"Cancer as the general population knows it": knowledge, fear, and lay education in 1950s Britain

This article examines British medical debates about cancer education in the 1950s, debates that reveal how those responsible for cancer control thought about the public and their relationship to it, and what they thought the new political economy of medicine introduced by the National Health Service would mean for that relationship. Opponents of education campaigns argued that such programs would add to the economic and organizational pressures on the NHS, by setting in motion an ill-informed, uncontrollable demand that would overwhelm the service. But an influential educational "experiment" devised by the Manchester Committee on Cancer challenged these doubts, arguing that the public's fear was based in their experience with family and friends dying of the disease. The challenge for cancer control, then, was to improve that experience and thus change experiential knowledge.     

"War dysentery" and the limitations of German military hygiene during World War I

This article examines major epidemics of bacillary dysentery in the German army as well as among civilians in eastern Europe and in Germany during World War I. These epidemics were all the more surprising in light of prewar advances in understanding the disease and limiting dysentery outbreaks. Three major reasons are adduced for the incapacity of German military hygienists to prevent wartime epidemics. First was the difficulty of bacteriological testing at the front, especially early in the war, with negative consequences for diagnosis, therapy, and disease control. Second was inadequate hygiene including major shortcomings in latrine cleanliness and attempts to grapple with the "fly plague." Third was the lack of a Pasteur-type vaccine until late in the war. Susceptibility to dysentery was also heightened by war-related nutritional deficiencies. Taking off from an article by the English medical historian Roger Cooter, this article shows that the concept of "war dysentery" was socially constructed and served a variety of professional interests but at the same time takes issue with Cooter's arguments against linking "war" and "epidemics" pathogenetically.     

"Deaf discourse": the social construction of deafness in a Bedouin community

Among the Al-Sayyid Arab-Bedouin, the use of an indigenous sign language is widespread and provides the foundation of a signing community shared by hearing and deaf people. Cases with comparable high incidences of deafness have in recent years stimulated debates in diverse academic disciplines. Lacking an accurate term, they are regularly referred to as "Martha's Vineyard situations" and have often been oversimplified and romanticized. This article provides an in-depth analysis of a Bedouin shared-signing community and advocates closer investigation of both facilitating and disabling social practices, which would also allow better examination of comparable cases. This article concentrates on the shared use of sign language, the asymmetry it entails, and the manifold forms of translation and mediation that take place. Whereas most hearing Al-Sayyid persons have access to both spoken and signed modes of communication, deaf people's communication remains largely restricted to the signed mode (hence, the asymmetry). However, in contrast to the common reduction of deafness to the disabling absence of speech or need for translation, deaf people's need for translation is not unusual among the Al-Sayyid; local communication patterns involve many different forms of translation between different spoken languages, written languages, discourses, and social domains. Additionally, ample translators are readily available. Moreover, the common familiarity with deaf people and sign language facilitates the production and sharing of a unique experiential knowledge, grounded in daily experiences and practices. In this context, deafness is not easily subjugated to its medical model. However, encounters with the medical and educational establishment present a series of challenges that may severely exacerbate deaf people's structure of opportunities. Finally, I consider the attempts made so far to classify comparable cases; unfortunately, these mostly attempt to classify deaf communities rather than the broader category of signing communities. I thus maintain that the term "shared signing community" most accurately captures what these cases have in common: the pervasive use of signing by both hearing and deaf.     

Communicating biosecurity

Shifting from risk-calculation orientations focusing on populations to preparedness perspectives that model uncertainty through scenario-based projections, biosecurity debates redefined notions of "health" and "security." Nevertheless, a key focus of biosecurity discussions--the domain labeled "communication"--has not been fundamentally rethought, even as it has expanded and professionalized. Bracketing preconceived ideas about the term's content, the article traces debates about biosecurity "communication" from the 1990s to the present, drawing on ethnography and textual analysis. Using a notion of biocommunicability, the cultural modeling of how discourse is produced, circulates, and is received, the article analyzes assumptions regarding subjects, subject-positions, objects, spatializing and temporalizing practices, scales, economies of affect, and regimes of ethics that are built into discourse about "communication." Ironically, the conviction that "communication" is of marginal importance as a focus of critical inquiry, seemingly shared by most medical anthropologists, enables these assumptions to fundamentally shape discussions of biosecurity and emergency management.     

Clarifying the discussion on brain death

Definitions of death are based on subjective standards, priorities, and social conventions rather than on objective facts about the state of human physiology. It is the meaning assigned to the facts that determines when someone may be deemed to have died, not the facts themselves. Even though subjective standards for the diagnosis of death show remarkable consistency across communities, they are extrinsic. They are driven, implicitly or explicitly, by ideas about what benefits the community rather than what benefits the individual. The differences that do exist across communities generally reduce to questions about legitimacy and not fact. The questions at the core of the debate about brain death are better framed by asking: "Whom ought we deem to be dead?" rather than: "Who is dead." The rationale for equating brain death with death, therefore, extends well beyond somatic and biological concepts of death.     

Rorty's pragmatism and bioethics

In spite of the routine acknowledgement of Richard Rorty's ubiquitous influence, those who have invoked his name en route to advancing their case for a pragmatist bioethics have not given us a very clear picture of exactly how Rorty's work might actually contribute to methodological discussion in this field. I try to provide such an account here. Given the impressive depth and scope of Rorty's work during the past two decades, I make no pretense of presenting either a comprehensive or novel interpretation of his project. My primary aim here is simply to sketch what I take to be the implications of Rorty's neopragmatism for our methodological debates within bioethics. I conclude that the yield of Rorty's pragmatism for current methodological debates in bioethics is primarily negative, knocking the props out from under any pretensions to foundations and universal principles of right and wrong. His "professorial pragmatism" and philosophical trash disposal efforts would clearly sweep away some approaches based upon appeals to nature or universal human dignity, and his deflationary nominalist view of principles would threaten the foundations of some influential principlist approaches to bioethics.     

"For Jimmy and the boys and girls of America": publicizing childhood cancers in twentieth-century America

This paper examines a collection of images of children printed in cancer education and fund-raising materials distributed by voluntary health organizations, released by public relations departments of specialized cancer hospitals, and featured in popular magazines and newspapers beginning in the late 1940s. Children represented only a small fraction of all persons with cancer, yet they became a key component of the media campaign for the disease. What narratives were embedded in the photographs and profiles? Like the March of Dimes' use of young polio patients to promote their programs, "poster children" were strategically used throughout the mid-to-late twentieth century to advance principles of early cancer detection and prompt treatment; to illustrate or, at times, exaggerate promising biomedical advances in the field; and to elicit emotional responses and donations from a wide audience during the escalation of the war against cancer.     

A transhumanist fault line around disability: morphological freedom and the obligation to enhance

The transhumanist literature encompasses diverse non-novel positions on questions of disability and obligation reflecting long-running political philosophical debates on freedom and value choice, complicated by the difficulty of projecting values to enhanced beings. These older questions take on a more concrete form given transhumanist uses of biotechnologies. This paper will contrast the views of Hughes and Sandberg on the obligations persons with "disabilities" have to enhance and suggest a new model. The paper will finish by introducing a distinction between the responsibility society has in respect of the presence of impairments and the responsibility society has not to abandon disadvantaged members, concluding that questions of freedom and responsibility have renewed political importance in the context of enhancement technologies.     

Normative aspects of the human body

In cultural history the human body has been the object of a great variety of opposing valuations, ranging from "imago dei" to "the devil's tool". At present, the body is commonly regarded as a mere means to fulfill the wishes of its "owner". According to these wishes it can be technically improved in an unlimited way. Against this view the text argues for a conception of the human body as a valuable "common heritage". The "normal" human body as the result of natural and cultural history is an essential condition of the modern social and legal order. The consequences of its technical alteration should be the subject of public debates and common decisions.     

Breast cancer and the "materiality of risk": the rise of morphological prediction

This paper follows the history of "morphological risk" of breast cancer. In the early twentieth century, surgeons and pathologists arrived at the conclusion that specific anatomical and cytological changes in the breast are related to a heightened risk of developing a malignancy in the future. This conclusion was directly related to a shift from macroscopic to microscopic diagnosis of malignancies, and to the integration of the frozen section into routine surgery for breast cancer. In the interwar era, conditions such as "chronic mastitis" and "cystic disease of the breast" were defined as precancerous, and women diagnosed with these conditions were advised to undergo mastectomy. In the post-World War II era, these entities were replaced by "carcinoma in situ." The recent development of tests for hereditary predisposition to breast cancer is a continuation of attempts to detect an "embodied risk" of cancer and to eliminate this risk by cutting it out.     

Neoliberal Optimism: Applying Market Techniques to Global Health

Global health and neoliberalism are becoming increasingly intertwined as organizations utilize markets and profit motives to solve the traditional problems of poverty and population health. I use field work conducted over 14 months in a global health technology company to explore how the promise of neoliberalism re-envisions humanitarian efforts. In this company’s vaccine refrigerator project, staff members expect their investors and their market to allow them to achieve scale and develop accountability to their users in developing countries. However, the translation of neoliberal techniques to the global health sphere falls short of the ideal, as profits are meager and purchasing power remains with donor organizations. The continued optimism in market principles amidst such a non-ideal market reveals the tenacious ideological commitment to neoliberalism in these global health projects.     

What good is a pragmatic bioethic?

Do bioethicists need yet another theoretical approach with which to frame their disagreements? Many pragmatists contend that pragmatism, unlike its liberal and utilitarian counterparts, is uniquely commendable in (a) beginning from our lived experiences and (b) locating those experiences amid our social relations. In place of an "abstract principlism," pragmatism offers a practical "bedside-bioethic"; in lieu of "autonomy run amuk," pragmatism proposes an ethic rooted in our communal resources. To date, however, efforts to develop such a bioethic have been stymied by pragmatists' own abstract theoretical commitments, commitments that prevent them, most directly, from beginning with the lived experiences and communal resources of those who hold theological commitments. This self-imposed methodological constraint, I argue, has needlessly thwarted pragmatism's most striking methodological promise: its potential to cultivate productive debates among secular and theologically-informed participants.     

"Properly disposed of": a history of embryo disposal and the changing claims on fetal remains

This paper explores recent controversies concerning the disposal of embryonic and fetal remains in order to ask how such remains came to be classified as "medical waste." Based on archival research into the social history of human embryo collecting in Baltimore, Maryland, in the early 20th century, I argue that the classification of embryos and fetal remains as medical waste can be traced to a pragmatic alliance between embryologists and state functionaries. Embryologists relied on the state to assist them in acquiring thousands of human embryo remains for scientific study, while state authorities relied on embryologists to provide authoritative knowledge that could be used to facilitate state control over nascent citizens. This alliance contributed to the development of an "embryological worldview," in which human embryos were cast as objective biological "specimens" of use only to embryologists. This exclusive view of the social value of embryos and fetal tissue is now being challenged as other constituencies claim jurisdiction over the remains in order to advance diverse social agendas.     

From cancer families to HNPCC: Henry Lynch and the transformations of hereditary cancer, 1975-1999

Hereditary non-polyposis colorectal cancer (HNPCC) helps us understand how medical genetics has changed over the last forty years. The concept of the "cancer family" emerged from the realization that members of some families developed cancer more frequently than members of others, which led to a series of strategies by clinicians in the 1960s to persuade others of this. By the early 1990s molecular genetics had transformed the disease, from one that a few physicians believed ran in families, to one with precise genetic components that researchers generally accepted, and that could be detected through genetic tests. Nevertheless, a diagnosis of HNPCC still requires that the mutated genes be found within a kin group that is generally accepted as a cancer family. Moreover, the "cancer family" construct was crucial in the search for the HNPCC genes. HNPCC's trajectory can be mapped onto important debates about the complex relations between clinical and molecular genetics knowledge and practice.     

Medicine and the public: the 1962 report of the Royal College of Physicians and the new public health

The 1962 report of the Royal College of Physicians on smoking was a significant event in the history of smoking. Its significance was, however, more than smoking-specific: the RCP committee's appointment, its membership, its work, and the manner of its publication signified the changes within social medicine, and within the medical profession more generally, in postwar Britain. Doctors assumed the right to speak to the public and to government on matters of individual health, and a new risk-based public health was in the process of formation. A public health "policy community" formed, and governments began to assume responsibility for advising the public on health matters. The use of research in the report, and of social research in response to it, was important in the emergence of evidence-based medicine within public health. The paper argues for greater attention to the change in public health epitomized by the report in current debates on the concept of the 1960s "permissive society." It was the harbinger of a new style of "coercive permissiveness" in health.     

Whose disorder?: a constructive MacIntyrean critique of psychiatric nosology

The American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM) has for decades been a locus of dispute between ardent defenders of its scientific validity and vociferous critics who charge that it covertly cloaks disputed moral and political judgments in scientific language. This essay explores Alasdair MacIntyre's tripartite typology of moral reasoning--"encyclopedia," "genealogy," and "tradition"--as an analytic lens for appreciation and critique of these debates. The DSM opens itself to corrosive neo-Nietzschean "genealogical" critique, such an analysis holds, only insofar as it is interpreted as a presumptively objective and context-independent encyclopedia free of the contingencies of its originating communities. A MacIntyrean tradition-constituted understanding of the DSM, on the other hand, helpfully allows psychiatric nosology to be understood both as "scientific" and, simultaneously, as inextricable from the political and moral interests--and therefore the moral successes and moral failures--of the psychiatric guild from which it arises.     

"Just some spirits": the erosion of spirit possession and the rise of "tension" in South India

Based on research among possessed and mentally ill patients and an examination of depictions of mental health issues in the popular media in the state of Kerala, India, this article examines apparent changes in the incidence and form of spirit possession and the proliferation of psychological idioms such as "tension" and "depression." These changes involve a decline in the incidence of possession as well as the homogenization of the identities of spirits: spirits that were described as having names and personalities a few decades earlier are now presented as more anonymous. The homogenization of spirits and the use of psychological idioms are interpreted as signaling an erosion of context and the ascendance of universal categories, which, according to some theorists, is a characteristic of "modernity." It will also be shown that at the same time the "modern" can appear as simply another context, as when the idiom of possession permeates a psychological advice column in the print media.     

Human nature: an oxymoron?

The concept of human nature played an important role in the Aristotelian attempt to characterize the specific difference of humans from other animals and serves as a normative guide. But with the positivistic turn in the modern conception of nature and the denaturalization of reason (typically since Kant), the essential characteristic of human beings can no more be thought of as "natural". The idea of human nature is more commonly conceived as open-ended, and is associated, since Pico della Mirandola, with the human power of self-shaping or transcendence of one's nature. This rift between the human and the natural undermines the coherence of the traditional concept of human nature. Since the concept of human nature is often used in the debates about the moral legitimacy of contemporary genetic technologies, the critical analysis suggested in the first part of the article is used in the second part to assess the force of the argument from human nature in the context of germ line genetic manipulation, genetic engineering, eugenics, and cloning.