The Material Gene

Gender, Race, and Heredity after the Human Genome Project

Kelly E. Happe

• Publisher: NYU Press
• Year: 2013
• ISBN:
  9780814790694
• Topic: Sciences sociales
• Subtopic: Sociologie

Winner of the 2014 Diamond Anniversary Book Award

Finalist for the 2014 National Communications Association Critical and Cultural Studies Division Book of the Year Award

In 2000, the National Human Genome Research Institute announced the completion of a “draft” of the human genome, the sequence information of nearly all 3 billion base pairs of DNA. Since then, interest in the hereditary basis of disease has increased considerably. In The Material Gene, Kelly E. Happe considers the broad implications of this development by treating “heredity” as both a scientific and political concept. Beginning with the argument that eugenics was an ideological project that recast the problems of industrialization as pathologies of gender, race, and class, the book traces the legacy of this ideology in contemporary practices of genomics. Delving into the discrete and often obscure epistemologies and discursive practices of genomic scientists, Happe maps the ways in which the hereditarian body, one that is also normatively gendered and racialized, is the new site whereby economic injustice, environmental pollution, racism, and sexism are implicitly reinterpreted as pathologies of genes and by extension, the bodies they inhabit. Comparing genomic approaches to medicine and public health with discourses of epidemiology, social movements, and humanistic theories of the body and society, The Material Gene reworks our common assumption of what might count as effective, just, and socially transformative notions of health and disease.

1
Ideology and the New Rhetoric of Genomics

In a 1999 article in the journal Plastic and Reconstructive Surgery, a surgical team describes the case of “A.H.,” a patient who undergoes an eleven-hour operation to remove her breasts, ovaries, and uterus. The surgery also included the reconstruction of breasts using skin and tissue from various parts of her body. In all, the surgery involved three separate surgical teams and was divided into four stages. After a four-day hospital stay, A.H. was released; she underwent additional procedures on her breasts over the next seven months.

Although narrated in the matter-of-fact clinical language of the case report, the surgery was, in fact, radical, even gruesome, and the article included photographs of her body from the neck down with the customary markings of the plastic surgeon, noting the location of various incisions and cuts necessary to refashion her physique. Such surgery requires, the report informs us, “significant recovery time.”¹ The authors of the report predict that the procedure will extend the life of A.H. by four to six years “or more,” even though the decision model they employ assumes that there is a complete mastectomy and no reconstruction (which in fact A.H. had), and that the patient tolerates, and complies with treatment during many years of potentially dangerous hormone replacement therapy.

What sort of disease would necessitate such interventions? As it turns out, no disease at all, at least not in the conventional sense of the term. A.H. did not have cancer, nor did she have any symptoms of diseases related to the reproductive organs. The surgery was attributed, rather, to a positive test for a mutation of one of the so-called “BRCA” genes—in this case, a mutation of BRCA2.² Inheriting a mutation of one of these genes increases a woman’s risk for breast and ovarian cancer. A.H.’s surgery was performed for the sole purpose of reducing her risk for both. Many women who have publicly shared their experiences with the test and subsequent surgery say that the BRCA test empowered them to make life-saving decisions. Prophylactic surgery does decrease risk for some women, and those who choose this surgery do so with the knowledge that cancer treatments can inflict far more violence on a woman’s body (knowledge they often gleaned as they witnessed the struggles of loved ones). And as far as ovarian cancer is concerned, most women do not have the privilege of considering treatment with any likelihood of success—over 60 percent of women diagnosed with the disease do not survive it. Mindful of the concerns of bioethicists, advocates of BRCA screening claim that expanded genetic counseling and restrictions on direct-to-consumer marketing can help prevent the unnecessary administration of BRCA tests. In the long term, they say, the genomics revolution in women’s cancer care will lead to better detection and prevention and to less invasive treatment, both for the small percentage of women with BRCA mutations and those without them.

This perspective on testing and surgery, although important to the development of best practices in law and medicine, is ultimately limited by the pragmatism on which it depends for coherence.³ Following in the traditions of rhetoric, feminism, and cultural studies, the present book asks instead, how do we theorize and historicize medical discourse and practice amid the material reality of disease that otherwise compels us to act? How do we think of heredity and disease not as recalcitrant material realities discovered by researchers and physicians, but as contingent manifestations of the lived experience of social worlds? Why does the integration of genomics into medicine and public health in particular require us to think of disease in this way? And what methodological tools are necessary and sufficient for the task?

As these questions suggest, I take the story of A.H. to be more than one woman’s struggle with cancer prevention; it is, rather, an artifact of a larger social discourse about the body and the world that body inhabits. Epistemologically and rhetorically, genomics effects the dematerialization of the body and its embeddedness in historically specific environments when biological matter is translated into the language of gene sequences and risk assessment. The body becomes just so much information. Yet the body rematerializes when genomics must make fathomable and palpable the body at risk, both to fashion medical subjects and to engage in the making of procedural rules and norms necessary to formalize and routinize particular sets of interventions. Because bodies are always already culturally inscribed—Katherine Hayles calls this the outcome of ideological transcription practices⁴—genomics is dependent on normative conceptions of the gendered, raced, and bounded body. As Catherine Waldby reminds us, “Biomedical knowledge cannot... be quarantined from general ideas operative in the culture, even when it understands its concepts to be carefully and directly deduced from the factual evidence of the body. Despite, or perhaps because of, biomedicine’s assertion of its own innocence of historical and political meaning, it constantly absorbs, translates and recirculates ‘non-scientific’ ideas—ideas about sexuality, about social order, about culture—in its technical discourses.”⁵

Not only must genomics rely on cultural discourses about the body to translate genetic information into body practices, but in doing so it will in turn participate in their construction. It thus contributes to our shared meanings of race, gender, and embodied life. Indeed, the very conditions of intelligibility on which the story of A.H. depends in both popular and scholarly discourse rest on hidden, and heretofore underexamined, assumptions about gender, race, and political economy. Family history aside, A.H., through the visualization and objectification of her body, is removed from any context that might allow for a consideration of why the female medical subject figures so prominently in the genomics revolution; how gender and race determine whether the removal of her organs is the rational way to prevent cancer; whether her genomic profile is simultaneously a racialized one; and whether the risk she fears is appropriately construed as an inborn trait.

We must interrogate these otherwise mystified embodied materialities to understand not only how the normative body mediates the translation of inherited risk into actual biomedical practices, but also how biomedical theories and the social and economic order inform each other. The chapters that follow thus recontextualize the body of A.H. and theorize its materiality within a cultural, economic, and political context. In so doing, the book explores genomics’ implicit investment in the very norms and values on which its translation into medicine and public health depend. A central argument of the book is that explicit ideological appeals are no longer required for genomics, and biomedicine more broadly, to shore up the values of the free market, the racism of biological types, and the antifeminism of the conflation of gender and sex. Rather, the means by which genomics performs this ideological work (and, indeed, how it serves its own institutional interests) has along with shifts in gender and racial politics, social movements, and political economy. I attempt to explain this ideological work by mapping—and problematizing—a logic of progression emerging from developments both internal and external to genomics.

Genomics, the Body, and the Economic and Social Order

In this book, I examine a variety of research projects on women and cancer in order to reconsider genomics’ relationship to its eugenics past. By doing so, I challenge the received view that the science and politics of eugenics can be neatly circumscribed within a particular historical era and that any residual effects of its legacy can be attributed to a few individual scientists who continue to search for the biological inferiority of women, blacks, and other minority groups. I argue, instead, that a hereditarian ideology and concomitant regressive politics has been a historical constant, informing various incarnations of genetics over the past hundred years.

My analysis begins in the early twentieth century, framing eugenics as an early example of genomics’ explanatory capacity to attribute the causes of material and social inequalities to the pathologies of particular bodies. During the progressive era, the scientistic worldview of genetics cast the biological sciences as salvation from the extreme poverty, civil unrest, and overall exploitation associated with industrialization; the material consequences of the Industrial Revolution, so the narrative went, were really the products of unfit breeding. Of particular significance was the fact that middle-class consumers of eugenics discourse could—like their middle-class professional counterparts in the sciences—espouse a worldview that identified them neither with the upper class nor with workers, the poor, or immigrants. Instead, genetic engineering, whether through positive or negative eugenics (propagating or violently repressing particular traits), could produce better behaved leaders and followers alike. Although the critique of unfettered capitalism was a defining feature of eugenics discourse, the latter nevertheless recuperated the fundamental values of the free market by displacing the struggle for redistribution of resources with the technological interventions of science. The eugenics period thus provides an early example of how genetics advanced its methodologies (for example, by taking seriously for the first time theories of Mendelian inheritance) while simultaneously taking part in the formation of a depoliticized, dehistoricized view of social change.

It is this feature of eugenics discourse—not the specific claims it made about the science of heredity or the pathological behaviors it could explain—that necessitates its figuring in any critical account of genetics today. As I will show throughout the book, genetics never abandoned its investment in the normalization of bodies and the larger social and economic order, even as it set out to reinvent itself after the demise of the eugenics movement. However, since genomics is no longer articulated to explicit political projects like eugenics and its close cousin social Darwinism, we must consider how hereditarian ideology is located in what Sandra Harding, following Fredric Jameson, calls science’s “political unconscious.”⁶ For Harding, science’s cognitive core—the collection of theories, models, tools, and norms that guide its practices—is never merely that. Rather, embedded within those practices is a politics, an investment in a particular arrangement of social relations outside the confines of the research setting. Responding to what she says is the myth that “inegalitarian political projects remain external to fundamentally value-free scientific assumptions, methods, and claims,” she argues that science is always already ideological, even when it passes the highest standards of methodological excellence and explicitly distances itself from culture, politics, and political economy.⁷ A closely related concept is Sheila Jasanoff’s notion of “co-production,” a novel take on knowledge making in scientific research that “calls attention to the social dimensions of cognitive commitments and understandings, while at the same time underscoring the epistemic and material correlates of social formations.”⁸ Thus science is also a form of social knowledge,⁹ but with a set of epistemological practices and discourses unique to it.

The concepts “political unconscious” and “co-production” together capture the complex relationship that institutions have with each other and with the social and economic order.¹⁰ These relations are not always direct or easily mapped. Instead, they manifest themselves as a form of ontological or ideological complicity—separate fields of discourse that are semi-autonomous (and so are characterized by epistemological practices unique to them), but nevertheless permeable to and thereby shaped by historically resilient dominant interests and their cultural logics.¹¹

Throughout the book I show how, through an institutional discourse of health and healing, the political unconscious of genomics—its hereditarianism—has become more difficult to locate and map but nevertheless remains a powerful method for naturalizing social and economic relations. Human genetics’ insinuation into the provinces of medicine and public health has been one of the most effective means by which it claims to be free of such interests. Having retreated to the world of the laboratory after the demise of the eugenics movement, genetics was once again revitalized with the publication of new research demonstrating the heritability of disease, now more narrowly defined to exclude the behavioral traits favored by its eugenics predecessors. More recently, the Human Genome Project (HGP) has promised to revolutionize medical and public health practice by making heredity central to understanding and modifying disease etiology.

Nevertheless, even though genomics is concerned principally with disease, and not with the behaviors or political leanings of its subjects, it is no less invested in particular economic and social arrangements. My argument rests on the notion that disease exceeds, both symbolically and materially, mere physiological changes that distinguish the normal from the pathological state of the body—the absence or presence of a breast cancer tumor, for instance. Rather, disease may be said to reveal how oppression gets “under the skin.”¹² Class, for instance, is the “best predictor of life expectancy, of old-age disability, or [of] the frequency of heart attacks. As a predictor of coronary disease, it is better to measure class position than to measure cholesterol.”¹³ The lived experience of race is very much connected to hypertension and particular types of cancers. Gender explains how experiences in the natural and social world influence the kinds of diseases women are more likely than men to struggle with; furthermore, it overdetermines the kinds of treatments that women will be offered.

This model of disease as the materialization of embodied life is displaced—conceptually and in terms of research dollars—by genomics’ explanation of disease patterns as the product of genes.¹⁴ The genes with which genomics are concerned are, theoretically, alleles of populations, not sexes or races; but because the object of genomics in medicine is the body, heredity inevitably becomes bound up with these very categories. The specific displacement that obtains in genomics discourse is the privileging of a diachronic understanding of race and gender insofar as it assumes these bodily attributes to be traits that are passed on from one generation to the next.¹⁵ Even when gene function is qualified to include the role of environmental factors, hereditarianism typically compels a diachronic analysis of the body and disease: genes are inherited at birth, and the evolutionary history of this transmission is what substantiates bodily narratives. And to a large extent, the stability of genetic substance (there are few genes, relatively speaking, in human DNA, and the durability of haplotypes is what has made genetic mapping even possible) overdetermines meanings of the gene, even in those models that purport to give due consideration to the agency of environmental contexts.

The synchronic view, in contrast, holds that gender and race are descriptors of lived and embodied experience, and as such are inextricably bound with political, social, and economic structures.¹⁶ A synchronic view of race, for example, would require an examination of social isolation, geography, and what critical race scholars call “microaggression”—the relentless exposure to small acts of racial prejudice on an everyday basis.¹⁷ And it would treat these variables as historically contingent, materializing in ways particular to a given place and time. What does it mean, for example, to embody racial identity in a specific geographic location, during a particular stage of capitalism, and within historically specific practices of institutional racism? And with these questions in mind, what does it mean to embody sex?

These different models of the body and disease matter not only because of the kinds of biomedical practices they call forth (what science studies scholars have called the inextricable link between representing and intervening)¹⁸ but also because describing bodily attributes in synchronic terms makes possible a particular kind of agency and accountability—namely, a call for changes in economic and social policy as a way to effectively deal with health inequities. Genomics’ privileging of the diachronic over the synchronic thus reveals a logical homology between its practices and the political discourses that rely on such a displacement. As Jasanoff says of “co-production,” the “ways in which we know and represent the world (both nature and society) are inseparable from the ways in which we choose to live in it.”¹⁹

Genomics is by no means alone in privileging a diachronic reading of the body and disease—I will show that, in many ways, it has acted as the successor to epidemiological discourse that has trafficked in the idea that the body can be broken down into proximate, isolatable, and static components. Indeed, biopolitics scholars have quite persuasively questioned the very notion of health. Genomics has not, however, enabled the types of progressive discourses that epidemiology has.²⁰ Heredity, I will suggest, is overdetermined by its eugenics legacy—a cultural logic that translates the pathologies of economic and social relations into pathologies of bodies—inherited at birth and immune to change.²¹ The chapters of the book together examine how this logic is introduced and what is at stake by a...