Disease, Communication, and the Ethics of (In)Visibility 11(4)

Monika Pietrzak-Franger and Martha Stoddard Holmes
As the recent Ebola outbreak demonstrates, visibility is central to the shaping of political, medical, and socioeconomic decisions. The symposium in this issue of the Journal of Bioethical Inquiry explores the uneasy relationship between the necessity of making diseases visible, the mechanisms of legal and visual censorship, and the overall ethics of viewing and spectatorship, including the effects of media visibility on the perception of particular “marked” bodies. Scholarship across the disciplines of communication, anthropology, gender studies, and visual studies, as well as a photographer’s visual essay and memorial reflection, throw light on various strategies of visualization and (de)legitimation and link these to broader socioeconomic concerns. Questions of the ethics of spectatorship, such as how to evoke empathy in the representation of individuals’ suffering without perpetuating social and economic inequalities, are explored in individual, (trans-) national, and global contexts, demonstrating how disease (in)visibility intersects with a complex nexus of health, sexuality, and global/national politics. A sensible management of visibility—an “ecology of the visible”—can be productive of more viable ways of individual and collective engagement with those who suffer.

Remembering Stephanie

Charlee Brodsky
Stephanie Byram was my friend who died at age 38 of breast cancer. Stephanie and I worked together during her illness to share how she lived a full life, even with the dire prognosis of an incurable disease. We produced gallery exhibitions, various articles, a book, and a video. This essay is a remembrance of Stephanie, 12 years after her death.

Documenting Women’s Postoperative Bodies: Knowing Stephanie and “Remembering Stephanie” as Collaborative Cancer Narratives

Mary K. DeShazer
Photographic representations of women living with or beyond breast cancer have gained prominence in recent decades. Postmillennial visual narratives are both documentary projects and dialogic sites of self-construction and reader-viewer witness. After a brief overview of 30 years of breast cancer photography, this essay analyzes a collaborative photo-documentary by Stephanie Byram and Charlee Brodsky, Knowing Stephanie (2003), and a memorial photographic essay by Brodsky written ten years after Byram’s death, “Remembering Stephanie” (2014). The ethics of representing women’s postsurgical bodies and opportunities for reader-viewers to engage in “productive looking” (Kaja Silverman’s concept) are the focal issues under consideration.

Disease, Risk, and Contagion: French Colonial and Postcolonial Constructions of “African” Bodies

Carolyn Sargent and Stéphanie Larchanché
In this article, we explore how sub-Saharan African immigrant populations in France have been constructed as risk groups by media sources, in political rhetoric, and among medical professionals, drawing on constructs dating to the colonial period. We also examine how political and economic issues have been mirrored and advanced in media visibility and ask why particular populations and the diseases associated with them in the popular imagination have received more attention at certain historical moments. In the contemporary period we analyze how the bodies of West African women and men have become powerful metaphors in the politics of discrimination prevalent in France, in spite of Republican precepts that theoretically disavow cultural and social difference.

African Kaposi’s Sarcoma in the Light of Global AIDS: Antiblackness and Viral Visibility

Pawan Singh, Lisa Cartwright, and Cristina Visperas
Drawing on the theoretical frameworks of antiblackness and intersectionality and the concept of viral visibility, this essay attends to the considerable archive of research about endemic Kaposi’s sarcoma (KS) in sub-Saharan Africa accrued during the mid-20th century. This body of data was inexplicably overlooked in Western research into KS during the first decade of the AIDS epidemic, during which period European and Mediterranean KS cases were most often cited as precedents despite the volume of African data available. This paper returns to the research on KS conducted in Africa during the colonial and postcolonial period to consider visibility, racial erasure, and discourses of global epidemiology, suggesting that the dynamics of medical research on HIV/AIDS have proceeded according to a tacit paradigm of antiblackness manifest in multiple exclusions of Africa from global health agendas—most recently the exclusion of the region from antiretroviral (ARV) drug therapy during the first decades of the treatment’s availability. During that decade KS all but disappeared among people with access to ARV therapy while KS became even more prevalent in sub-Saharan Africa, escalating along with HIV.

“When Pirates Feast … Who Pays?” Condoms, Advertising, and the Visibility Paradox, 1920s and 1930s

Paula A. Treichler
For most of the 20th century, the condom in the United States was a cheap, useful, but largely unmentionable product. Federal and state statutes prohibited the advertising and open display of condoms, their distribution by mail and across state lines, and their sale for the purpose of birth control; in some states, even owning or using condoms was illegal. By the end of World War I, condoms were increasingly acceptable for the prevention of sexually transmitted disease, but their unique dual function—for disease prevention and contraception—created ongoing ambiguities for sellers, consumers, and distributors as well as for legal, political, health, and moral leaders. Not until the 1970s did condoms emerge from the shadows and join other personal hygiene products on open drugstore and supermarket shelves and in national advertisements. Then came the 1980s and AIDS when, despite the rise of Ronald Reagan, the radical right’s demonization of condoms, and the initial reluctance of condom merchants to market to gay constituencies, the HIV/AIDS epidemic slowly but inexorably propelled the condom to the top of the prevention agenda. The condom’s journey from lewd device to global superstar was fitful, but colorful. The Comstock Act of 1873, prohibiting birth control information and devices, created a vast underground operation—periodically illuminated, however, by arrests, protests, legal proceedings, and media coverage. This essay chronicles one such moment of illumination: the legal battle in the 1920s and 1930s over the legitimacy and legality of the Trojan Brand condom trademark and the unusual series of advertisements produced by the Youngs Rubber Corporation, makers of Trojans, to dramatize the ethical and economic issues of the trademark battle. Culminating in Youngs Rubber Corporation v. C.I. Lee & Co., Inc. (45F, U.S. Court of Appeals for the Second Circuit 103 [1930]), this landmark case in trademark law established the right of the Trojan Brand condom, despite its ambiguous dual function, to the protection of a federal trademark. I seek to show how the Youngs antipiracy ad series illuminates the paradox of visibility by illuminating the paradox of any binary division: to establish the one depends inevitably on invoking or making visible—even if to suppress—the other. This essay is a case study in the negotiation of such a dialectic.

Original Research

Questions and Answers on the Belgian Model of Integral End-of-Life Care: Experiment? Prototype?

Jan L. Bernheim, Wim Distelmans, Arsène Mullie, and Michael A. Ashby
This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors.

Someone Is Watching You: The Ethics of Covert Observation to Explore Adult Behaviour at Children’s Sporting Events

Simon R. Walters and Rosemary Godbold
Concerns have been expressed about adult behaviour at children’s sporting events in New Zealand. As a consequence, covert observation was identified as the optimal research method to be used in studies designed to record the nature and prevalence of adult sideline behaviour at children’s team sporting events. This paper explores whether the concerns raised by the ethics committee about the use of this controversial method, particularly in relation to the lack of informed consent, the use of deception, and researcher safety, were effectively managed. This is achieved by reflecting on the conduct and findings of the research and by drawing on the perspectives of research assistants who carried out the covert observation. The authors argue that in the context of these studies, the ends have justified the means and with careful attention to the design of the study the complex ethical tensions arising from the use of this method can be managed.

Los Torturadores Medicos: Medical Collusion With Human Rights Abuses in Argentina

Andrew Perechocky
Medical collaboration with authoritarian regimes historically has served to facilitate the use of torture as a tool of repression and to justify atrocities with the language of public health. Because scholarship on medicalized killing and biomedicalist rhetoric and ideology is heavily focused on Nazi Germany, this article seeks to expand the discourse to include other periods in which medicalized torture occurred, specifically in Argentina from 1976 to 1983, when the country was ruled by the Proceso de Reorganización Nacional military regime. The extent to which medical personnel embedded themselves within the Proceso regime’s killing apparatus has escaped full recognition by both scholars and human rights activists. This article reconstructs the narrative of the Proceso’s human rights abuses to argue that health professionals knowingly and often enthusiastically facilitated, oversaw, and participated in every phase of the “disappearance,” torture, and mass murder process.

Case Studies

The Liminal Body

Paul H. Mason

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