Bioetbnicity and the Genetics of Inequality
Explaining how race comes to be a site of commonsense truth claims, popular truth claims, and scientific truth claims about diabetes and human difference writ large is one of the aims of this book. Race and nature, or at times race as nature, comprise an assemblage of productive associative relationships, as Donald Moore and colleagues rightly aver, that are at once material and semiotic. That is, there are real social relationships that affect us all, that are shaped by and that shape the way we work, play, live, and learn while also molding our experiences and our understandings of our world. Scientists, Mexicana/o DNA donors, fieldworkers, and health professionals of all types are participants in the composition of this social milieu. These sometimes novel and at other times socially reproductive composites require an explanation of their articulated formations when and where they appear. Here I have aimed to build upon the insights of Moore and his colleagues with an analysis that details the ways “race and nature are constitutive features of modern power.”1 What captures my attention in this book is the uneasy terrain of a scientific milieu in which racial politics of difference, and dare I say cultural politics of meaning, are impossibly entangled in liberal humanism, community development, identity politics, disease prevention, careful scientific practices, and sincere concerns about the health of the chronically underserved and disenfranchised.
In this realm, a critical politics of race that is discernable in the diabetes enterprise requires an attention to more than critical analytics of modernity and power. Offering such a critique of the diabetes enterprise might be satisfying, but it ends where it must begin. It is precisely the ways old and new meanings of racial difference emerge in the production of biogenetic knowledge making forged from new and not so new technoscientific practices and processes that is the challenge before us. In other words, understanding power, the productive and reproductive structures, objects and meanings that emanate out of technoscience, cannot occur if we already predefine the cultural politics we expect to find. A serious analysis of all things racial, especially in the United States, amply demonstrates that Moore and colleagues are correct to place social injustice and political technologies of violence at the center of their analytic of race and nature.
My project seeks a slightly different path without diminishing the power analysis of race in the twenty-first century. It seeks to produce an account of a specific articulation of race that demonstrates why and how our critical analytics, no matter how convinced we are of their validity, have failed to interrupt the nonrandom patterns of injustices and inequities that are always already embedded in all things racial and racialized at this historical moment. In other words, what requires explanation are not the processes and practices that technoscientists reiterate in the making of the three or five “races of man.” Although necessary, this is an unsatisfactory level of resolution if we are to understand and transform those material and semiotic assemblages that perpetuate inequity. Rather, what demands explanations are why this occurs in spite of the scientific, ethical, social, and political consequences so carefully detailed by scholars and analysts from a spectrum of fields across the social and biological sciences and humanities.
Diseases that involve complex gene-gene-environment interactions (e.g., asthma, diabetes, heart disease, cancers, etc.) are the next frontier for genetic medicine. However, the Mendelian gold rush of the previous single-gene model has given way to an infinitely more complex scientific venture. Researchers must now transform “the environment” and at-risk “populations” into variables that fit biological analyses while keeping in mind the speculative futures of potential drug markets, public health concerns, and individual scientific career imperatives. Whether carried out in the name of genetics, public health, molecular epidemiology, epigenetics, or some other epistemological assemblage, there is no built-in protection from the deployment of knowledge claims or artifacts that amplify rather than redress inequity. The antipolitical effects of reductionism, determinism, scientism, biologization, or other crude links between genotype and phenotype, individuals and groups, or biology and human illness remain even under the most careful of human intentions. The specific effects of this constellation of social and biophysical forces have been discussed in the preceding chapters. This concluding chapter reexamines the use of racialized population DNA in diabetes research and evaluates the broader social consequences of complex disease research in the postgenomic era.
In their erudite treatment of classifications, Bowker and Star detail the hermeneutic circle that helps bundle the various slices of race, genes, and diabetes detailed in the preceding chapters.2 Drawing upon Cicourel’s3 observation that researchers begin with broad classification schemata that are expected to fit the data and then elaborate those categories as if they were derived from the data in the first place, they write,
There is no simple unraveling of the built information landscape, or, pace Zen practice, of unsettling our habits at every waking moment. The moral questions arise when the categories of the powerful become the taken for granted; when policy decisions are layered into inaccessible technological structures; when one group’s visibility comes at the expense of another’s suffering.4
To be sure, the conundrum of race, of disease, of “the Mexicano/a” within the social milieu that I have called the diabetes enterprise naturalizes unequal power relations. However, the moral questions, the “gotcha politick” of epistemological critique, are by now tired exemplars of interventions into the problems of race in science. I have attempted here to detail the ethical and scientific conundrums of race within the social milieu of the diabetes enterprise. And I have attempted to do so in a manner that makes it difficult to simply dismiss diabetes genetics and complex disease genetics in general, opting instead at explaining how race comes to be thought and made material. As the barrage of race-based medical findings with genes de jour indicate, pointing out the consequences (ethical, moral, scientific, logical) in themselves have been pathetically unsuccessful in raising the discussion of biological variation beyond shouting matches and finger pointing. What, then, has this project attempted to contribute to the problematic bundling of race, science, medicine, and “Mexicanness” within the diabetes enterprise?
The preceding chapters examined various aspects of the academic-, corporate-, and state-funded alliance of molecular, biological, computer, and clinical scientists who are conducting research into the genetic epidemiology of type 2 diabetes. We saw that because type 2 diabetes affects populations differently, researchers use racial taxonomies to parse populations and social history to rationalize their categorical choices. However, in spite of the use of racial labels for the populations used for research, it was clear that a simplistic reproduction of biological subspecies arguments does not occur in diabetes epidemiology. Still, Durkheim and Mauss observed, “Every classification implies a hierarchical order.”5 Unearthing that order is the easy part. Explaining how that order produces classification systems and, more systemically, produces types of people to fit certain politically configured classification systems is the greater challenge of this book.
By following DNA from Chicago back to its point of acquisition along the border, we were able to reassemble the cultural meanings that are produced and then concealed in diabetes knowledge productive practices. Pertinent to the critiques of reductionism, determinism, and essentialism, it was shown that the use of population-based data sets by researchers results in critically nuanced reiterations of human variation that blend past and present arrangements of social inequality into future-oriented scientific knowledge. Such reiterations do not biologize race per se. Rather, they prepackage diabetes data sets in a manner that is easily translated into representations that construct de facto biological differences between human groups labeled with social categories.
The analytical tack taken here has been to examine the process of diabetes knowledge production through various stages of research. Beginning with the identification of populations to be sampled, the prepackaging of ethnicity fits long-standing patterns of so called “race” relations along the U.S.-Mexico border. The relationships between Mexicanas/os and Anglos have been structured by dispossession, exploitation, war, and white supremacy. Anglo institutions such as settlement, agribusiness, and now science demonstrate a consistent pattern of extracting value from the bodies of Mexicanas/os. The diabetes enterprise differs only in the level and ontological framework of its exploitation. Instead of an external enemy whose land was needed or an unwanted Other from whom cheap labor could be extracted, diabetes science requires Mexicana/o bodies as a source of cheap embodied biocapital to accomplish its objectives.6
Yet, because this new entrepreneurial force imposed upon Mexicanas/os is biomedical, it has different requirements but with similar results. First, Mexicanas/os are reduced to a form of ethnic purity through the collection of genetic pedigrees and the homogeneity presumed of the Sun County population. This is the initiatory moment of the reductionism critiqued by the authors cited above. However, it is not the science per se, isolated from the culture in which it is produced, that imposes the reductionistic consequences. It is the constellation of social and historical relationships between Anglos and Mexicanas/os in the border region that prefigures the Mexicana/o population. That is, what is crucial here are the linkages between the racialized justifications for discrimination and dispossession7 and the emergence of a people who are cast as biologically informative for diabetes research. To reiterate, the scientists are not reducing Mexicanas/os to a pure ethnic stock; the reductionism existed even before the public health workers identified the higher diabetes risks in the population.
Perhaps the most dynamic aspect to the use of racialized DNA samples within this biogenetic enterprise is that the racial and ethnic identity ascribed to the donor populations is made to do symbolic labor. The conditions of a donor’s life, those events that shaped his or her physiological condition and the social and political history that attached itself to the donor’s life in the form of an ethnic identity, are deployed to serve the biogenetic disease enterprise. In the preceding chapters, we have seen the multifold ways through which the symbolic enrollment of “Mexicanness” transpires within the products of diabetes research. It must be noted that it is not “race,” the fictive biological concept, that is being conscripted. Rather, it is the social and political formation that configures donors’ bodies as different, in this case “98 percent Mexican American,” that is conscripted into the diabetes genetic enterprise. The social configuration of Mexicans, as distinct from other social groups (most notably Anglos in the Southwest) is drafted into the material and symbolic service of the biogenetic enterprise as a necessary part of producing diabetes knowledge and its hoped-for downstream pharmaceutical products.
Instead of academic arguments on whether racialized groups create de facto biological subspecies or biologically distinct human groups labeled with folk taxonomies, it should be recognized that the uptake of ethnicity into biological science creates something new, what I call “bioethnicity.” Operating at the confluence of biology and society, bioethnicity simply recognizes that biological races do not exist and that all knowledge derived from racialized populations is in fact the social histories and life conditions of those populations pressed into service of biomedical discourse. For diabetics on the U.S.-Mexico border, it is thus the history of migration, of reproduction, of transformation in labor and agribusiness production, and the nutritional, emotional, and physiological burdens of war, poverty, racialized violence, and prejudice that are being refracted within these particular biomedical knowledge claims. Of course, also embedded in this knowledge are the myriad ways that Sun County Mexicanas/os have created successful thriving lives in spite of all these challenges.
Thus “bioethnicity” is a term that does not presume a difference between biology and society. It more accurately expresses the class of racialized thing produced within biomedical discourse that is, like all such things, a sociocultural conception. Bioethnicity is what González Burchard and colleagues8 explicitly attempt to “discover” by finding the biological basis for parsing ethnic groups, and it is what “Mexicana/o” means within the diabetes research milieu. Technically, each use of bioethnicity should be examined for its particular biologistical configuration. If, for example, a researcher is simply using a label to describe a specific group, and that use is not meant as proxy for anything other than that specific group, and the biological variation of that group is merely an estimate based upon the continuous clinal distribution of biogenetic variance that has resulted from drift, flow, founder effects, bottlenecks, selective or other evolutionary pressures, then the search for biological human variation and the use of a descriptive label for the population under examination should not warrant concern. However, the problem with this set of qualifications is that they are rarely part of a scientific claim about biogenetic human variation.9
Thus, having sampled Mexicanas/os for the diabetes genetic epidemiological enterprise, Mexicana/o ethnicity is conscripted into the capital-intensive research apparatus. What I have termed “bioethnic conscription” is a process whereby the descriptor of a population is conflated with an attribute of that population. Another way to explain this slippage is that in preparing a data set for use in biomedical enterprise, Carl and his colleagues must translate the descriptive statistical profile of Mexicanas/os in Sun County into the raw material suitable for experimental analyses. The process of preparing the DNA samples for various experiments is the site of such translation. While it travels through the mail to Nora or any other collaborator, the DNA sample loses its descriptive nature and is received as if it represented an attribute of the donors’ bodies.
Sociologist Tukufu Zuberi surveyed leading social scientific journals and came to the same conclusions. He writes: “Using racialized census, survey, or other social data is not in and of itself problematic. The racialization of data is an artifact of both the struggle to preserve and to destroy racial stratification. Before the data can be deracialized, we must deracialize the social circumstances that have created racial stratification.”10 This is why Carl’s, Gary’s, and Nora’s good intentions and astute situated interventions fail. There is no doubt that diabetes scientists are genuinely concerned about the welfare of Mexicanas/os. Hence, in spite of Carl’s stated objectives in grant applications and in meeting presentations that his work will benefit those born today by helping to find the causes of diabetes, the unequal impact of diabetes upon Mexicanas/os in his sample will persist. Similarly, Nora’s and Gary’s arguments with Nature Genetics and any other attempts to situate their representations of Mexicana/o bodies provides, at best, ambiguous messages about the causes of diabetes. As long as their research deploys bioethnically conscripted populations, it will support the notion that the differential incidence and prevalence of diabetes among Mexicanas/os is a function of an attribute of their bodies.11
The consequences for this technoscientific process are that disparities of health are converted to biological differences.12 This enclosure of the biological constitutes a sociocultural black-box effect and ensures that social worlds of those who disproportionately experience chronic disease remain irrelevant and extraneous. However, scientists who use bioethnicity in their research cannot be cast as simplistically reductionistic or essentializing. The example I present of the Nature Genetics editor insisting that Nora and Gary title a publication as “Diabetes loci in Mexican Americans” because they didn’t have any Caucasian samples that confirmed their findings shows the complicated ways “race” is taken up in scientific literature. In this case, even though my collaborator-informants knew this to make no genetic sense in view of their findings, they were coerced as a condition of publication—against their vociferous objections—to present their findings as de facto proof of genetic variation between “Caucasians” and “Mexican Americans” as essentialized populations. During revisions, they received confirmation from Finnish and German populations and immediately took the words “Mexican American” out of the title.
However, because Gary and Nora’s primary data set came from a known population labeled as “Mexican Americans,” their polygene discovery is inextricably bound to the array of conditions that made the acquisition of their DNA data set possible. As was discussed in the preceding chapters, the sociological conditions for this include dispossession, war, and labor inequality keyed to the historical and ongoing political and economic exigencies of the Mexico-U.S. frontier. The local conditions include the disposition that engenders sufficient confianza to acquire DNA samples from affected bodies. And the scientific conditions include a well-funded genetics-based science interested in homogeneous populations. Together, these conditions form the constellation of material conditions that are coproduced by the racialized logics of genes, disease, and human variation.
I am not arguing that genetic frequency distributions across populations do not exist. Surely such variation exists. In the case of transplantation, for example, it is precisely these attributes of the person’s body that are sought after. Unlike chronic disease, in which there are acknowledged environmental influences, finding a match for organ or tissue donors is seldom about the context of a donor’s life. For transplantation, there are reasons to genetically screen people or screen people by blood group or by other physiological/biochemical attributes to mitigate an immunological response to the transplantation or transfusion. However, when “race” is used as a selection factor, the need for a physiological attribute (a genetic marker, a blood type, a protein, etc.) is conflated with a descriptor (Asian, African, Caucasian, Mexican) that bears relatively little physiological relationship to the attributes in question. This is especially true of chronic diseases in which social conditions, life experiences, and family history manifest in a local biology.
This study has revealed instances of a slippage in the use of ethnoracial labels from “descriptors” of human groups to “attributes” of human groups. And as we have seen in the preceding chapters, the sociocultural consequences of this slippage are tremendous. It leads the biomedical enterprise to pathologize ethnicity. This then creates the conditions whereby the consumers of such knowledge (physicians, pharma, patients themselves, insurance carriers, “the public”) can easily confuse the descriptor with the attribute. What is more, it obscures the social and the cultural aspects of human variation (identity, language, cultural forms, class, gender, historical experiences, etc.), aspects that are deeply and historically implicated in who gets sick and who does not.
Bioethnicity is a cultural phenomenon bearing no essential connection to physiological attributes of human variation and no origins in the scientific production of knowledge. Racial reductionism was there all along.13 It is not that there is no empirical connection between disease and group membership. There is. But the implicit causal models used to explain why are counterfactual. Genes do not cause chronic disease. Genes in certain bodies under certain conditions contribute to disease susceptibility.
We can observe different prevalence rates between populations. But, affirming Duster’s critique, to then study the disease by examining the differences between populations rather than the different environments is to merely affirm what you already know.14 That researchers continue to do so is the result of the implicit causal model in the biomedical research enterprise: human biological variation drives disease. As the Newsweek article and the Amaryl ad campaigns examined in this book illustrate, whatever is found in the group’s body is associated with the disease, and then group membership itself is associated with the disease.
This book assembles different analytical and epistemological perspectives on the configuration of race, borders, and medical science. The conversations I am entering into include critical race theory; health disparities (epidemiology, public health); critical medical anthropology/sociology; Chicana/o-Latina/o studies, especially assessments of borders and the nation state; and, of course, long-standing anthropological interests in human variation, intergroup relations, and social inequality. It is a project that issues an anthropological challenge. In a complicated field of capital-intensive cultural formation, how are we to conduct research and retheorize our findings in ways that exemplify our disciplinary expertise without foreclosing the linkages to analyses less committed to—and less experienced at—empirically documenting and connecting the quotidian, the particular to the larger social and material forces that coproduce the behaviors, objects, and meanings that occupy our ethnographic attention?
I have tried to refine our understanding of social reproduction in scientific practices without being overly deterministic. To do this requires finding the cracks within and between these analytical perspectives as a way to integrate what I find to be disparate yet isolated conversations. For example, in chapter 5, the dominant ethical discourse of profit sharing was shown to adhere to the logics of possessive individualism and presumes the inherent integrity of the scientific products.15 Value is already generated in the diabetes enterprise, and new commodity forms are produced even though pharmaceuticals are years away from developing drugs based upon physiological and clinical research of the diabetes enterprise. However, I have pointed out that an ethics discourse that misrecognizes the inherently exploitative nature of population use in biomedical research is a function of its epistemological blinders. They are not intentional acts.
Equally important to this account are the ways I have attempted to redress the effects of privilege within the social and cultural studies of science, technology, and medicine and the social and cultural anthropology from which this book is derived. Privilege, like ignorance, is invisible to itself. I have tried to prevent this invisibility in several ways.
First, I have included, as part and parcel of this research, a description of my political and analytical commitments. Reflected in the autobiographical sections in the introduction and in the anti-anti-science conclusions throughout, I have tried to avoid summary dismissals of scientific work simply because I assess it to support racial prejudice or biological reductionism. Like the present project, diabetes knowledges must be understood in context. A scientific claim may inflect ideas of racial prejudice, but not because the scientists are racists. Rather, the assemblages I have examined here invite negative racialized interpretations because of their antipolitical decontextualization. That is, the claims conceal the social conditions of their production and make possible the characterization of Mexicanas/os as a public health threat by virtue of their bioethnicity. Therefore, I have taken great pains to report—affirm, even—the good intentions of diabetes researchers because failure to do so would conflate a description of their practices with an attribute of science and scientists themselves. Doing so would miss the point of this book entirely.
Moreover, this book is constructed as an interdisciplinary project that opens, rather than forecloses, possible applications and readership of its findings. Bridging ethnic studies, history, public health, genetic sciences, anthropology, critical epidemiology, and other fields is an attempt to make possible a cross-grain reading from which common alliances or even sharper areas of disagreement might emerge more clearly. My refusal to cast only in negative terms my collaborators, my commitment to implicate myself as collaborateur,16 and my work to contextualize the diabetes enterprise and this project are meant to open up those spaces of possible intersections between those with overtly different disciplinary, political, and scientific commitments. That is, to understand the problems of knowledge while simultaneously grappling with the knowledge of problems.
My hope for this project is that it illustrates the linkages between disease, capitalism, U.S. race relations, and the organization and production of science. As a study of diabetes, the larger project links the politics of sugar, both blood glucose and cane/beet varieties, to the colonial and thus racial histories that produce it. It examines the U.S.-Mexico border less as a geographic place than as a space of contested boundaries of identity and nation-statehood. This border story, like so many before it, illustrates, albeit in contemporary forms, the ways frontiers are created through racializations, the movement of people and the material and semiotic embodiments that sometimes counter and at other reinforce interethnic conflict.17
This book has also argued that DNA sampling for chronic disease within ethnoracial groups is a highly developed system of appropriation, classification, and technocratic governmentality. As such, the diabetes genetic enterprise may very well be a blueprint for bioprospecting worldwide. Characterized by enclosure of the material and symbolic aspects of the body, supported by the state, funded by multinational corporations, and carried out by a select group of experts in the name of some universal incontrovertible human good, the acquisition and commodification of DNA alienates donors from the social and political context of their lives and reproduces long-standing structural inequities. Symbolically, Judi’s matter of fact “It’s in our blood” reply demonstrates that the social and political determinants of disease are kept from the realm of our descriptions of diabetes etiology, even from those who convince us they know better. Instead, diabetes is seen and thus acted upon not only as biologically determined, but also as wedded to the purported biology of our ethnicity.
Sampling, it is argued, is the grossest form of surplus value accumulation yet invented by capital. In exchange for a few pens, a cotton bag, a monogrammed cup, and some life-saving glucose monitoring, people give their DNA. Meanwhile, mounting evidence exists that if all Mexicanas/os on the Texas-Mexico border had decent health care, access to a full complement of food, and time and space to exercise, they would not likely have diabetes in the first place.18 Yet, we search for the genes because it is, as critics of genetic determinism have observed, one of the few options imaginable.19 As a result, research in critical public health and critical epidemiology must perpetually compete with the emerging genetics stranglehold on explaining disease causality. Further, once Glaxo, Pfizer, Aventis, Squibb, or another launch its diabetes-fighting bioengineered drug with the bioethnically conscripted genetic samples funded by the ADA and the numerous branches of the NIH, the hegemony of genetic notions of curing and disease treatment will be further reinforced.
Finally, this “modest intervention”20 illustrates that such genetic narrations of complex disease biology are profoundly social. Thus, the genetics of diabetes susceptibility among Mexicanas/os and other disadvantaged groups must be understood, at least for now, as genetic differences made meaningful by social, historical, and political processes that affect unevenly distributed rates of disease. In short, what the postgenomic disease gene enterprises “discover” are nothing less than the genetic manifestations of local biology. What they find are the genetics of inequality.