Aids, race and the limits of science

ARTICLE IN PRESS Social Science & Medicine 60 (2005) 2515–2525 www.elsevier.com/locate/socscimed Aids, race and the limits of science Wende Elizabeth Marshall Department of Anthropology, University of Virginia, P.O. Box 400120, Charlottesville, VA 22904, USA Available online 23 December 2004 Abstract In the US, HIV is understood as the virus that causes AIDS, the root of a disease syndrome perceived to indicate an immune system that has ceased to function. These understandings reflect the unquestioned hegemony of Euro/ American scientific knowledge, a hegemony that precludes alternative interpretations of life and death, health and disease. This paper argues that HIV/AIDS is more complicated than biomedicine allows, and that the ‘‘overmedicalization’’ of treatment and prevention efforts obscures the significant socio-cultural and political-economic realities that shape the global pandemic, including conceptions of race. The paper specifically focuses on the discourses of bio- and socio-pathology that link African diasporic communities around the globe, and which often seamlessly articulate with structural locations, producing a coherent narrative in which social and moral positions justify and substantiate one another. The analysis here occurs on both these levels: the discursive and the structural. If we are to understand the complex relationships that form the AIDS epidemic, the disciplinary lines imagined between scientific paradigms and the clinical focus on the individual body on one hand, and the social sciences and humanities disciplines on the other, must be breached. If what we call AIDS is a socio-cultural and political-economic phenomenon with biological manifestations, then it is essential that the insights of the social sciences and humanities be brought to bear on finding solutions to the epidemic. r 2004 Elsevier Ltd. All rights reserved. Keywords: AIDS; Race; Discourse; Social structure and health; USA [T]he American image of the Negro lives also in the Negro’s heart; and when he has surrendered to this image life has no other possible reality. James Baldwin (1951, p. 38) Critiquing science It is simple common sense in the United States that HIV is the virus that causes AIDS, and to suggest Tel.: +1 434 924 4095; fax: +1 434 924 1305. E-mail address: [email protected] (W.E. Marshall). otherwise is to incur the wrath and ridicule of institutional medical and scientific orthodoxy. The disease—or more properly the syndrome—is unproblematically understood as a complex of symptoms indicating an immune system that has ceased to function. It is precisely the taken-for-granted nature of AIDS, and the generally unquestioned hegemony of scientific knowledge production, that occludes the possibility of other interpretations of life and death, health and disease. To argue that HIV/AIDS is more complicated than biomedicine allows, or that the discourse on HIV/AIDS elides significant politicaleconomic and socio-cultural realities, as I do here, is not to deny the tragedy of what is called AIDS. What I 0277-9536/$ - see front matter r 2004 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2004.11.009 ARTICLE IN PRESS 2516 W.E. Marshall / Social Science & Medicine 60 (2005) 2515–2525 am contesting is not the tragedy, but how the tragedy is interpreted and how the discourse on HIV/AIDS valorizes Western scientific logic at the expense of other ways of interpreting the world. If the AIDS epidemic is primarily a biological phenomenon, then the solution may be found in vaccine, and prophylaxis, and prevention efforts aimed at changing the behavior of individual bodies. But if what we call AIDS is a sociocultural and political-economic phenomenon with biological manifestations, then it is essential that the insights of the social sciences and humanities be brought to bear on finding solutions to the epidemic. Ultimately, this would entail challenging current global power relations. Science privileges the explanatory power of biology over the social, cultural and political-economic (Bibeau & Pedersen, 2002, p. 161). The ubiquity of biomedical logic, its privileged authority as ‘‘truth’’ teller, underscores the biological root of the AIDS epidemic, and makes it appear uncontestable. But critics of science, such as Ludwig Fleck (1979), a Polish Jewish medical researcher who survived the Nazi era, viewed science as a social product inseparable from culture and history, and argued that ‘‘what actually thinks y is not the individual’’ but rather the social/cultural and historical community of which the individual is a part (Fleck, 1979, p. 37; see also Nader, 1996, pp. 264–265). Fleck influenced Thomas Kuhn (1996), who argued that scientific paradigms take hold because they are successful at solving a closely bounded set of problems that engage scientists as acute (1996, p. 23). Both metaphysical and methodological, paradigms are the means of mapping reality. Paradigms set the boundaries for determining the dimensions of a problem that is clearly soluble within the limits of scientific method; other problems, those beyond the scope of science are delegitimized or ignored. Thus, as Kuhn put it: ‘‘A paradigm can y insulate the [scientific] community from those socially important problems that y cannot be stated in terms of the conceptual and instrumental tools the paradigm supplies’’ (1996, p. 37). In the Kuhnian sense, there is a paradigm for HIV/AIDS research that reinforces the borders of official knowing. These borders constrict legitimate inquiry to the singular individual body and its ‘‘integrated y system of organs, tissues, cells, and cell products such as antibodies that differentiate [it] self from non-self and neutralize potentially pathogenic organisms or substances.’’1 Foucault (1994) posited that with the rise of clinical medicine and pathological anatomy in Europe in the early 19th century, the human body became ‘‘the space of origin and distribution of disease’’ (1994, p. 2). In 1 Excerpted from American Heritage Talking Dictionary. Copyright r 1997 The Learning Company, Inc. All Rights Reserved. Birth of the Clinic, Foucault (1994) describes the transformations in the means of knowing disease: the primacy of the clinical gaze as diagnoses supplanted earlier nosological forms, and would eventually be replaced by other notions of disease space and etiology. It is the discipline involved in knowing disease that is important here, and the locus of the individual body, as the space of the origins of disease. If we are to understand the complex relationships that form the cluster of phenomena we call the AIDS epidemic, the disciplinary lines imagined between scientific paradigms and the clinical focus on the individual body on one hand, and the social sciences and humanities disciplines, on the other, must be breached. The color line If there is anything that links the people of the African diaspora in the 21st century, it is perhaps a set of Western discourses about the morbidity and mortality of black bodies, which reinscribe the opposition between modernity and savagery and health and disease. In the United States this discourse revolves around the susceptibility of African Americans to a host of chronic and infectious diseases, as well as accidents, suicide and homicide, which are perceived as the cause of shortened life spans and a hyper-morbidity which taxes the medical system by increasing the burden of providing care to the poor. In sub-Saharan Africa, a US originating discourse focuses primarily on the effects of epidemic disease. The discourses of bio- and socio-pathology that link African diasporic communities around the globe, often seamlessly articulate with structural locations, producing a coherent narrative in which social and moral positions justify and substantiate one another. My analysis here occurs on both these levels. On the one hand, I am exploring a US-based discourse on HIV and AIDS as a cultural representation and discursive frame, in which the binary normal/pathological is the central explanatory logic for difference. On the other hand, I take the position that normal and pathological are structural locations, positions in a political and moral economy. My analysis depends upon tacking back and forth between these analytic frames and sometimes conflating them. This tacking acknowledges that the separation between the social structural and the discursive is mostly heuristic, since in the world they clearly implicate and reinforce each other. While there is a literature exploring the discursive construction of HIV and AIDS as deviant, dirty and degenerate (see Gilman, 1988, Lawless, Kippax, & Crawford, 1996; Patton, 1985; Sontag, 1989; Treichler, 1988; Watney, 1987), less has been written that explores the way in which scientific literature depends upon the logic of race (see Bibeau & Pedersen, 2002) and the way ARTICLE IN PRESS W.E. Marshall / Social Science & Medicine 60 (2005) 2515–2525 that ‘‘raced bodies’’ (that is, bodies defined primarily in terms of genetic and phenotypical notions of race) are depicted in that literature. As a set of social relationships that sometimes masquerades as scientific fact, race exceeds the limits of a purely biomedical way of knowing. Race as scientific fact is often expressed in a discourse that implicitly and explicitly equates disease, dysfunction and pathology with racialized bodies. As Bibeau and Pedersen (2002) argued, science during the Enlightenment was based upon a hierarchical conception of race with European whiteness defining the top of the ladder (2002, p. 144). This, I argue, is for the most part still the case. In 21st century scientific discourse, the white body continues to stand as the unmarked, healthy norm in ideological, political and physical senses. Indeed, exploring the role of race in biomedical conceptions of the body and conceptions of health and disease requires the insights of humanities and social science disciplines. In The Souls of Black Folks, Du Bois (1999) asserted that the problem of the 20th century was the problem of the color line. ‘‘Between me and the other world,’’ he wrote, ‘‘there is an ever unasked question: y How does it feel to be a problem?’’ (1999, pp. 9–10). For Du Bois, the problem lay in how ‘‘the other world’’—the white world—read and wrote black bodies. An eloquent early twentieth century lament, The Souls of Black Folk explores the dilemmas of those who ‘‘embody race.’’ But what does it mean to embody race? And what is the discursive and structural relationship between race and disease? There is a passage in Souls that I would like to linger over because it suggests a way of analyzing the relationship between the AIDS epidemic and black bodies. In his discussion of the effect of ‘‘social problems’’ on black bodies and souls, Du Bois wrote: A people thus handicapped ought not to be asked to race with the world, but rather allowed to give all its time and thought to its own social problems. But alas! While sociologists gleefully count his bastards and his prostitutes, the very soul of the toiling, sweating black man is darkened by the shadow of vast despair y But the facing of so vast a prejudice could not but bring inevitable self-questioning, selfdisparagement, and lowering of ideal which ever accompany repression and breed in an atmosphere of contempt and hate. Whisperings and portents come borne upon the four winds: Lo! We are diseased and dying, cried the dark hosts; we cannot write, our voting is in vain; what need of educations since we must always cook and serve? And the Nation echoed and enforced this criticism, saying: Be content to be servants, and nothing more; what need of higher culture for half-men? Away with the black man’s 2517 ballot, by force or fraud,—and behold the suicide of a race! (1999, pp. 14–15, my italics). For Du Bois, part of what it meant to embody race in early 20th-century America was to be inscribed in a particular set of discourses, which rendered black bodies other, peculiar, pathological, disgraced. Du Bois (1999) connects the sociological discourse on Negro bastards and prostitutes the vast despair of the race. The Negro, he argued, in the face of ‘‘systematic humiliation,’’ becomes sick with despair (1999, p. 15). Du Bois thus links academic discourses of social disorder and with disease and suffering. It is as if, Du Bois suggested, the results of white supremacy are manifest not simply in the political, economic and socio-cultural realms, but in the bodies and souls of black folk. Du Bois thus foregrounds the problem of the oppressed internalizing the categories of the dominant. But Du Bois’ focus is not only on the ramifications of discourse on the bodies and souls of black folks. In The Health and Physique of the Negro American, published in 1906, Du Bois challenged the assumption that ‘‘the Negro race is inferior to other races in physical build or vitality.’’ While blacks in the early 20th century (and in the early 21st experienced much higher rates of morbidity and mortality from certain diseases than whites, Du Bois disputed the notion that this was the result of any inherent physical inferiority. The difference in morbidity and mortality, he argued could be explained on grounds other than race. Regardless of race, he posited, ‘‘[i]f the population were divided as to social and economic condition the matter of race would be almost entirely eliminated.’’ In contrast to his explorations in Souls, Du Bois (2003) foregrounds social structural and political economic forces as the source of racial health disparities. The black bodies that concerned Du Bois were effected doubly, the poverty of early 20th century blacks affected their health, but no less so than their discursive position in academic literature. Less explored is the relationship between white discourse on black pathology as a means of shifting attention away from the power dynamics that create and sustain black powerlessness. In her book of literary criticism, Playing in the Dark: Whiteness and the Literary Imagination, Toni Morrison (1992) explores the Africanist presence in the imagination of canonical white American authors, such as Hemingway, Hawthorne and James. You do not have to read African American literature, Morrison posits, to probe the meaning of race. In white literature there is a ‘‘thunderous, theatrical presence of black surrogacy,’’ that plays the role of ‘‘an informing, stabilizing, and disturbing element’’ (1992, p. 13). Her project in Playing in the Dark is to explore the creation of ‘‘Africanism’’ as a staging ground y for the elaboration of the ARTICLE IN PRESS 2518 W.E. Marshall / Social Science & Medicine 60 (2005) 2515–2525 quintessential American identity’’ (1992, pp. 17, 44), to allow the seemingly marginal presence of black characters and black nations in white American fiction to illuminate whiteness as an American cultural construct. Race, in her analysis, works as metaphor, mode of commentary and camouflage for forces of social division and decay. In what public discourse, Morrison asks, does the black referent not exist? ‘‘The presence of black people,’’ she answers, is ‘‘inherent’’ and ‘‘inextricable’’ (1992, p. 65) in American discourses past and present. Morrison thus focuses on the effects of blackness in the white imaginary and on the role of blackness in the construction of whiteness itself. Morrison explains her critical perspective on writing and race: As a writer reading, I came to realize the obvious: the subject of the dream is the dreamer. The fabrication of an Africanist persona is reflexive; an extraordinary mediation on the self; a powerful exploration of the fears and desires that reside in the writerly conscious. It is an astonishing revelation of longing, of terror, of perplexity, of shame y (Morrison, 1992, p. 17). If Du Bois reminds us that being the object of discourse is a place of powerlessness that can lead to disease and despair, Morrison points to the need for a reflexive hermeneutic of whiteness that shifts the focus to the production of white knowledge about others. In the United States, scientific and biomedical discourses on AIDS are often tangled with older narratives about the sociocultural (read ‘‘racial’’) pathology of black women’s reproduction and the welfare state (see Lubiano, 1992; Roberts, 1999). In African nations, the discourse on HIV and AIDS maps onto narratives about the degraded and dysfunctional nature/culture of African people and politics.2 In the US and in African nations, as well as elsewhere in the diaspora, a ‘‘blame the victim’’ ideology is a persistent subtext of health development discourse. When applied to the narratives of Western science and medicine, Morrison’s argument illuminates how literature—even scientific literature—is based upon a normal/pathological and white/black binary. How do we interpret a scientific literature that represents whole communities, whole nations, and whole regions of the world by what they lack? How does such literature endorse racist notions of survival of the fittest? 2 Comaroff (1993), writing about medicine and colonialism, argued that expanding European empires in Africa helped the new biological sciences by providing the ‘‘raw materialy [A]s an object of European speculation, ‘Africans’ personified suffering and degeneracy, their environment a hothouse of fever and affliction’’ (1993, p. 305). Social structure and the health of the African Diaspora Although mainstream science officially denies that race is either biological or genetic,3 in regard to health and disease, some science continues to legitimate epistemologies and ontologies that efface what epidemiologists Krieger and Bassett (1993) call ‘‘the dialectical interpenetration of racism, class relations and health’’ (1993, pp. 186–169). The sub-discipline of population genetics, for example, holds that race is an important basis of difference in disease and response to drugs (Wade, 2002; see Risch, Burchard, Ziv, & Tang, 2002). In the social sciences and humanities, the recognition that race has no biological reality leads to critical analyses of race as a social and cultural construction. But understanding race as a social truth makes it no less ‘‘real.’’ One of the important insights from emerging public health and medical anthropology literatures challenges the genetic basis of ‘‘minority health disparities’’ by analyzing the relationship between race, class, culture and health. What becomes evident is the extent to which the biological discourse works to efface the social production of health and shroud the relationship between capitalism, poverty, race and disease. Although in the 19th century public health scholars explored the roots of disease in inequalities in the social world (see Engels, 1981), after the mid-20th century, with the rise of a Euro/American scientific, medical and pharmaceutical industry, public health began to focus almost entirely on individual behaviors and risk (Link & Phelan, 1995). More recently, an epidemiological literature attempting to reinstate the connection between social structure and health has emerged. This literature emphasizes the limitations of ‘‘biological individualism’’—the rigid dichotomy between individual bodies and the social world, and the implicit acceptance of social inequalities in health (Fee & Krieger, 1993). Geronimus (2000), who writes about the structural influences on health in the US, has argued that without changing the policies that permit the progression of urban decay, public health professionals will be unable to develop programs supporting health for inner city residents. Geronimus argued that the cumulative impact of persistent disadvantage could have an immensely negative impact on health. In the case of poor African Americans, she argued, this cumulative impact results in excess morbidity and mortality in the young and middle adult years. Similarly, in sociology and anthropology, a literature critical of medicalization has emerged. In a meaningful example of interdisciplinary research, Roderick Wallace (1991a), a physicist, posits a causal relationship between 3 For an example of a mainstream position see Schwartz, 2001, p. 1393. ‘‘Instruction in medical genetics should emphasize the fallacy of race as a scientific concepty’’ ARTICLE IN PRESS W.E. Marshall / Social Science & Medicine 60 (2005) 2515–2525 widespread socioeconomic collapse (such as occurred in the South Bronx in the 1970s) and the spread of HIV. He argues that the overmedicalization of HIV/AIDS ‘‘may well be an increasingly serious impediment to its control’’ (Wallace, 1991a, p. 1160) and argues that solutions to the epidemic lie in social policies that challenge urban disinvestments: Paradigm constraints on AIDS research—overmedicalization, hypermathematical compulsions and excursions, explicit and implicit ideological restrictions on both scientific vision and funding—have all combined to create a separate ‘‘AIDS literature’’ which is scientifically weak, highly self-referent and significantly isolated from other branches of science, particularly geography, anthropology, sociology, political science and economics (Wallace, 1993, p. 895; see also Wallace, 1991b, 1990; Wallace & Wallace, 1995; Wallace, Huang, Gould, & Wallace, 1997). The notion that disease can be evaded by the proper behavior of individual bodies echoes colonial discourses that link sin and disease and race and disease. With the emphasis on ‘‘risky’’ practices and cultural characteristics, the discourse on HIV/AIDS in the African diaspora is able to elide any recognition of the historical, political and economic contexts that put people ‘‘at risk of risks’’ (Link & Phelan, 1995), and fails to relate individuals to socio-cultural contexts characterized by specific relations of power. By effacing history, politics and economics, and by focusing exclusively on disease at the level of the cell and the individual body, this discourse obscures a primary social fact: what links black bodies is not risky behavior, but a similarly perilous position in the global moral and political economy. ‘‘AIDS’’ in ‘‘Africa’’ u created u aids virus den turn it on us u created crack to turn us back a famine plan in afrika lan but you can’t kill de spirit of black solidarity Mutubaruka, ‘‘Blakk Wi Blakk,’’ Blakk Wi Blak ykyk, Sanachie Records, 1991. HIV has had a searing impact on Africans—particularly sub-Saharan Africans. Although the nations of Africa at the beginning of the 21st century represented 4.8% of the world’s population, the continent contained 50% of the world’s HIV positive people, and accounted 2519 for 60% of the 16.3 million lives lost since recognition of the epidemic began in the late 1970s. In just 1 year— 2003—2.3 million people died of AIDS on the continent. The epidemic significantly challenges hopes for wellbeing: as a result of HIV, life expectancy has decreased, a generation of orphaned children has been born, and costs associated with death from AIDS have strained household budgets throughout the region. And, subSaharan Africa has the highest sero-prevalence rates in the world—a predictor of future HIV incidence. Alongside these apparently neutral facts, the scientific discourse on AIDS in Africa, especially when spun for popular consumption, is implicitly (and sometimes explicitly) teleological. AIDS is often portrayed as a natural phenomenon roaring out of control, a harbinger of apocalypse, and a sign of pre-modern backwardness. According to a World Health Organization (WHO) press release, ‘‘healthy life expectancy in Africa is dropping back to levels we have not seen in advanced countries since medieval times’’ (World Health Organization (WHO), 2000). In a Scientific American article called ‘‘Care for a Dying Continent,’’ the impact of AIDS in Africa is equated with a long transcended European past, and the devastating progression of AIDS is viewed as African destiny (Ezzell, 2000). In a recent New York Times Magazine article, the continent is described as ‘‘trapped somewhere closer to the ancient than to the modern,’’ and this is partially attributed to the ‘‘primitive understanding [the] people have of all that happens in their worldy an understanding that mayy allow for little in the way of modern development’’ (Bergner, 2003). The discourse on AIDS continues the long tradition of western scientific titillation with the (imagined) sexuality of black bodies.4 Sander Gilman (1985, p. 76) argued that ‘‘the association of the black with concupiscence’’ dates to pre-modern Europe. Gilman argues, ‘‘[t]he black is the embodiment of sexuality, her genitalia are a sign of decay and destruction, a marker against which the Western world can judge its own degeneracy and decline’’ (1985, p. 124). Consider a paragraph from the Scientific American article in which benighted perversions and implied bestiality are blamed for the epidemic: Sexual and hygienic practices y contribute to the high rate of infection. It is not uncommon for women to use their fingers, cloth, paper or cotton wool to swab the vaginal walls immediately before and during intercourse to achieve so-called dry sex y Some women also insert detergents and substances obtained from traditional healers—such as herbs and, rarely, soil on which a baboon has urinated—to 4 See Abrahms (1998), Gilman (1998), Byrd and Clayton (2000). ARTICLE IN PRESS 2520 W.E. Marshall / Social Science & Medicine 60 (2005) 2515–2525 induce an inflammatory reaction that dries, warms and tightens the vagina (Ezzell, 2000). The emphasis on HIV as a sexually transmitted disease in sub-Saharan Africa has meant that prevention efforts focus on calls for abstinence, sexual behavior change and the distribution of condoms. The notion that poverty has biological effects, which play a crucial role in the spread of disease is often ignored in prevention efforts. Furthermore, recent evidence suggests that the iatrogenic transmission of HIV from unsafe injections in hospitals and clinics in sub-Saharan Africa is much wider spread than has been assumed (Gisselquist, 2002). In the Scientific American article cited above, Western researchers are depicted as warriors in the struggle against backwards social customs and a rapidly mutating virus. Notwithstanding the epidemiological insights about the relationship between social structure and health, the narrow focus of the discourse pushes any discussion of the relationship between HIV and poverty into the margins. The prophylaxes of modern medicine are described in the Scientific American article under the sub-heading ‘‘Offering Hope’’. But all the clinic’s staff are in high spirits today. Project coordinators y have just found out that the preparation of nonoxynol-9 gel that they hope to offer as a backup method for protection from HIV to women who cannot consistently used condoms has been approved. And today is the first day of a dry run to work out any kinks in the procedures for a huge upcoming study of whether using hormone-based contraceptives such as the birth-control pill and Depo-Provera injections ymake a woman more susceptible to the AIDS virus (Ezzell, 2000). Fanon (1967, p. 32) wrote that the European racism that found its basis in biology, gave way to a more encompassing and subtle form, one that ‘‘aspire[d] to be rational, individual, genotypically and phenotypically determinedy’’ The object of this racism, Fanon argued, was not the individual, but rather, a ‘‘certain form of existing’’. In the discourse on AIDS in Africa, the focus is on individual and cultural behaviors of Africans, and never on the cultural beliefs and practices of Euro/ American scientists and researchers. The emphasis in the Scientific American article on the microbicidal nonoxynol-9 as a potential barrier to HIV, however, reflects the desire of science to a find single means of eradicating AIDS. For science ‘‘the best hope for staunching the pandemic lies with a vaccine’’ (Vastag, 2001). Indeed, science harbors a peculiar belief that a single cure will eradicate HIV/AIDS, but this desire for a magic bullet belies the reality of the inefficacy of vaccines in most of the world. Smallpox is the only preventable contagion to have been eradicated through vaccine. Measles, diphtheria, and paralytic poliomyelitis, among others, all understood by science to be vaccine preventable epidemic diseases, remain endemic in the poor countries of Africa, Asia and Latin America where they ‘‘plague, cripple and kill’’ millions of people. In the West, these diseases have either been controlled or eradicated (Chase, 1982, p. 469). The imprudent emphasis by Western researchers on a pharmaceutical solution to HIV is demonstrated in the rise and fall of Nonoxynol-9 (N-9) as a candidate for magic bullet. In 1985, N-9 was first demonstrated to be effective against HIV. However, in 1988, a study conducted on sex workers in Nairobi, Kenya,5 suggested that N-9 might actually increase the risk of HIV by causing vaginal lesions and recurrent yeast infections. Because the data derived from a study of African sex workers the findings were dismissed as irrelevant to the sexual experiences of the majority of women (Wittkowski, 1995; Zachary, 1994). But the findings of a subsequent study confirmed the earlier results. In 2002, Western health agencies determined that the benefits of N-9 as a microbicide did not outweigh side effects (i.e. vaginal and cervical lesions) that increased the risk of HIV infection and should no longer be marketed (Population and Public Health Branch (Canada), 2004). My point here is that this peculiar scientific emphasis on pharmaceuticals as the single means of disease eradication places scientists in the implausible position of supporting one magic cure after another, which have never (at least not yet) materialized. All of the tropes deployed in Western writing for blackness—images of dark, danger, and deep primordial nature—are evident in both the scholarly and popular articles about the effect of AIDS on the African continent. Consider that an in-depth New York Times series on AIDS is called ‘‘The Dead Zones,’’ and the articles in the series are mainly about the unfolding epidemic in the nations of Africa. Hidden within and legitimized by the language of science, these narratives invoke the notion of survival of the fittest, implicitly calling into question the humanity of African people. Consider, also the sense of fatalism that characterizes much popular writing on Africa, like the passages from a New York Times article called ‘‘Our Africa.’’ It’s not hard to find the winner in the Sudanese war, or in any war in Africa; it is the microbes that always emerge victorious. Infectious disease flowers in conditions of anarchy. Measles, cholera, malaria, 5 The figure of the ‘‘Nairobi prostitute’’ is a recurring trope in Western discourse on AIDS in Africa, an iteration that tends to support Gilman’s psychological reading of the role of black sexuality in modernist European literature (see Altman, 2000; Fowke et al., 1996, 2000). ARTICLE IN PRESS W.E. Marshall / Social Science & Medicine 60 (2005) 2515–2525 AIDS, sleeping sickness, leprosy—Sudan is a country trapped in the fangs of diseasey And disease is also an excellent incubator of chaos. It is an endless cycle of misery: war and corruption mean no health care and no family planning; no health care and no family planning mean too many sick people; too many sick people create desperation and poverty, which lead back to corruption and war. ytropical Africa—hot, wet and poor, and home to an unmatched diversity of animals, plants and microbes—has been an especially fertile petri dish for pathogensyHIV, of course, is widely believed to have emerged from Africa; Ebola, tooy (Goldberg, 1997). The passages establish an air of certainty in which disease is the root of an endless ‘‘cycle of misery,’’ and perpetually ‘‘sick’’ people are completely trapped. ‘‘Africa’’ is portrayed as uncivilized, untamed and teeming with bacteria. While a vast area containing a diverse array of cultures, religions, and ethnicities is conflated into a monolith, microbes and pathogens are portrayed as the main protagonists. Because they are popular amplifications of scientific discourse on disease, the rhetorical use of nature and science invokes notions of survival of the fittest, and rationalizes social conditions that stem from global inequalities under the rubric of science. These passages illustrate the need for analyses of disease that attend to both structure and discourse, and that identify how discourses of disease overshadow the relevance of structural analysis and constantly invoke images of ‘‘Africa’’ that suspend it in a static realm of primitivity. Rakai: in the shadow of Tuskegee A heterodox theory on the origins of HIV and AIDS was published in a book called The River: A Journey to the Source of HIV and AIDS written by Edward Hooper (1999). Hooper theorized that HIV had iatrogenic origins, thus locating the source of HIV in the social/ cultural realm—rather than in the natural realm. And unlike orthodox theories that unfold against ‘‘Africa’’ as primordial wilderness, Hooper’s iatrogenic theory of origins unfolds against colonial Africa as the site of clinical trials for the polio vaccine in the 1950s. Hooper posits that a contaminated batch of the polio vaccine was administered to one million colonial subjects in the then Belgium controlled nations of Congo, Rwanda and Burundi. But what I want to highlight about Hooper’s research is not his theory on the origins of AIDS (although I find that quite credible). Rather, Hooper’s book illuminates the relationship between Western scientific research and colonial Africa. In the mid-20th century, colonial Africa functioned as a ‘‘natural’’ 2521 laboratory for Euro/American researchers. And, as Hooper so carefully documents, questions of ethics and of scientific oversight simply did not apply in such a setting. Which brings us to Rakai, a research project which helps to illuminate the discursive and practical relationship between race and biomedicine, and its reverberations throughout the African diaspora from Rakai, Uganda, to Macon County, Alabama. From November 1994 to October 1998, a group of American researchers headed by Thomas Quinn of Johns Hopkins, conducted a study in Rakai, a rural district in Uganda. The research, conducted as a ‘‘community-based randomized trial’’ (Quinn, Wawer, Sewankambo, Serwadda, Li, Wabwire–Mangen et al., 2000, p. 921), was designed principally to examine the ‘‘natural history’’ of HIV. In particular, the study explored two issues in HIV transmission: first, it sought to determine whether sexually transmitted diseases such as syphilis and gonorrhea increased the risk of HIV infection, and second, it explored the influence of viral load in relation to other risk factors in the heterosexual transmission of HIV (Angell, 2000, p. 967). The study involved over 15,000 people, among whom 415 female–male couples were serodiscordant, meaning that one was HIV positive and the other was not. The serodiscordant couples were identified and followed for 30 months. During the course of the study, 90 people seroconverted, or became HIV positive (Quinn et al., 2000). In addition, those who were found to have other sexually transmitted diseases, such as gonorrhea or chlamydia, endemic to that region of Africa, were not treated by the US researchers with the appropriate antibiotics, but were referred to a government-run health clinic. The study was completely uncontroversial both in Uganda and in the US. As with all federally funded research it was approved by institutional human subjects review panels at Columbia and Johns Hopkins, by the AIDS Research Sub-Committee of the Ugandan National Council for Science and Technology, and by the Office for the Protection from Research Risk of the National Institutes of Health (Angell, 2000). The study did not become controversial until the researchers submitted their findings to the New England Journal of Medicine. The article was approved by both outside peer reviewers as well as in-house editors, but the journal’s chief editor, Marcia Angell, felt that it warranted further review from two medical ethicists ‘‘familiar with research on HIV in developing countries’’ (Angell, 2000). The two ethicists presented divergent views: one said the research was not ethical, the other said that it was. Angell decided to publish the findings along with an editorial raising the ethical questions and arguing that standards of ethics should not depend upon where the research is conducted. One of the most important ARTICLE IN PRESS 2522 W.E. Marshall / Social Science & Medicine 60 (2005) 2515–2525 points that Angell made in her editorial is that the benefits of the study will not accrue in Uganda. Quinn et al. found that the risk of heterosexual transmission correlated with viral load, but how will that information be used in Uganda? The very condition that justified doing the study in the first place—the lack of availability of antiretroviral treatment—will greatly limit the relevance of the results there. As is so often the case, the results will probably find their greatest application in the developed world (Angell, 2000, pp. 967–968). Antiretroviral treatments, which are widely available in the US, are too costly for widespread use in Uganda. Antiretroviral drugs have the effect of reducing viral load. Hence, the research could not be done in the US. In order to study the effect of viral load on heterosexual HIV transmission, the research had to be done in a place without the possibility of antiretroviral drugs. Quinn defended the study, arguing that it was the government of Uganda that ‘‘insisted that researchers not inform study subjects that their partners had HIV.’’ Quinn also defended the ethics of the study, arguing that ‘‘it provided the best medical care possible in remote regions of rural Africa’’ (Groopman, 2000). In the past Ugandan officials have defended similar studies. Dr. Peter Mugyenyi, the director of Uganda’s Joint Clinical Research Center, argued in 1998 that in the case of Ugandan participation in clinical HIV vaccine trials, debates about western ethics were misplaced. ‘‘Things seem so simple in a rich country,’’ he told The New York Times. ‘‘They sometimes talk about this in America like it is the Tuskegee experiment and we are simple, ignorant dupesy.Its terribly insulting to us and to the Western agencies and individuals who have worked with us’’ (Specter, 1998). However, the Rakai study was not about the development of an HIV vaccine, rather it was clearly aimed at producing information that would assist in the prevention of HIV transmission among heterosexuals who have access to antiretrovirals, which is to say people in the US and Europe. Mugyenyi’s argument in support of vaccine trials is based upon the assumption that once developed, a vaccine would benefit Ugandans—at least 20% of whom are believed to be infected with HIV. ‘‘Why should Americans undertake risky research on themselves for a problem they really don’t have?’’ Mugyenyi asked. ‘‘That would make them the guinea pigs. The risk belongs here where the people are dying’’ (Specter, 1998). But even though Ugandans engaged in ‘‘risky research’’ as guinea pigs may become infected with HIV, and then surely die, there is no guarantee that the vaccine developed over their dead bodies would be widely available in Uganda at all. The moral and political economy of bodies and healing The Rakai study, as well as other research on HIV in Africa, points to a global moral and political economy of bodies and healing, in which ‘‘African’’ bodies in ‘‘remote’’ places serve as guinea pigs for healing methodologies that will only be useful among the rich. And in this moral and political economy, African nations pragmatically evade the question of ethics in order to attract the bio-medical research industry as the most immediate available influx of western dollars and technology transfer. It is fascinating how the Tuskegee Study on Untreated Syphilis in the Negro Male is invoked as a standard of unethical research. In several New York Times articles covering the Rakai study and in the statements made by Dr. Mugyenyi, Tuskegee serves as the negative point of reference. Compared with Tuskegee, the argument goes, the Rakai study appears less unethical. Tuskegee is judged to be much worse since treatment was available but deliberately withheld, as opposed to Rakai, where antiretrovirals are perceived as unavailable. The reference to Tuskegee, I think, needs to be highlighted in any discussion of the moral and political economy of bodies and healing. One of the similarities between the Tuskegee Study and the study conducted in Rakai is the scientific emphasis on the observation of the ‘‘natural history’’ of disease. Macon County, Alabama, the site of the Tuskegee study, was chosen in 1932 because, while there were large numbers of syphilis cases there, no funds were available for treatment. Indeed, at 398 per 1000, Macon County was found to have the highest prevalence of syphilis cases among six rural Southern counties surveyed. And in 1932, the Depression meant a dearth of government and philanthropic funds for indigent medical treatment (Gray, 1998). But diseases in humans have no natural histories. It is, rather, social and political factors that create the conditions that allow diseases to flourish in black bodies under the scientific gaze. The initial justification for the Tuskegee study is echoed in the justification for Rakai: these research subjects would not have received treatment anyway, and so science has an opportunity that may prove to be universally beneficial. When the Tuskegee study began in 1932, no one argued that treatment was available, although it was widely available—even in Alabama—if the patient could pay the price. In the 1930s, the annual cost per patient for the treatment of syphilis was upwards of $40.00. And even Alabama’s subsidized program to treat those of modest incomes was beyond the means of sharecroppers who were (by definition) short of cash (Jones, 1993). I am arguing that there is nothing ‘‘natural’’ about the planned observation of suffering bodies down to the level of the cell. In Macon, Alabama, no less than Rakai, Uganda, access to biomedical healing is determined by ARTICLE IN PRESS W.E. Marshall / Social Science & Medicine 60 (2005) 2515–2525 political and economic forces. How do we perceive the borders that delimit those who get antiretrovirals or antibiotics from those who do not? While Dr. Mugyenyi argued that the distinction is one of developing versus developed countries, the Tuskegee study, along with evidence that HIV prevalence among urban black men who have sex with men is approaching the prevalence rates in some sub-Saharan African nations,6 subverts that logic. My goal in this paper is to call attention to the construction of these discourses, to the varied work they do within scientific communities and within African diasporic communities, and to the moral and political economy of bodies and healing in which they are deployed. Once, on a public health Internet list I belonged to, an epidemiologist was critical of my position on AIDS in Africa. He said he shared my interests in cross-cultural medicine, and agreed that poverty exerted a huge factor on health. ‘‘Still’’, he said, ‘‘there’s the very immediate empirical question of ‘what works’y I think it’s true that the elite nature of the scientific enterprise is worthy of our attention. However, the same is true of the elitist nature of the academic postmodernist discoursey.If I had the infection, I would demand the best that western science has to offery’’ The question of what is the best that western science has to offer leads us to the roots of western scientific epistemology, of culturally bounded notions of ontology, and even of Judeo-Christian theology. Is it possible to distinguish between the best and the worst that scientific medicine has to offer? Can the western science be disassociated with the culture, history and politics of the West? Can biomedicine learn to make room for critical social analysis? In what sense does a discourse on AIDS in Africa that posits catastrophe and near extinction produce reality? Acknowledgements The initial research for this paper began while I was a postdoctoral fellow at the Center for Interdisciplinary Research on AIDS at Yale, supported by an NIMH 6 According to a report in The Washington Post: ‘‘A survey of 2942 gay men ages 23–29 conducted in six cities from 1998 to 2000 found that 4.4% were becoming infected with [HIV] each year. The pace of new infections, called the ‘incidence rate,’ varies greatly by race and ethnicity. It was 2.5% among whites, 3.5% among Hispanics and 14.7% among blacks. The survey showed that 32% of young black gays were already infectedy’’ ‘I’m very concerned about the pockets of epidemic that we are seeing,’ Surgeon General David Satcher said. ‘‘Thirty percent— that’s approaching the Botswana’s level of infection’’ (Brown, 2001). 2523 Training Grant. My colleagues at Yale, Kim Blankenship, Robert Heimer, Kaveh Kooshnood, Sarah Bray, and Joan Altman, provided me with insightful comments and critique. I am especially indebted to my students and colleagues at the University of Virginia. Richard Handler, Susan McKinnon, Hanan Sabea, Ayla Olson, Lisa Stewart, Joseph Hellweg, George Mentore, and Ethan Van Blue kindly read drafts of the paper. Thanks, as well, for the helpful comments from the two anonymous reviewers. References Abrahms, Y. (1998). Images of Sara Bartman: sexuality, race and gender in early nineteenth Century Britain. In R. R. Peirson, & N. Chaudhuri (Eds.), Nation, empire, colony: historicizing gender and race (pp. 220–236). Bloomington: Indiana University Press. Altman, L. K. (2000). A new AIDS mystery prostitutes who have remained immune. The New York Times, 2/3/2000. Angell, M. (2000). Investigators’ responsibilities for human subjects in developing countries. The New England Journal of Medicine, 342(13), 967–968. Baldwin, J. (1951). Many thousands gone. Notes of a native son. Boston: Beacon Press. Bergner, D. (2003). The most unconventional weapon. The New York Times Magazine, October 26. Bibeau, G., & Pedersen, D. (2002). A return to scientific racism in medical social sciences: the case of sexuality and the AIDS epidemic in Africa. In M. Nichter, & M. Lock (Eds.), New horizons in medical anthropology: essays in honor of Charles Leslie (pp. 141–171). New York: Routledge. Brown, D. (2001). HIV on rise in young gay men: black males’ infection rate especially high in possible ‘resurgent epidemic. The Washington Post, June 1, 2001. Byrd, W. M., & Clayton, L. A. (2000). An American health dilemma: a medical history of African Americans and the problem of race, beginnings to 1900. New York: Routledge. Chase, A. (1982). Magic shots: a human and scientific account of the long and continuing struggle to eradicate infectious diseases by vaccination. New York: William Morrow and Company, Inc. Comaroff, J. (1993). The diseased heart of Africa: medicine, colonialism and the black body. In S. Lindenbaum, & M. Lock (Eds.), Knowledge, power & practice: the anthropology of medicine and everyday life. Berkeley: University of California Press. Du Bois, W. E. B. (1999). The souls of black folk. In H. L. Gates, & T. H. Oliver (Eds.). New York: W.W. Norton & Company. Du Bois, W. E. B. (2003). The health and physique of the American Negro. American Journal of Public Health, 93(2), 272–276. Engels, F. (1981). The condition of the working class in England. In E. Hobsbaum (Ed.). New York: Granada. Ezzell, C. (2000). Care for a dying continent. Scientific American, 282(5), 96–105. Fanon, F. (1967). Racism and Culture. In Toward the African revolution. New York: Grove Press (Chapter 2). ARTICLE IN PRESS 2524 W.E. Marshall / Social Science & Medicine 60 (2005) 2515–2525 Fee, E., & Krieger, N. (1993). Understanding AIDS: historical interpretation and the limits of biomedical individualism. American Journal of Public Health, 83(10), 1477–1486. Fleck, L. (1979). Genesis and development of a scientific fact. In T. J. Tren, & R. K. Merton (Eds.). Chicago: The University of Chicago Press. Foucault, M. (1994). The birth of the clinic: an archeology of medical perception. A. Sheridan Smith. (Trans). New York: Vintage Books. Fowke, K. R., Nico, J. D., Nagelkerke, T., Kimani, J., Simonsen, S. N., Anzala, A. O., Bwayo, J. J., MacDonald, K. S., Ngugi, E. N., & Plummer, F. A. (1996). Resistance to HIV-1 among persistently seronegative prostitutes in Nairobi, Kenya. The Lancet, 348(9038), 1347–1351. Fowke, K. R., Kaul, R., Rosenthal, K. L., Oyugi, J., Kimani, J., Rutherford, W. J., Nico, J. D., Nagelkerke, T., Ball, B., Bwayo, J. B., Simonsen, J. N., Shearer, G. M., & Plummer, F. A. (2000). HIV-1-specific cellular immune responses among HIV-1-resistant sex workers. Immunology and Cell Biology, 78(6), 586–595. Geronimus, A. T. (2000). To mitigate, resist, or undo: addressing structural influences on the health of urban populations. American Journal of Public Health, 90(6), 867–872. Gilman, S. (1985). Difference and pathology: stereotypes of sexuality, race and madness. Ithaca: Cornell University Press. Gilman, S. (1988). Seeing the AIDS patient. In Disease and representation: images of illness from madness to AIDS (pp. 246–272). Ithaca: Cornell University Press. Gisselquist, D. P. (2002). Estimating HIV-1 transmission efficiency through unsafe medical injections. International Journal of STD & AIDS, 13, 152–159. Goldberg, J. (1997). Our Africa. New York Times Magazine, March 2. Gray, F. D. (1998). The Tuskegee Syphilis study. Montgomery: Black Belt Press. Groopman, J. (2000). Ideas & trends: In an AIDS study, the devil is in the details. The New York Times [on line edition], April 2, 2000. Hooper, E. (1999). The river: a journey to the source of HIV and AIDS. New York: Little, Brown and Company. Jones, J. H. (1993). Bad blood: the Tuskegee Syphilis experiment. New York: The Free Press. Krieger, N., & Bassett, M. (1993). The health of black folks: disease, class and ideology in science. In S. Harding (Ed.), The ‘‘Racial’’ economy of science: toward a democratic future (pp. 161–169). Bloomington: Indiana University Press. Kuhn, T.S. (1996). The structure of scientific revolutions. Foundations of the unity of science series, Vol. 11 (2). Chicago: The University of Chicago Press. Link, B. G., & Phelan, J. (1995). Social conditions as fundamental causes of disease. Journal of Health and Social Behavior (Special Issue No. 80–94). Lawless, S., Kippax, S., & Crawford, J. (1996). Dirty, diseased and undeserving: the positioning of HIV positive women. Social Science & Medicine, 43(9), 1371–1377. Lubiano, W. (1992). Black ladies, welfare queens, and state minstrels: ideological war by narrative means. In T. Morrison (Ed.), Race-ing justice, en-gendering power: essays on Anita Hill, Clarence Thomas, and the construction of social reality (pp. 30–44). New York: Pantheon Books. Morrison, T. (1992). Playing in the dark: whiteness and the literary imagination. Boston: Harvard University Press. Nader, L. (1996). Naked science: anthropological inquiry into boundaries, power and knowledge. New York: Routledge. Patton, C. (1985). Sex and germs: the politics of AIDS. Boston: South End Press. Population and Public Health Branch (Canada) (2004). Nonoxynol-9 and the risk of HIV transmission. Centre for Infectious Disease Prevention and Control. HIV/AIDS Epi Update, April 2004, hc-sc.gc.ca/pphg-dgspsp/publicat/epiuaepi/hiv-vih/nonoxynol_e.html. Quinn, T. C., Wawer, M. J., Sewankambo, N., Serwadda, D., Li, C., Wabwire-Mangen, F., Meehan, M. O., Lutalo, T., & Gray, R. H. (2000). Viral load and heterosexual transmission of human immunodeficiency virus type 1. The New England Journal of Medicine, 342(13), 921–929. Risch, N., Burchard, E., Ziv, E., Tang, H. (2002). Categorization of humans in biomedical research: genes, race and disease. Genome Biology, 3 (7), Comment 2007, July 1. Roberts, D. (1999). Killing the black body: race, reproduction and the meaning of liberty. New York: Vintage Books (Chapter 5). Schwartz, R. S. (2001). Racial profiling in medical research. New England Journal of Medicine, 344(18), 1392–1393. Sontag, S. (1989). AIDS and its metaphors. New York: Farrar, Straus and Giroux. Specter, M. (1998). Urgency tempers ethics concerns in Uganda trail of AIDS Vaccine. The New York Times [on-line archives], October 1, 1998. Treichler, P. A. (1988). AIDS, homophobia, and biomedical discourse: an epidemic of signification. In D. Crimp (Ed.), AIDS: cultural analysis, cultural activism (pp. 31–70). Cambridge: The MIT Press. Vastag, B. (2001). HIV vaccine efforts inch forward. Journal of the American Medical Association, 286(15), 1826–1828. Wade, N. (2002). Race is seen as real guide to track roots of disease. The New York Times, July 30, 2002. Wallace, R. (1990). Urban desertification, public health and public order: ‘Planned Shrinkage’, violent death, substance abuse and AIDS in the Bronx. Social Science & Medicine, 31(7), 801–813. Wallace, R. (1991a). Social disintegration and the spread of AIDS: thresholds for propagation along ‘Sociogeographic’ networks. Social Science & Medicine, 37(7), 1155–1162. Wallace, R. (1991b). Traveling waves of HIV infection on a low dimensional ‘Socio-Geographic’ network. Social Science & Medicine, 32(7), 847–852. Wallace, R. (1993). Social disintegration and the spread of AIDS—II: meltdown of sociogeographic structure in urban minority neighborhoods. Social Science & Medicine, 37(7), 8987–8996. Wallace, R., Huang, Y., Gould, P., & Wallace, D. (1997). The hierarchical diffusion of AIDS and violent crime among US metropolitan regions: inner city decay, stochastic resonance and reversal of the mortality transition. Social Science & Medicine, 44(7), 935–947. Wallace, R., & Wallace, D. (1995). US apartheid and the spread of AIDS to the suburbs: a multi-city analysis of the political ARTICLE IN PRESS W.E. Marshall / Social Science & Medicine 60 (2005) 2515–2525 economy of spatial epidemic threshold. Social Science & Medicine, 41(3), 333–345. Watney, S. (1987). Policing desire, pornography, AIDS and the media. London: Comedia. Wittkowski, K. M. (1995). The potential of nonoxinol 9 for the prevention of HIV infection reconsidered. AIDS, 9(3), 310–311. 2525 World Health Organization (2000). WHO issues new healthy life expectancy rankings. London: Press Release June 4, 2000. Zachary, B. (1994). Nonoxynol-9: better safe than sorry? A dispute over the regulation of lubricants reveals a potential hazard for AIDS. Out Magazine, February/March.