Brazilian Miscegenation: Disease as Social Metaphor

Posted in Brazil, Caribbean/Latin America, Health/Medicine/Genetics, Media Archive, Papers/Presentations, Social Science on 2012-06-01 03:28Z by Steven

Brazilian Miscegenation: Disease as Social Metaphor

2012 Congress of the Latin American Studies Association
San Francisco, California May 23-26, 2012
23 pages

Okezi T. Otovo, Assistant Professor of History
University of Vermont

Brazilian medicine of the 19th and early 20th centuries had a peculiar cultural relationship to disease. Certain debates consistently recurred as disease experts typically argued that Brazil was uniquely prone to higher manifestations of particular diseases or that its cultural and social milieu (or the deficiency thereof) gave universal diseases distinctive local contours – making certain diseases exceptionally Brazilian. Many considered disease to be one of the most critical issues facing Brazilian society, and disease was wrapped up in strange and often unexpected ways with intellectual and cultural understandings of Brazilian nationality. Disease became a way of understanding Brazil itself, as it was considered either the cause or effect of social phenomena as well as the expression of various “truths” or “problems” of class, race, and gender. As one prominent physician proclaimed, the entire nation of Brazil was a “vast hospital” where epidemic and endemic disease were the rule rather than the exception.

One of the most fascinating sites for analyzing these trends is the cultural history of syphilis between the mid-19th and mid-20th centuries, a period of great transition in which the end of slavery and empire triggered new anxieties about Brazil’s ranking amongst so-called “civilized” nations. Transmission of syphilis emerged as a major medical concern at the time as the disease was labeled a significant cause of Brazilian degeneracy, compromising the future of both nation and nationality. According to leading physicians, syphilis—like tuberculosis, Chagas disease, and alcoholism—was a disease that weakened the race and prevented Brazil from achieving its full economic potential. Physicians also worried that certain Brazilian traditions, such as the widespread use of black wet-nurses to nourish infants, contributed to the spread of syphilis and thus to the larger crisis of degeneracy. Domestic servitude and syphilis became intertwined in a certain medical dialogue that reflected changing debates about race, nation, and “progress.”

Among domestics, the figure of the black wet-nurse, the mãe preta or literally the “black mother,” is an iconic character in Brazil. This cultural veneration of the mãe preta, however, only dates back to the early 20th century when she became a folkloric symbol of harmonious and intimate relationships between white and black Brazilians. In the 1800s, at least in medical discourse, the wet-nurse was a more sinister figure whose ignorance and irresponsibility threatened the health of the infants in her care and whose transmission of syphilis through breast milk caused their premature deaths. This version of the wet-nurse as contagion did not completely disappear with the dawn of the new century; it existed alongside the newly created figure of the beloved wet-nurse of old. Yet her contagions in 20th century literature were much more likely to be expressed in cultural terms, rather than in racial ones. That is, whatever deficiencies or diseases she represented were the result of social problems rather than her African heritage. Brazilian intellectualism was by then emerging from the pessimistic trap of climatic and racial determinism and reaching a more optimistic consensus. Physicians increasingly agreed that the “problematic” demographics and racially-integrated social relations of which the wet-nurse was a part did not necessarily doom the nation to incurable backwardness.

Physicians never argued that wet-nursing was the sole or even the primary cause of syphilis in Brazil although they did consider wet-nursing to be one of the principal methods of transmission to children. By the late 19th century, prominent physicians at Brazil’s two medical schools—in Bahia and in Rio de Janeiro—identified high infant mortality rates as a major impediment to national “progress” and urged governmental action. This article examines broad Brazilian patterns, while emphasizing the state of Bahia from which the majority of evidence for this analysis is taken. The rising concern over the supposed dangers of wet-nursing was one element of this new attention to infant health, yet the alarm over wet-nursing as a mode of transmitting syphilis, in particular, held greater significance as it united various intellectual strains on race, gender, sexuality, and nation. The heightened medical interest in syphilis and servitude reflected tensions related to political and social change in the late 19th century and to Brazil’s long-standing anxieties over race. Brazilian slavery’s slow death was finally complete in 1888 and the monarchy fell apart soon after, leaving intellectuals and politicians to ponder how the new Brazil could take its rightful place amongst the community of modern 20th century nations without the institution of slavery which had organized social, political, productive, and even familial relations for centuries. During this period, and well into the 20th century, intellectuals produced a wealth of medical scholarship, social science, and political treatises analyzing the contemporary state of Brazilian “civilization” and prescribing measures that would ensure a stronger nation in the future, populated by a supposedly better class of Brazilians. The issue of race was at the center of all of these debates as it was at the center of medical discourse about syphilis and servitude.

By the early 20th century, Brazilian intellectuals, including physicians, had reached a uniquely Brazilian “solution” to their racial anxieties in the face of universally negative assessments of the political and economic potential of predominantly black and mixed-race tropical nations. According to these new homegrown theories, Brazil’s racial composition may have created certain social complications, such as the prominence of diseases like syphilis, but it should not be considered an insurmountable obstacle if the nation could “whiten” itself both biologically and culturally. Renowned scholar Gilberto Freyre, and others, went even further than this already optimistic assessment by asserting that biological and cultural miscegenation was Brazil’s distinguishing feature and that each “primordial” race had made significant contributions to the national “character.” Freyre’s ideas are treated in detail at the end of this analysis because his highly influential work posited that the enslaved black wet-nurses and nursemaids of the colonial and imperial periods were principle characters in Brazil’s historical narrative: maternal figures that culturally and biologically united the descendants of the slave masters and the descendants of the slaves. Freyre’s arguments best illustrate this new faith in Brazil’s potential. Rather than being plagued by some inherent weakness or “mestiço degeneracy” as 19th century intellectualism claimed, Brazil’s cultural and racial hybridity embodied the best of diverse elements. This type of theorizing was clear in medical discourse as well, but none of it meant that physicians abandoned the notion that there was a problematic side to their blended society. Caregivers could still be incompetent, servants sexually promiscuous, and all disease-ridden.

With a spate of new literature, the medical understanding of syphilis was color-coded in novel ways in the early years of the new century, as experts began to see the disease as a result of a uniquely Brazilian hypersexuality that resulted from historical and contemporary race relations. While the wet-nurse became an important symbol of Brazilian cultural miscegenation, syphilis was implicated in the nation’s biological miscegenation. Miscegenation, therefore, was ironically both an asset to Brazil’s cultural development and a symptom of the excessive sexuality that kept Brazil behind more “civilized” nations. The concern over race and servitude took on an updated medicalized tone in the early 20th century, turning away from the explicitly racist 19th century theories and embracing more modern ways of thinking about social “problems” and degeneracy through disease. Thus, despite Brazilian medicine’s adoption of many French medical theories, this history of the domestic servitude, syphilis, and medical discourse is fundamentally Brazilian and not simply the story of the transfer of medical ideas and racial theories across national borders. Through debates about syphilis, public health, and family welfare, experts theorized about what the reorganization of society post-slavery and empire and the assumed loosening of deeply entrenched hierarchies would mean in medical terms for Brazilian development…

Read the entire paper here.

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Sequencing the Trellis: The Production of Race in the New Human Genomics

Posted in Dissertations, Health/Medicine/Genetics, Media Archive on 2012-05-22 13:39Z by Steven

Sequencing the Trellis: The Production of Race in the New Human Genomics

Brown University
December 2003
185 pages

Brady Dunklee, Executive Director
ATRAVES US

In partial completion of the requirements for honors.

Note on the Title: “Trellis” refers to an analogy that NHGRI director Francis Collins uses to describe race and human evolution, emphasizing mixture between “races,” in opposition to evolutionary trees which emphasize divergence. “Sequencing” refers to the main activity of recent genomic research, and is meant to suggest both this activity and the differentiation of groups of people, which is the subject of this thesis.

Human genomic science has emerged in the past decade as a powerful new biological field, combining molecular and population genetics with advanced information technologies, allowing DNA sequencing and analysis in a rapid, high throughput fashion. In addition to producing a vast quantity of scientific data, the Human Genome Project and other efforts in human genomics have produced claims about the social implications of their work. The result has been a complex expert discourse on the nature of the human.

A particularly rich subset of this discourse has addressed the meanings, use and reality of race and ethnicity in light of new genomic knowledge. A great variety of positions on racial and ethnic difference have been put forth, best known of which is the contention that race is biologically meaningless.

This thesis shows that this claim is not the whole story. Genomic discourse has, since its beginnings, deployed and produced race in a constant, if variegated manner. A “technology of difference” has been produced, a set of terms, meanings, and ways in which knowledge is structured and authorized, whose collective action is to differentiate people racially and ethnically.

This thesis examines this technology of difference, showing that genomics is in fact making race, and demonstrating some of the ways in which it does so. My approach is an analysis of discourse, which addresses terminology, formal configurations and epistemology in the literatures produced by genomic scientists. The dominant characteristic in this discourse is instability. Meanings, forms, and claims shift and change on a variety of levels.

This thesis shows that surprising patterns can be seen in this instability, and that instability is itself a constitutive factor giving strength and cohesion to the genomic production of human racial and ethnic difference.

I suggest, further, that now is a crucial time for interventions to be made in the genomics of human difference. Those who want an end to race, or who want positive, livable transformations of race, can find both opportunity and danger in these new differentiations.

Table of Contents

  • Title Page
  • Dedication
  • Acknowledgements
  • Table of Contents
  • Table of Figures
  • Inscriptions
  • Thesis Statement…………………………………………………………………
  • Introduction……………………………………………………………………………
    • I. Unifications
    • II. Divisions
    • III. Contexts
    • IV. Materials and Methods
  • Chapter 1: Categories and Keywords in the Genomics of Race
    • I. Transferals
    • II. “Race” and “Ethnicity”
    • III. Populations, Groups and Communities
    • IV. “Minorities” and “Inclusion”
    • VI. Chapter Summary
  • Chapter 2: Formal Configurations: Nested Proxies & Perspectival Phasing
    • I. Theoretical Framework
    • II. Making Difference Within Race
    • III. Making Difference Around Race
  • Chapter 3: Instability and Discourse
    • I. Reading and Writing
    • II. Articulate Instability
  • Chapter 4: Epistemology……………………………………………………………
    • I. Definitions and Methods
    • II. One Drop
    • III. White Normativity
    • IV. Racial Essentialism
    • V. Three Spaces
  • Conclusion…………………………………………………………………………
  • Bibliography

Table of Figures

  • Figure I-1— Craig Venter of Celera Genomics, left, shakes hands with Francis Collins of NHGRI, right, at a ceremony at the White House, June 2000.
  • Figure I-2 — Cover of Nature, February 15, 2001. The mosaic includes the faces of Mendel, Watson and the Beatles.
  • Figure I-3 — Stills from “Exploring Our Molecular Selves,” a film produced by NHGRI as part of a free educational toolkit for high school students.
  • Figure 1-1 — “Populations” and Race: “Not everyone’s smiling. A plan to study haplotypes in these populations is prompting angry words.”
  • Figure 2-1 — Diagram of racial schema in Risch, et al. (2002).
  • Figure 2-2 — Perspectival Differentiation in Collins (2003).
  • Figure 4-1 — One Drop Rule and Founding Populations in genomics.

…At first glance, the appearance of these types of anti-race critiques appears to frustrate an attempt to theorize a mainstream of genomic ideas about race and ethnicity—they simply appear contradictory. It is my contention that they are contradictory on significant levels, but that they share a terminology, a set of discursive patterns, and a certain epistemology that allow them to resolve such contradictions, and unite them in making race.

Even when the term race is used as a “misconception,” race is configured in new ways with respect to genomic knowledge. Race is produced, as an entity that is purely mythical and controverted by this expert discourse. Race is made by genomicists into something new which is not genomic…

Read the entire thesis here.

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Medicating Race: Heart Disease and Durable Preoccupations with Difference

Posted in Dissertations, Health/Medicine/Genetics, History, Media Archive, Politics/Public Policy, United States on 2012-05-21 22:04Z by Steven

Medicating Race: Heart Disease and Durable Preoccupations with Difference

Massachusetts Institute of Technology
2007
250 pages

Anne Pollock, Assistant Professor of Science, Technology and Culture
Georgia Institute of Technology, Atlanta, Georgia

Submitted to the Program in Science, Technology and Society In Partial Fulfillment of the Requirements of the Degree of Doctor of Philosophy in the History and Social Study of Science and Technology At the Massachusetts Institute of Technology

This dissertation is an examination of intersections of race, pharmaceuticals, and heart disease over the course of the 20th century and today. Each of these parts has had a dynamic history, and when they are invoked together they provide a terrain for arguments about interventions in health and in justice in the present.

An enduring aspect of discourses of heart disease over the past century has been articulating connections between characterizations of the modem American way of life and of heart disease. In that process, heart disease research and practice has participated in differentiating Americans, especially by race. This dissertation uses heart disease categories and the drugs prescribed for them as windows into racialized medicine.

The chapters are organized in a way that is roughly chronological, beginning with the emergence of cardiology as a specialty just before World War II and the landmark longitudinal Framingham Heart Study that began shortly thereafter. A central chapter tracks the emergence and mobilization of African American hypertension as a disease category since the 1960s. Two final chapters attend to current racial invocations of two pharmaceuticals: thiazide and BiDil. Using methods from critical historiography of race, anthropology, and science studies, this thesis provides an account of race in medicine with interdisciplinary relevance.

By attending to continuities and discontinuities over the period, this thesis illustrates that race in heart disease research and practice has been a durable preoccupation. Racialized medicine has used epistemologically eclectic notions of race, drawing variously on heterogeneous aspects that are both material and semiotic. This underlying ambiguity is central to the productivity of the recorded category of race. American practices of medicating race have also been mediating it, arbitrating and intervening on new and renewed articulations of inclusion and difference in democratic and racialized American ways of life.

Table of Contents

  • Abstract
  • Acknowledgements
  • Chapter 1: Introduction
  • Chapter 2: Preoccupations with Racialized Modernity in Early Cardiology
  • Chapter 3: Constructing and Supplementing Framingham’s Normal White Americans: The Framingham and Jackson Heart Studies
  • Chapter 4: The Durability of African American Hypertension as a Disease Category
  • Chapter 5: Thiazide and Racialization of a Generic Drug
  • Chapter 6: BiDil: Medi©ating the Intersection of Race and Heart Failure
  • Epilogue: Tracking Plural Noninnocent Discourses
  • Works Cited

…Early Framingham investigators did their research in an all-white population, but they participated in larger conversations about black/white differences, too. The Framingham investigators themselves participated in the simultaneous constructions of hypertension and African American hypertension in the 1960s, an era that saw the ascendance both of hypertension as a risk factor and of the Civil Rights Movement. Their own study’s lack of inclusion of African Americans did not preclude their participation in arguments about racial differences in hypertension. Addressing “Environmental Factors in Hypertension” in a 1967 publication, the investigators wrote:

The principal population groups among whom blood pressures have been reported to be lower than among Americans and Europeans are various primitive peoples. The sample size has usually been small, especially in the older ages, and conclusions about age trends are complicated both by this fact, and by the fact that it is often not possible to accurately determine the age of the subjects. Among those population groups studied adequately, the following may be said:

Blood pressure distributions are similar among such diverse groups as: Caucasians living in Europe, the United States, and the West Indies; among Chinese living in Taiwan, and among Japanese in Japan.

Negro populations have higher blood pressures than whites living in the same areas and studied by the same investigators, particularly among females and in the older age groups. Distributions of blood pressures among Negro populations living in the United States and in the West Indies, whether rural or urban, high or low salt eaters, are similar. Their blood pressures are higher than those of Negroes in Liberia, a principal source of Negro migration to the Western Hemisphere. Admixture of the Negro races in the Western Hemisphere makes the interpretation of this data difficult. It is in this general background of unencouraging experience that the study of particular environmental factors, which could conceivably affect the blood pressure level, must be approached.

I will return to the question of African American Hypertension as a disease category in Chapter 4, but for now attend to other aspects of this quote. Here, we can see the distance between direct evidence or argument and the invocation of a common sense of racialization of cardiovascular disease. Although their phrasing evokes neutral grammars of data, there are no citations or evidence for these assertions about “Negro populations,” suggesting that the authors conceive of these statements less as arguments than as reflecting the consensus of the field. Unable to grapple with the embodied admixture that is not merely biological but also historical and cultural, much history is paved over in word choices such as “migration” to describe the slave trade and “admixture” to describe oppressive sexual relations under slavery.

Paucity of data is not actually the problem. The investigators make an odd claim about the cause of the difficulty of research into environmental causes of racial disease disparities: that “admixture” gets in the way of interpretation. Logically, assimilation would be the kind of mixing that would pose a problem for separating out environmental causes of disease by race, but the investigators lacked a language for cultural, in addition to biological admixture. The peculiarity of the investigators’ framing should alert us both to the fact of racialized hypertension’s existence at the nexus of the biological and the environmental, and that Framingham is telling both a white story and a universal one…

Read the entire dissertation here.

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A Racialized Medical Genomics: Shiny, Bright and Wrong

Posted in Articles, Health/Medicine/Genetics, Media Archive on 2012-05-21 21:41Z by Steven

A Racialized Medical Genomics: Shiny, Bright and Wrong

RACE-The Power of an Illusion
July 2005

Robert Wallace, Postdoctoral Fellow
Public Health Phylogeography
Department of Ecology and Evolutionary Biology
University of California, Irvine

Armand Marie Leroi announces in his Times op-ed that race is biologically real (New York Times, March 14, 2005). The crusty trope that race is a social artifact crumbles in the face of the bright new genomics, he asserts. Genetic variation may be greater within groups than between groups, as Richard Lewontin pointed out back in the dark ages of the 1970s, but only for single genes. Taken together, across genetic loci allelic distributions correlate into clusters long recognized as the five races: European, East Asian, African, Amerindian, and Australasian. So suck it up, constructionists, race is biologically intrinsic.

Moreover, get out of the way. The recognition that race is inherently biological, Leroi writes, can improve medical care, “as different races are prone to different diseases.” African Americans, for example, suffer greater prevalences of heart disease and prostate cancer. Even if such differences arise from socioeconomic causes, Leroi argues, we should—ignoring the man behind the curtain—embrace geneticists’ very important mission, “searching for racial differences in the frequencies of genetic variants that cause diseases.”

And yet much of Leroi’s article unravels his own argument. Leroi takes population geneticists to task for caving into political correctness by investigating “ethnic groups,” a euphemism that conflates human differences across scale. Never mind that population geneticists prefer the term less out of deference to present sensibilities than to the data themselves. Work by Luigi Cavalli-Sforza’s group (Cavalli-Sforza 2001, Underhill 2003), among others, show human history—back to our species’ origins—to be marked by layers of migration sweeping back and forth across the continents, gurgling here and there into local pools of idiosyncratic admixture. While the resulting genetic frequencies do not embody a homogenous mush, neither does a stark black and white favored by the new racialists result. Instead, genetic maps are marked by fine-scaled and functionally important population gradients…

…For one, according to Leroi, the pharmaceutical companies. As race can affect medical treatment, “many new drugs are now labeled with warnings that they may not work in some ethnic or racial groups.” That such effects need not be predominantly biological in origin apparently matters little. Leroi admits differences among races arise from population averages alone. But as we are unlikely to have individuals’ genomes sequenced any time soon, and presumably won’t be able to individualize medical treatment that way, we’ll just have to accept a racialized medical genetics. Nothing like an argument of expediency to convince a crowd. The pharmaceutical companies are doing it, so get with it, baby!

Here, Leroi, an evolutionary developmental biologist, bumbles back into the typology the Darwinian revolution revoked. As Ernst Mayr (1976, 2004) explained, until the early 19th century biologists classified species in essentialist terms. A specific type or specimen defined a species and any variation from the type was considered deviant or unreal. In statistical terms, a centroid measure such as the mean phenotype defined the species, while the variance was thought noise. Typological definitions accounted for the differences among species and, without variation, explained the impossibility of evolution.

Darwin and his colleagues turned biology on its head. The population thinking they introduced emphasized the variation in populations. As natural history studies accumulated, it became apparent individual organisms varied in just about any and all characteristics, both across and within species. Individuals even changed over the course of their lifespans. Here, averages became thought of as constructs and the variances the reality. Variation’s reality proved fundamental to Darwin’s natural selection. The greater the variation in the population, the faster natural selection works and adaptations arise…

Read the entire article here.

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“Racially-Tailored” Medicine Unraveled

Posted in Articles, Health/Medicine/Genetics, Law, Media Archive, Politics/Public Policy, Social Science, United States on 2012-05-21 20:56Z by Steven

“Racially-Tailored” Medicine Unraveled

American University Law Review
Volume 55, Number 2 (December 2005)
pages 395-452

Sharona Hoffman, Professor of Law, Professor of Bioethics, and Associate Director of the Law-Medicine Center
Case Western Reserve University School of Law

Table of Contents

  • Introduction
  • I. “Race-Based” Research and Therapeutic Practices
    • A. The Story of BiDil
    • B. “Race-Based” Research
    • C. A Growing Interest in “Race-Based” Medicine: Why Now?
  • II. Does “Race” Mean Anything?
    • A. “Race” in the Medical and Social Sciences
    • B. “Race” and the Law
    • C. Shifting the Focus Away from “Race”
  • III. The Dangers of “Racial Profiling” in Medicine
    • A. Medical Mistakes
    • B. Stigmatization and Discrimination
    • C. Exacerbation of Health Disparities
  • IV. Violation of Anti-Discrimination Provisions
    • A. Constitution and Federal Civil Rights Laws
    • B. State Laws Prohibiting Discrimination in the Medical Arena
      • 1. Civil rights statutes
      • 2. Hospital and medical facility licensing requirements
      • 3. Patients’ bill of rights laws
      • 4. Public services regulation
      • 5. Insurance codes
    • C. Violation of Research Regulations and Guidelines
      • 1. NIH policy and guidelines
      • 2. Federal research regulations
    • D. Discrimination Theory
  • V. Recommendations
    • A. Review of Research Studies by Scientific Review Boards and IRBs
      • 1. Scientific reviews
      • 2. Institutional review boards
    • B. Investigators and Health Care Providers
    • C. Public Discourse Concerning Attribute-Based Medicine:The Responsibilities of Investigators, Institutions, and the Media
  • Conclusion

Introduction

F.D.A. Approves a Heart Drug for African-Americans. This June 2005 headline announced the arrival of BiDil, a heart failure edication that is approved for African-Americans only. BiDil is the first drug in pharmaceutical history that will constitute standard therapy for only one particular “race.”Health care professionals are becoming increasingly interested in “racebased” medicine in the research and therapeutic contexts. Many researchers are attempting to discern “racial” differences in disease manifestation, biological functioning, and therapeutic response rates. As this approach develops, physicians may prescribe different dosages of medication for people of separate “races” or may provide them with entirely different drugs. In light of the success of BiDil, investigators are also likely to pursue the development of additional “racially-tailored” medications. In fact, several academic and professional conferences have already devoted significant time to the discussion of “race-based” medicine. On April 18, 2005, the University of Minnesota hosted aconference entitled Proposals for the Responsible Use of Racial & Ethnic Categories in Biomedical Research: Where Do We Go From Here? Likewise, the Eighth World Congress on Clinical Pharmacology and Therapeutics, held in 2004 in Brisbane, Australia, devoted an afternoon to ethnopharmacology.While “racial profiling” in medicine has generated significant discussion in medical and bioethics circles, it has thus far gained relatively little attention in legal literature. This Article aims to develop the discourse concerning this important topic. It argues that “race-based” medicine is an inappropriate and perilous approach. The argument is rooted partly in the fact that the concept of “race” is elusive and has no reliable definition in medical science, the social sciences, and the law.  Does “race” mean color, national origin, continent of origin, culture, or something else? What about the millions of Americans who are of mixed ancestral origins—to what “race” do they belong? To the extent that “race” means “color” in colloquial parlance, should physicians decide what testing to conduct or treatment to provide based simply on their visual judgment of the patient’s skin tone? “Race,” consequently, does not constitute a valid and sensible foundation for research or therapeutic decision-making.

Further, this Article contends that “racial profiling” in medicine can be dangerous to public health and welfare. A focus on “race,” whatever its meaning in the physician’s eye, can lead to medical mistakes if the doctor misjudges the patient’s ancestral identity or fails to recall that a particular condition affects several vulnerable groups and not just one “race.” The phenomenon can also lead to stigmatization and discrimination in the workplace and elsewhere if the public perceives certain “races” as more diseased or more difficult to treat than others. In addition, “racial profiling” could exacerbate health disparities by creating opportunities for health professionals to specialize in treating only one “race” or to provide different and inferior treatment to certain minorities. It could also intensify African-Americans’ distrust of the medical profession. Finally, “race-based” medicine might violate numerous anti-discrimination provisions contained in federal law, state law, and federal research regulations and guidelines…

…The Article will proceed as follows. Part I of the Article will describe “race-based” research and therapeutic practices and will examine the growing interest in “race-based” medicine and the reasons for it. Part II will argue that “race” is a concept that has no coherent meaning and that is potentially pernicious. Part III will focus on the dangers of “raciallytailored” medicine, and Part IV will analyze a variety of anti-discrimination mandates that could potentially be violated by the practice. Finally, Part V will detail recommendations for the development of attribute-based medicine in a manner that will promote the health and welfare of all population groups…

…This Article argues against substantial use of the concept of “race” in medical settings. A primary reason for this restriction is that “race” has no coherent meaning, and therefore, reliance upon it for research or treatment purposes can be confusing at best and can lead to significant adverse consequences at worst. This section will build the argument that based on medical science, the social sciences, and the law, “race” has no reliable definition or real meaning. Moreover, it is a pernicious concept that has been used to suggest that human beings can be divided into subspecies, some of which are morally, intellectually, and physically inferior to others. Thus, medical professionals should focus on more precise and meaningful aspects of human identity rather than on the amorphous concept of “race.”…

Read the entire article here.

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English R1A: Keeping it Real?: Racial & Queer Passing in American Literature

Posted in Course Offerings, Health/Medicine/Genetics, Literary/Artistic Criticism, Media Archive, Passing on 2012-05-20 03:54Z by Steven

English R1A: Keeping it Real?: Racial & Queer Passing in American Literature

University of California, Berkeley
Fall 2010

Rosa Marti­nez

“I had a literature rather than a personality, a set of fictions about myself.”
Kafka Was the Rage by Anatole Broyard

This course intends to explore the “art” of racial passing and masquerade in American literature and culture through a diverse sample of American novels and short stories, such as traditional narratives of black-to-white passing, which is historically prevalent particularly in African-American literature, and other modes of passing, for instance gender and ethnic ambiguity as well as posing and the “closeting” of one’s sexuality. What are the connections or disjunctions between “closeting,” posing, and crossing the gender or color line? By focusing on the trope of the passing figure, we will ask how people and imagined characters negotiate their identity in various and varying social spaces and also, how authors disclose the frailty of social order regarding sexuality, race and the body to make alliances in unimagined ways. Venturing out of the closet as another and as they please, these passing figures are, indeed, queer. Yet what are the personal costs in relinquishing a disfavored identity for a favored one?

This course intends to hone your reading and writing skills, and will focus on helping you make thoughtful questioning and “interesting use of the texts you read in the essays you write.” Through a gradual process of outlining, rewriting and revising, you will produce 32 pages of written work (including brief response papers and three 3-4 page argumentative essays).

Book List

Álvar Núñez Cabeza de Vaca, Naufragios (1542); William and Ellen Craft, Running a Thousand Miles for Freedom (1860); Joseph Harris, Rewriting (2006); Nella Larsen, Passing (1929); Mark Twain, Pudd’nhead Wilson (1894); a course reader containing critical readings.

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Race Decoded: The Genomic Fight for Social Justice

Posted in Books, Health/Medicine/Genetics, Media Archive, Monographs, Politics/Public Policy on 2012-05-17 02:22Z by Steven

Race Decoded: The Genomic Fight for Social Justice

Stanford University Press
April 2012
280 pages
Cloth ISBN: 9780804774079
Paper ISBN: 9780804774086
E-book: ISBN: 9780804782050

Catherine Bliss, Assistant Professor of Sociology
University of California, San Francisco

Winner of the 2014 Oliver Cromwell Cox Award, sponsored by the ASA Section on Racial and Ethnic Minorities.

In 2000, with the success of the Human Genome Project, scientists declared the death of race in biology and medicine. But within five years, many of these same scientists had reversed course and embarked upon a new hunt for the biological meaning of race. Drawing on personal interviews and life stories, Race Decoded takes us into the world of elite genome scientists—including Francis Collins, director of the NIH; Craig Venter, the first person to create a synthetic genome; and Spencer Wells, National Geographic Society explorer-in-residence, among others—to show how and why they are formulating new ways of thinking about race.

In this original exploration, Catherine Bliss reveals a paradigm shift, both at the level of science and society, from colorblindness to racial consciousness. Scientists have been fighting older understandings of race in biology while simultaneously promoting a new grand-scale program of minority inclusion. In selecting research topics or considering research design, scientists routinely draw upon personal experience of race to push the public to think about race as a biosocial entity, and even those of the most privileged racial and social backgrounds incorporate identity politics in the scientific process. Though individual scientists may view their positions differently—whether as a black civil rights activist or a white bench scientist—all stakeholders in the scientific debates are drawing on memories of racial discrimination to fashion a science-based activism to fight for social justice.

Table of Contents

  • Acknowledgments
  • Introduction
  • 1. The New Science of Race
  • 2. Making Science Racial
  • 3. The Sociogenomic Paradigm
  • 4. Making Sense of Race with Values
  • 5. Everyday Race-Positive
  • 6. Activism and Expertise
  • 7. The Enduring Trouble with Race
  • Notes
  • Index
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How Culture and Science Make Race “Genetic”: Motives and Strategies for Discrete Categorization of the Continuous and Heterogeneous

Posted in Articles, Health/Medicine/Genetics, Media Archive on 2012-05-16 03:43Z by Steven

How Culture and Science Make Race “Genetic”: Motives and Strategies for Discrete Categorization of the Continuous and Heterogeneous

Literature and Medicine
Volume 26, Number 1 (Spring 2007)
pages 240–268
DOI: 10.1353/lm.2008.0000

Celeste Condit, Distinguished Research Professor
University of Georgia

Scientists, medical personnel, and others have recently re-asserted the equivalence of human genetic variation and social categories of “race”. This essay identifies strong cultural and scientific motives for creating, defending, and deploying that equivalence. However, the essay employs visual depictions of human genetic variation and critical analysis of scientific and lay vocabularies to show that human genetic variation has a complex structure that cannot be directly fit into a simple category set of race terms. The essay suggests that efforts to equate patterns of human genetic variation and social terms for “race” rely on the rhetorical strategies of casuistic stretching and the deployment of a mediating term through a two-step argumentative structure. The essay closes by discussing the difficulties involved in implementing social policies based on this procrustean category system, utilizing the case of the “race-based” heart disease drug Bi-Dil.

One of the most contentious issues in contemporary genetics is the status of the concept of “race.” Critics of the research program in human genomics regularly cite the historical and contemporary associations between racism and genetics as a reason to be suspicious or non-supportive of genetic research. These criticisms operate on varying underlying assumptions about the nature of science and its relationship to culture. The predominant account, however, holds that science is the handmaiden of the dominant forces in the culture. In this account, because genetic science is a tool of the dominant forces in society, which are structured in a racist fashion, genetic science is predetermined to support racism. Substantial research in science studies has complicated the account of the relationship between science and culture, but the topic of racism and genetics has only recently begun to receive similarly sophisticated attention. I wish to contribute to this on-going exploration by analyzing the processes by which and the motives for which race terms are fit to the patterns of human genetic variation by scientists and medical research personnel.

My essay presumes and shows that human genetic variation has a complex structure that cannot be directly fit into a simple category set of race terms. Nevertheless, the essay identifies strong cultural and scientific motives for creating, defending, and deploying such a set of terms to describe that variation. Given the tension between the nature of human genetic variation and the scientific vocabularies proposed to define it, the essay reveals two specific rhetorical strategies used by scientific proponents of such categorization: casuistic stretching and the deployment of a mediating term through a two-step argumentative structure.

The essay proceeds in five movements. The first briefly overviews the historical trajectory of the naming of race in the U.S. The second enumerates the diverse motive structures that drive the contemporary categorization of human genetic variation into “race” groups, focusing particularly on the work of Neil Risch and his colleagues. The next provides a conceptually- and visually-based depiction of the nature of human genetic variation that highlights its clinal and brecciated character.  The essay then offers an analysis of the rhetorical strategies by which these heterogeneous and continuous materials are organized into simple, discrete categories by the scientific proponents of a biological foundation for “race.” In the final movement, the essay discusses the difficulties involved in implementing social policies based on this procrustean category system. It examines the case of the “race-based” heart disease drug BiDil to suggest that the inherent slippages in the category system make proposed programs of race-based medicine unworkable, but that they will also mask the failures of such initiatives…

…This inherent variability suggests that programs in race-based medicine are doomed to failure, at least to the extent that they are presumed to be based on underlying genetics. Figures 1–3 remind us that genetic heterogeneity among people who have relatively recent African ancestry is greater than anywhere in the world. Although this heterogeneity may have been reduced in African Americans by geographically selective and forced migration, it is re-enhanced by admixture. The “Black” population in the U.S. is also continually diversifying, as recent migrants come from other parts of Africa or from the Carribbean, where different patterns of migration and admixture have existed. Consequently, it is not reasonable to expect that dark skinned people as a group will respond to a particular drug more uniformly than the broader population, based on their skin color alone. If BiDil really does work better for African Americans (in the narrow range of parts of the country where it has been systematically tested) its beneficial effects will more likely result from shared experience of social discrimination than from shared genes. But BiDil’s success will be used as evidence to support what everybody believes—or fears—that Black people are genetically different from White people, in ways that truly matter.

BiDil’s failures will also be masked by the ambiguities of language. Doctors will not know to which patients they should prescribe BiDil. How dark should your skin be before you are a candidate for this medicine? If you have brown skin, but self-identify as “African American,” do you get the drug? What if you are dark skinned, but self-identify as Caribbean? What if your grandfather was from Ireland but your other relatives were from Sierra Leone? What if you are a recent immigrant from Ethiopia? The genetic ambiguities are blackwashed with a simple label: “Black” (or is it “African American”?). The promoters of the idea that people can be grouped into genetically discrete piles called “races” will never have to face the fact that these clinical problems invalidate their views. Whether a drug does or does not work for an “African American” with an Irish grandparent will not be attributed to the fact that the labels don’t work. It will be dismissed as irrelevant on the grounds that no medication works all the time, even for a targeted group. Only if BiDil proves to have a relatively high rate of fatal or serious side effects will it face real scrutiny. Only then will the spectre of the Tuskegee Syphilis study return. Even its return, however, will probably further reify “Black” against “White” rather than call into question the underlying assumptions that human beings can be placed into discrete genetic categories and treated based on those categories instead of the unique genetic constellation that each person represents….

Read the entire article here.

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A Medical Humanities Perspective On Racial Borderlands

Posted in Articles, Barack Obama, Health/Medicine/Genetics, Social Science, United States on 2012-05-16 02:47Z by Steven

A Medical Humanities Perspective On Racial Borderlands

Literature, Arts and Medicine Blog
2008-06-30

Felice Aull, Ph.D., M.A., Associate Professor of Physiology and Neuroscience; Editor in Chief, Literature, Arts, and Medicine Database
New York University School of Medicine

I have long been interested in the metaphor of borderlands as a tool for exploring areas of ambiguity in medicine and in society. Courses that I teach (to medical students) consider ambiguous boundaries between student and professional, patient and physician, personal life and professional life, disease and health, and the cultural confusion that derives from migration and dislocation. I address those issues using theory from the social sciences and humanities in addition to fiction, memoir, poetry, and art. One of the topics that we consider is the ambiguity inherent in concepts of race. This has become a topic of recent interest (and controversy) because race, medical research and practice, and health policy are being linked with the genomics revolution. And since all of these endeavors take place in a sociopolitical context, recent events and discussions in the national political scene cannot help but play a role in our thinking about these topics. With this as background, I offer some thoughts triggered by a recent confluence of events.

The events

  1. The presumptive nomination of Barack Obama as the Democratic Party’s choice for president.
  2. The March, 2008, announcement that the National Institutes of Health established the Intramural Center for Genomics and Health Disparities, whose priority is to “understand how we can use the tools of genomics to address some of the issues we see with health disparities.”
  3. Publication in the journal, Literature and Medicine, of “How Culture and Science Make Race ‘Genetic’: Motives and Strategies for Discrete Categorization of the Continuous and Heterogeneous,” by Celeste Condit. (26/1, Spring 2007 pp.240-268).

What is race?

Because Barack Obama was chosen to be the presidential candidate of a major political party, much has been made of the advances this country has made in racial tolerance and acceptance. Yet the fact that so much attention is being given to the racial component of the upcoming election emphasizes that race and color are still important in the national narrative. Obama personifies the contradictions and fallacies of the way we traditionally think about race. Born in Hawaii to a “white” American woman and a “black” man from the African country of Kenya, Obama is identified by virtually everyone as “African American” and black, although he is culturally atypical in that he is not descended from US slaves. He himself for the most part accepts that designation but he has consistently sought to move beyond race and has even been described as “post-racial.” In this country Obama is virtually forced to identify as African American because he is so identified by almost anyone who notices the color of his skin. Mr. Obama could not identify himself publicly as a white American or as “Caucasian,” even though his ancestry is as much white as it is black. He could not “pass” as white, simply because we tend to equate skin color and other physical characteristics with something that many call “race.”…

…Race-based medicine…

In my teaching I used the recent penetrating article by Celeste Condit in Literature and Medicine (event #3 above) to consider concepts of race and race-based medicine. Condit lays out the background for the current interest in race-based medicine and then proceeds systematically to demonstrate that the complexity of human genetic variation can not be fit into discrete categories like race or what is more often now discussed as continent of origin and gene clusters. She marshals the evidence that “there are no discrete boundaries among groups; instead there are slowly changing [gene] flows” (p. 253). And here is why this essay appeared in a journal of literature and medicine: Condit asserts that language “is always predisposed toward discreteness and binarity” and that we cannot wrap our minds around “any single word or visual map that could capture the 3 million different patterns of difference [in the 3 million base pairs in the human genome that vary]” (250). In addition, Condit argues that the notion that “human genetic variation partitions people into ‘races’ ” is a two-step [probably unconscious] rhetorical strategy that claims (1) gene clustering coincides with continental boundaries and (2) continents coincide with five historically designated racial categories(254). She shows how verbal manipulation is involved in mapping genetic clusters with five continental groupings and then enumerates the many ways that racial designations fluctuate and do not consistently correspond with the five groupings or with genetic clusters…

Read the entire essay here.

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Taking racism into account does not mean refusing to collect and classify data in medical research according to race and ethnicity.

Posted in Excerpts/Quotes, Health/Medicine/Genetics on 2012-05-13 18:38Z by Steven

Taking racism into account does not mean refusing to collect and classify data in medical research according to race and ethnicity. On the contrary, those classifications provide important epidemiological information, as Risch et al. maintain, about the impact of social and environmental factors—including socio-economic inequities and cultural biases—on the health of individuals and groups. As Troy Duster argues, the way to ‘recognize, engage, and clarify the complexity of the interaction between any taxonomies of race and biological, neurophysiological, society, and health outcomes’ is to consider ‘how science studies deploy the concept of race’. The story of how biotechnology is revolutionizing medicine has put genomic research very much into public consciousness and has made genetic explanations of health disparities among individuals and especially groups the ‘default position’. Distinguishing between genomic and social and environmental factors in disease susceptibility and drug response is notoriously difficult, especially since, as Keita et al. note, ‘some environmental influences can be so subtle and occur so early in life as to be missed . . . ’. Yet, that distinction determines how researchers and practitioners understand and address the problem of health disparities. ‘Race’ and ‘ethnicity’ are very different as surrogates for genomics and for social and environmental factors in the assessment of health outcomes, which is why the larger stories in which the research is embedded are scientifically and medically as well as socially relevant.

Priscilla Wald, “Blood and stories: how genomics is rewriting race, medicine and human history,” Patterns of Prejudice, Volume 40, Numbers 4/5 (2006): 316.

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