Mixed Race Studies

The Meanings of “Race” in the New Genomics: Implications for Health Disparities Research

Yale Journal of Health Policy, Law, and Ethics
Volume 1, Issue 1 (2001)
pages 33-76

Sandra Soo-Jin Lee, Senior Research Scholar
Stanford Center for Biomedical Ethics
Stanford University

Joanna Mountain, Assistant Professor of Anthropological Genetics
Stanford University

Barbara A. Koenig, Professor of Biomedical Ethics and of Medicine at the College of Medicine, Mayo Clinic;
Affiliate Faculty of the Center for Bioethics, University of Minnesota, Minneapolis;
Stanford Center for Biomedical Ethics, Stanford University

Eliminating the well-documented health disparities found within the United States population is a laudable public policy goal. Social justice demands that we understand the sources of health inequality in order to eliminate them. A central dilemma is: To what extent are health disparities the result of unequal distribution of resources, and thus a consequence of varied socioeconomic status (or blatant racism), and to what extent are inequities in health status the result of inherent characteristics of individuals defined as ethnically or racially different? How we conceptualize and talk about race when we ask these questions has profound moral consequences. Prior to the Human Genome Project (HGP), scientific efforts to understand the nature of biological differences were unsophisticated. The new technologies for genomic analysis will likely transform our thinking about human disease and difference, offering the promise of in-depth studies of disease incidence and its variations across human populations. In her opening remarks at a meeting of the President’s Cancer Panel, which focused on health disparities in cancer treatment in the United States, Dr. Karen Antman noted that racial differences in cancer rates have been reported for decades, “but for the first time, science now has the opportunity to quantify such differences genetically.” Will the light refracted through the prism of genomic knowledge illuminate straightforward explanations of disease etiology, offering simple solutions to health inequalities? Or are there consequences, currently hidden in the shadows, that require our attention?

The challenge is then to analyze the causes of racism while avoiding the implication that race exists.
-Steven Miles, 1993

A foolish consistency is the hobgoblin of little minds, adored by little statesmen and philosophers and divines.
-Ralph Waldo Emerson, “Self-Reliance,” 1841

Eliminating the well-documented health disparities found within the United States population is a laudable public policy goal. Social justice demands that we understand the sources of health inequality in order to eliminate them. A central dilemma is: To what extent are health disparities the result of unequal distribution of resources, and thus a consequence of varied socioeconomic status (or blatant racism), and to what extent are inequities in health status the result of inherent characteristics of individuals defined as ethnically or racially different? How we conceptualize and talk about race when we ask these questions has profound moral consequences.

Prior to the Human Genome Project (HGP), scientific efforts to understand the nature of biological differences were unsophisticated. The new technologies for genomic analysis will likely transform our thinking about human disease and difference, offering the promise of in-depth studies of disease incidence and its variations across human populations. In her opening remarks at a meeting of the President’s Cancer Panel, which focused on health disparities in cancer treatment in the United States, Dr. Karen Antman noted that racial differences in cancer rates have been reported for decades, “but for the first time, science now has the opportunity to quantify such differences genetically.” Will the light refracted through the prism of genomic knowledge illuminate straightforward explanations of disease etiology, offering simple solutions to health inequalities? Or are there consequences, currently hidden in the shadows, that require our attention?…

…Increasing ability to detect genetic mutations linked to disease susceptibility has not been paralleled by therapeutic discoveries. This disjuncture has contributed to the conflict about population-based testing and disagreement about the calculus of the largely unknown risks and benefits to individuals and populations. Knowing one has a BRCA mutation does not mean that one will ultimately develop cancer. Individuals must interpret complex, uncertain information to make sense of their cancer risk, and are often confused as to how to make sense of genetic information. The additional burden of contemplating the ramifications of targeted testing of their community, including the possibility of categorical discrimination and prejudice, is a daunting challenge. The mutations found most commonly among those of Ashkenazi ancestry were identified by chance. Blood stored for other purposes, notably screening for Tay Sachs, a heritable disease, was available for research. Other mutations in the BRCA-1 and BRCA-2 genes are specific to certain groups, generally isolated populations such as those in Iceland or Finland. How will knowledge that common diseases are associated with socially identifiable populations affect the treatment of those individuals? But more importantly, how will an increasingly sophisticated knowledge of molecular genetics affect our understanding of the nature of “difference” among human groups?…

…In this paper we provide a strong critique of the continued use of race as a legitimate scientific variable. We offer an historical analysis of how the concept of race has changed in the United States and discuss the reification of race in health research. We discuss how genetic technology has been deployed in “proving” racial identity, and describe the consequences of locating human identity in the genes. The implications of the continued use of race in the new genomic medicine—in particular the creation of racialized diseases—is highlighted. We warn about the consequences of a shift toward population-based care, including targeted genetic screening for racially identified “at-risk” groups, including the potential for stigmatization and discrimination. A less commonly identified hazard is the epistemological turn towards genetic reductionism. We suggest that the application of a naive genetic determinism will not only reinforce the idea that discrete human races exist, but will divert attention from the complex environmental, behavioral, and social factors contributing to an excess burden of illness among certain segments of the diverse U.S. population. The intersection of the genomics revolution with the health disparities initiative should serve as a catalyst to a long overdue public policy debate about the appropriate use of the race concept in
biomedical research and clinical practice…

Read the entire article here.

Doing Race: 21 Essays for the 21st Century

W. W. Norton and Company
April 2010
590 pages
6.2 × 9.3 in
Paperback ISBN: 978-0-393-93070-2

Hazel Rose Markus (Editor)
Stanford University

Paula M. L. Moya (Editor)
Stanford University

A collection of new essays, written by a team of interdisciplinary authors, that gives a comprehensive introduction to race and ethnicity.

In Doing Race, scholars from across the disciplines have written original essays on race and ethnicity aimed at an undergraduate audience. The book provides a practical response to the view, common in American debates, that race and ethnicity no longer matter, or that race and ethnicity should not be taken into account when deciding how to structure society and formulate public policy. It also answers the question of why race and ethnicity play such a large role in fueling violence around the globe.

Doing Race shows that race and ethnicity matter because they are important resources in answering the fundamental, even universal “Who am I?” and “Who are we?” questions. It demonstrates how understanding how identities are shaped by race and ethnicity is central to understanding individual and collective behavior in the United States and throughout the world.

Drawing on the latest science and scholarship, these original essays provide undergraduates with an effective framework for understanding the persistence of racial inequalities and problems in the 21st century.

Table of Contents:

Introduction: Doing Race

Hazel Rose Markus

and

Paula M. L. Moya

Part I: Inventing Race and Ethnicity

• Defining Race and Ethnicity: The Constitution, the Court, and the Census, C. Matthew Snipp, Sociology
• Models of American Ethnic Relations: Hierarchy, Assimilation, and Pluralism, George Fredrickson, History
• The Biology of Ancestry: DNA, Genomic Variation, and Race, Marcus W. Feldman, Biology
• Which Differences Make a Difference? Race, Health, and DNA, Barbara Koenig, Medical Anthropology

Part II: Racing Difference

• The Jew as the Original ‘Other’: Difference, Antisemitism, and Race, Aron Rodrigue, History
• Knowing the ‘Other’: Arabs, Islam, and the West, Joel Beinin, History
• Eternally Foreign: Asian Americans, History, and Race, Gordon H. Chang, History
• A Thoroughly Modern Concept: Ethnic Cleansing, Genocide, and the State, Norman M. Naimark, History

Part III: Institutionalizing Difference

• Race in the News: Stereotypes, Political Campaigns, and Market-Based Journalism, Shanto Iyengar, Communication and Political Science
• Going Back to Compton: Real Estate, Racial Politics, and Black-Brown Relations, Albert M. Camarillo, History
• Structured for Failure: Race, Resources, and Student Achievement, Linda Darling-Hammond, Education
• Racialized Mass Incarceration: Poverty, Prejudice, and Punishment, Lawrence D. Bobo and Victor Thompson, Sociology

Part IV: Racing Identity

• Who Am I? Race, Ethnicity, and Identity, Hazel Rose Markus, Psychology
• In the Air Between Us: Stereotypes, Identity, and Achievement, Claude M. Steele, Psychology
• Ways of Being White: Privilege, Stigma, and Transcendence, Monica McDermott, Sociology
• Blacks as Criminal, Blacks as Apes: Race, Representation, and Social Justice, Jennifer L. Eberhardt, Psychology
• We’re Honoring You Dude: Myths, Mascots, and American Indians, Stephanie Fryberg and Alisha Watts, Psychology

Part V: Re-presenting Reality

• Another Way to Be: Women of Color, Literature, and Myth, Paula M. L. Moya, English
• Hiphop and Race: Blackness, Language, and Creativity, Marcyliena Morgan and Dawn-Elissa Fischer, African and African American Studies and Africana Studies
• The ‘Ethno-Ambiguo Hostility Syndrome’: Mixed-Race, Identity, and Popular Culture, Michele Elam, English
• ‘We wear the mask’: Performance, Social Dramas, and Race, Harry Elam, Drama