Telling the story of a clinical trial testing an innovative gel designed to prevent women from contracting HIV, Negotiating Pharmaceutical Uncertainty provides new insight into the complex and contradictory relationship between medical researchers and their subjects. Although clinical trials attempt to control and monitor participants' bodies, Saethre and Stadler argue that the inherent uncertainty of medical testing can create unanticipated opportunities for women to exercise control over their health, sexuality, and social relationships. Combining a critical analysis of the social production of biomedical knowledge and technologies with a detailed ethnography of the lives of female South African trial participants, this book brings to light issues of economic exclusion, racial disparity, and spiritual insecurity in Johannesburg's townships. Built on a series of tales ranging from strategy sessions at the National Institutes of Health to witchcraft accusations against the trial, Negotiating Pharmaceutical Uncertainty illuminates the everyday social lives of clinical trials.
As embedded anthropologists, Saethre and Stadler provide a unique and nuanced perspective of the reality of a clinical trial that is often hidden from view.
|Publisher:||Vanderbilt University Press|
|Product dimensions:||5.90(w) x 8.90(h) x 0.70(d)|
About the Author
Eirik Saethre is Associate Professor of Anthropology at the University of Hawaii at Manoa and author of Illness Is a Weapon: Indigenous Identity and Enduring Afflictions (also published by Vanderbilt University Press).
Jonathan Stadler is an Associate Professor in the Department of Anthropology and Development Studies at the University of Johannesburg, South Africa.
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Negotiating Pharmaceutical Uncertainty
Women's Agency in a South African HIV Prevention Trial
By Eirik Saethre, Jonathan Stadler
Vanderbilt University PressCopyright © 2017 Vanderbilt University Press
All rights reserved.
Infested Natives and Empowering Biotechnologies
An "epidemic of signification" (Treichler 1999), the HIV/AIDS crisis has simultaneously led to the innovation of new diagnostic techniques and biotechnologies while reiterating long-standing narratives of racial difference. Although the initial discovery of AIDS among gay men in the United States led the disease to be associated with homosexuality, by the mid-1980s narratives of "Black Africans" with AIDS began to grab headlines. Now acknowledged as the birthplace of HIV, and home to the highest prevalence rates in the world, sub-Saharan Africa has become a major focus of HIV/AIDS activism, research, and intervention. As cases of HIV in sub-Saharan Africa have continued to rise despite the existence of an effective prevention technology, the condom, the epidemiological profile of AIDS has become increasingly young and female. Almost 70 percent of all HIV-infected women can be found in Africa. These women have a higher chance of HIV infection than men and acquire HIV up to seven years earlier than men (Karim et al. 2012). Statistics such as these have led to the labeling of younger women as a "most at-risk population" (Chersich and Rees 2008). Transcending medical data, many explanations of the continent's high rate of HIV/AIDS focus on a unique "African" sexual culture, in which multiple sexual partners, gender inequalities, and unlubricated sex are common. While these narratives are based on epidemiological models, they nevertheless echo earlier portrayals of degenerate African natives. From European explorers to colonial public health officials, blackness, perverse sexuality, and disease have been inextricably linked.
Casting high rates of HIV as the result of cultural and sexual factors has had important consequences, affecting the development of technology to stem the pandemic. Drawing from the principles and innovations of the birth control movement, AIDS activists have argued for a female-controlled mechanism for prevention. While this is in part a response to epidemiological findings, it is also motivated by assumptions about ingrained gender power imbalances resulting from local cultural beliefs. Vulnerability to infection is attributed to powerlessness, which may include the inability to negotiate for "safer sex" and insist on condom use (Pettifor et al. 2004). In particular, HIV infection is linked to sexual violence (Dunkle et al. 2004a; Maman et al. 2000; Pronyk et al. 2006), which is experienced by 25 percent of South African women (Jewkes et al. 2002). Although condoms are highly reliable barriers against infection, they are impractical for women to use under such circumstances (Wilkinson 2002a). Christopher J. Elias and Lori Heise (1993:1; emphasis added), two microbicide advocates, declare, "Underlying gender power inequities severely limit the ability of many women to protect themselves from HIV infection, especially in the absence of a prevention technology they can use, when necessary, without their partner's consent." Consequently, new technologies have been sought that women can use without the knowledge or approval of men.
While initially championed only by reproductive health advocates, microbicides have come to be seen as the ideal female-controlled prevention method. Unlike condoms, which require male cooperation, microbicides "put the power to protect in women's hands" because they can be used clandestinely, or without the explicit acquiescence of a partner (GCM 2016). Thought to support autonomy in sexual decision-making and, therefore, in HIV prevention, microbicides are touted as products capable of realigning gendered inequalities and women's vulnerability to HIV infection (Bell 2000; Mantell, Dworkin, et al. 2006). Microbicides have thus been labeled the "gel of hope" in the press. But while microbicides are a new biotechnology, they also embody and address enduring beliefs that Africans are fundamentally at risk and in need. These assumptions create hierarchical relationships, relegating African women to the role of victims at the margins of what appears to be vital medical research.
MEDICAL REVOLUTIONS REEXAMINED
The protocols, tools, and assumptions of medical practice have been constructed through lengthy and complex processes. Often focusing on "great men" such as Andreas Vesalius, William Harvey, or Robert Koch, many histories of medicine depict the discipline as the ceaseless accumulation of physiological and biological knowledge, advancing along a single trajectory. However, this orderly portrayal overlooks many of the circuitous and contradictory paths that medicine has taken. Rather than viewing medicine as simply a string of innovations by great (white) men, we must look at the ways in which European concerns regarding morality, conquest, and race have guided it. Medicine embodies social norms and aspirations that continue to assert themselves in contemporary health crises. Two eras of "revolution" are particularly important for contextualizing responses to the HIV/AIDS epidemic: (1) the use of scientific explanations to make sense of racial difference and (2) the advent of germ theory and the subsequent rise of public health. While the imperial ambitions of European nations played a critical role in each of these eras, this influence is largely absent in many popular retellings.
Prior to the scientific revolution, health was thought to be maintained through a balance of substances or humors in the body. Popular throughout ancient Greece, Rome, and the Islamic world, humoral theories formed the bedrock of medical practice (Arikha 2007). Illness was attributed to a wide range of causes, including an imbalance of humors or a noxious "bad air" or miasma. Cholera epidemics were regularly attributed to miasmas, as was the Black Death. By the Middle Ages, these beliefs were firmly linked to Christianity, which had long associated sin with disease, and illness with God's judgment and will. Each of the Seven Deadly Sins corresponded to a medical condition, and illness was often viewed as a direct reflection of individual morality (Thomas 1997:16). In the sixteenth and seventeenth centuries, outbreaks of the bubonic plague were simultaneously attributed to evil humors and retribution for sin (Reiser 1985:7; Thomas 1997:18). Notions of miasma and sin would undergird European health beliefs for centuries, and their specters continue to linger in contemporary medical discourse. But these ideas did not exist in isolation. They were given meaning, in part, through their ability to make sense of what would come to be known as racial difference.
Beginning with the search for direct trade routes to Asia by the Portuguese at the end of the fifteenth century, western European nations increasingly came into contact with foreign places and peoples. With the "discovery" of the Americas and the Spice Islands, economic voyages spawned tales of exotic lands, while specimens of newfound flora and fauna sparked a growing interest in ontologies. By the close of the seventeenth century, when Enlightenment ideals had a firm hold on European thought, Europeans were favoring reason (in approaches such as a fledgling scientific method) over the assumptions of the past as they tried to understand the world they were traversing. Seeking to impose a regularity and logic onto the natural world, scholars sorted plants and animals into genera and species. In Systema Naturae (1735), Carl Linnaeus, like others of his time, extended the interest in speciation to humanity, which he divided into five taxa: Americanus, Asiaticus, Africanus, Europeanus, and Mostrosus. While Linnaeus claimed that this classification was scientifically based on phenotypic features, it was also grounded in popular European notions. Drawing from medical beliefs, it associated each race with a different humor: sanguine, choleric, phlegmatic, and melancholic. While Europeanus was described as active and adventurous, Africanus was cast as lazy and crafty (Graves 2001:39).
Instead of Enlightenment ideals universally dispelling the myths of the past, newfound scientific language perpetuated assumptions about human difference. Biology was one tool through which not only physical variation but also social difference was explained, and racial characteristics were repeatedly linked to intelligence, morality, and social behavior. While skin color was a dominant phenotype in these classifications, cranial and sexual characteristics were widely invoked as indicators of the savageness of particular populations. A high cranial capacity was equated with intelligence, leading to research documenting the acumen of Europeans in contrast to the stupidity of Africans. Drawing from claims that Africans possessed the lowest cranial volume of any race, Georges Cuvier argued that the "Negro" should be viewed as between Europeans and the "most ferocious apes" (quoted in Comaroff 1993:309). For some Europeans, these differences were so extreme that they equated race with species. Scientific racism promoted a hierarchy that justified European social, economic, and political domination of other peoples. Affirming the biological, intellectual, and moral preeminence of Europeans transformed colonialism, segregation, and slavery into excusable institutions.
Genitals and sexual responsiveness were also employed as further evidence of fundamental biological differences between races. The interest in sexual behavior was presented as scientific necessity rather than prurience. In North America, indigenous men allegedly lacked facial hair and possessed small penises, and their sexual drive was thought to be well below that of European men. Explorers and colonists also popularized reports of men wearing the clothes of women and marrying other men. Casting Native American men as feminine and impotent, these tales were cited as proof of the moral and social depravity of an entire race that, it was assumed, would be eventually subjugated by the more masculine and dominant European colonizers (Lyons and Lyons 2004:26). In contrast to Native Americans, Africans were the embodiment of excessive sexuality, and credited with having large penises as early as the fifteenth century. Measuring African genitalia became a scientific pursuit (Lyons and Lyons 2004:28). Like cranial capacity, penis size was regarded as proof that Africans were evolutionarily closer to the great apes than other humans. Female reproductive anatomy was also cited. Charles White (1799:58–61) stated that African women menstruated more than apes and baboons but less than European women, demonstrating a "regular gradation" among the species. The supposed similarity between apes and Africans led some to assert that sexual relationships between these groups were to be expected. Thomas Jefferson, for example, mentioned stories of apes having intercourse with negresses (Lyons and Lyons 2004:40). From the eighteenth century through the Victorian era, animal and African sexuality were linked, and Africans were associated with wild, exotic, irrational, and immoral sexual practices (Gausset 2001:510; Gilman 1985).
These sexual aberrations were seen as symptomatic of not only the social but also physical afflictions believed to be plaguing an entire continent and its people. In contrast to many temperate regions (such as North America) where introduced diseases had decimated local populations, the seeming ubiquity of deadly infectious diseases in tropical Africa (such as malaria and sleeping sickness) led the continent to be labeled White Man's Grave. Attributing these diseases to miasma, many Europeans viewed foreign environments and the people who inhabited them as pathological. The presence of disease was also blamed in part on African bodies, which were thought to radiate polluting and noxious organisms — natives were characterized as "infested," "greasy," and "indistinguishable from the pestilential surroundings" (Comaroff 1993:316). Merging notions of miasma and sinful illness with scientific racism allowed Europeans to portray Africa and her people as fundamentally diseased. While illness continued to be interpreted in part as punishment for immoral acts such as aberrant sexuality, it also became linked to environment and biology, which in turn was inextricably associated with racial identity.
Beliefs in miasma and scientific racism would gradually be dispelled as another wave of scientific "revolution" rolled through Europe at the end of the nineteenth century. Building on the development of laboratory science, the work of Louis Pasteur and Robert Koch ushered in germ theory. With the discovery of microorganisms, disease was reframed as the work of bacteria or other pathogens. The advent of germ theory reshaped not only how illness was viewed but also its treatment and prevention. Unlike an intangible ill wind, a discrete infectious agent could potentially be restricted or contained, thereby limiting future infections. This change paved the way for the development of public health, "the science and art of preventing disease, prolonging life and promoting physical health and efficiency through organized community efforts for the sanitation of the environment, the control of community infections, the education of the individual in principles of personal hygiene ..." (Winslow 1920:30). But despite the paradigm shift from miasma to germs and an endorsement of the science of disease prevention, popular notions of illness and morality continued to permeate medical discourse. In the United States, tuberculosis campaigns mirrored evangelical exhortations to repent and to embrace salvation (Tomes 1999). Educational pamphlets were referred to as "catechisms" and contained "commandments" that equated hygienic practices with God's natural law (Tomes 1997:279).
As public health approaches were exported to Europe's and America's foreign possessions, the creation and implementation of medical programs were profoundly impacted by the changing colonial context. By the nineteenth century, European governments had transformed the small settlements initially established as refueling stations and trading outposts into full-fledged colonies. To sustain colonial rule over vast areas of land inhabited by diverse peoples, a permanent and stable European presence was required. As governments relied on settlers to control their colonial possessions, the need to decrease white mortality rates prompted the first earnest scientific study of diseases associated with equatorial regions. Consequently, a new field of tropical medicine was developed and embraced in an ongoing partnership between medical professionals and colonial officials. The London School of Tropical Medicine was considered a "de facto medical department of the colonial office" (Worboys 1990:25). This association with European political and economic domination has led to the labeling of tropical medicine as a "fundamentally imperialistic" discipline (Farley 1991:3). As medical researchers identified the pathogens responsible for past epidemics, health officials introduced a range of sanitation and residential guidelines aimed at arresting the future spread of disease. These in turn provided colonial officials a new tool to govern through the medical control of bodies. Invoking germ theory and employing health protocols such as quarantine allowed governments not only to preserve the health of Europeans but also to segregate non-Europeans. Medical discourse was used not only to reinforce conceptual boundaries between whites and blacks, but also to create physical ones.
These new health discourses and interventions were aided by the burgeoning notion of culture. In an attempt to finally bring an end to scientific racism, Franz Boas (1904; 1911) argued that human variation should be understood not in terms of biology but rather culture. Unlike French ideas of civilisation, which cast humankind as a single whole striving to attain greater levels of progress and betterment, the German kultur stressed not the similarities but rather the variations between people (Kuper 1999). Acquired through socialization rather than genetics, culture provided a way of conceptualizing difference without invoking biology. But as narratives of racial difference shifted from biology to culture, several assumptions remained in place. Like explanations advocating the biological determination of race, popular notions of culture cast groups as subject to factors that are largely beyond individual control, such as social conditioning. In some ways, culture was a more effective tool for making sense of difference than race because it could draw on a Lamarckian paradigm — in which organisms could consciously adapt and then transmit these acquired characteristics to their offspring — which had been discredited in the natural sciences (Malik 1996:159). Accounting for human differences in a way that biological theories of the time could not, culture was transformed into "a functionally equivalent substitute for the older idea of 'race temperament'" (Stocking 1982:265). Although the original intent had been to refute scientific racism, "we have a 'new racism' in which 'culture,' 'tradition' and 'ethnicity' perform the work previously achieved by the category of 'race'" (Macleod and Durrheim 2002:788).
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Table of Contents
1 Infested Natives and Empowering Biotechnologies 19
2 Testing Hope 42
3 Recruiting Meaning 71
4 Libidinous Sociality 105
5 Experiencing Efficacy 129
6 The Biotechnical Salvation of a Failed Pharmaceutical 151