberts interviewed Dr. Steven Whitman, whose research first documented the breast cancer survival disparity, she did so in his office at Mount Sinai Hospital, which she described as small and shabby and without air conditioning. Roberts noted that the hospital is located in "an all-black community called North Lawndale on Chicago’s West Side, a block from the border of South Lawndale, which is predominantly Mexican . . . The patient population