Arien Mack, Editor
Assumptions about the "normal," "healthy," and "acceptable" body lead to policies around the world that are unjust. Papers in these two issues examine the body as an international human rights arena in which competing forces—including religion, science, medicine, media, and the market—struggle for control over the policies that regulate our bodies.
PART I. WHO HAS RIGHTS TO THE BODY
At first look, it might seem that the papers in this section concern themselves with the edges of life, with the places where human beings are not yet or cease to be, with extreme states of pain or of unconsciousness at the outer reaches of bodily experience. However, the collective effect of these studies is to take apart any such idea of clear markers for the beginnings, the endings, or the extremes of human presence. They erode any stable boundaries between birth and death, between conscious and unconscious life, between what stays animate and present in a shared cultural imagination and what, however corporeal, can be made to disappear.
Although conventionally tracked in the "overdeveloped world" (to use philosopher Sandra Harding's felicitous phrase), assistive reproductive technologies are now available in many parts of the globe. This review essay reports on qualitative social science research on techniques such as In Vitro Fertilization, egg purchase, gestational surrogacy, and sex selection across national boundaries. It highlights the disruptions and recuperations of gender and generational relations; religious and legislative regulation; and the opportunities as well as oppressions that the commercialization of the reproductive body entail.
The 2010 national health reform law was written with heavy input from insurance and pharmaceutical corporations. Unfortunately, the law will leave 24 million Americans uninsured and tens of millions more woefully underinsured, such that a major illness would bankrupt them. Other developed nations have used non-profit, single-payer national health insurance to fully cover all of their residents for all needed medical care. By failing to enact such a program, the state has abdicated its responsibility to protect human health to profit-seeking corporations.
Our essay will address both the right-to-die movement in America and the emerging culture of neglect in the treatment of a class of patients with disorders of consciousness with which the right-to-die movement is entwined. We trace the etiology of these two themes through changes in our scientific understanding of brain injury and recovery against a growing societal acculturation to dominion over one's self at life's end.
The torture prohibition is not just one rule among many. Its status as an absolute prohibition in both domestic and international law suggests that it lies at the very foundation of the rule of law. Yet, the prohibition is oddly discontinuous with other practices of state sanctioned violence. I argue here that the prohibition functions as much as symbol as norm. To explain what it symbolizes, I deploy some of the interpretive methodology Freud used to interpret dreams. The torture prohibition is a kind of waking dream. As with other dreams, we must pierce the manifest content to reveal the unconscious meaning. The prohibition, I argue, comes less from a concern about victims than about torturers, for the right to torture was a claim of the sacral monarch. The affective weight of the prohibition emerges from the relationship of law to sovereignty, and to the violent, sacrificial demand of even a popular sovereign.
Modern, liberal democratic states and civilized, squeamish moderns would rather avoid the sights, sounds, and smells of the body in pain. So we eliminate them where that is possible and we hide them behind the scenes when it is not. The body thus creates a problem for modern liberal state punishment, especially in the United States, where nonphysical penalties, such as fines, restitution, or compensation, are notably underdeveloped and where mass imprisonment and capital punishment dominate the penal scene. The problem is that the human body is the unavoidable object of state punishment even when it is avowedly not punishment's target. It is this problem of the body, and the state's handling of it, that I would like to explore.
This essay is about the anthropology of the dead body in deep time and about its work in particular places at particular times. I offer an exemplary case of how anthropological claims are translated into the work of the dead in ways that have little to do with, or are even contrary to, specific beliefs about status of the body, the soul, and afterlife and a great deal to do with the kind of anthropological claims I have been making.
PART II. BUYING AND SELLING THE BODY
These papers return to the notion of invisibility introduced by Didier Fassin elsewhere in this volume and investigate the practices that create and then exploit invisible bodies-bodies that emerge as invisible by the very practices that mine the body for resources, services, or knowledge. We also see the emergence of legitimized markets that offer essential medicines and reproductive services that remain inaccessible to particular bodies-namely, those that continue to be marginalized or exploited by a biomedical research model that does not uphold distributive or procedural justice. This model operates such that some bodies serve as sites of experimentation or bodily goods, while those same bodies suffer from lack of access to drugs, technologies, and legal protections that could improve and protect their lives. These papers then bring into question social justice within the context of values, calling attention to the fact that societies will pursue economic capital at the expense of social capital.
This project places at its center the urgency for a more responsive organ transplant policy in the United States. It studies how relationships and affinity affiliations motivate intimate exchanges, including human biological markets. Specifically, the article considers whether affinity relationships might serve as a platform in the domain of organ transplantation and if so, whether the law should tolerate discriminatory behavior in the human biologics realm. In defining affinity relationships, the article speaks primarily to race, gender, and sexual orientation. Its theoretical underpinnings, however, could also apply to religion. The theoretical hunch of the article is that affinity relationships could play a role in motivating transplant procurement.
This article is based on a chapter of my forthcoming book, A World Cut in Two: The Global Traffic in Organs (University of California Press). My debts to those who have assisted the Organs Watch project are too numerous to be acknowledged here. The late "Micky" Friedlaender of Hadassah Hospital was an invaluable friend and feisty interlocutor on the ethics and practice of transplantation. Meira Weiss, esteemed anthropological colleague and friend, and Dr. Chen Kugel, military IDF commissioned officer (reserve) and senior pathologist, each paid dearly for their love of truth, of their professions, and their patriotism. Their work on this subject paved the way for the writing of this article.
The popular fascination with forensic science, DNA bio-banks and TV shows such as CSI have created a belief that the law can track down any criminal and that only a small sample from his or her body is needed to prove whether he or she is guilty or innocent. In recent years, however, there were a number of cases of forensic scientists tampering with DNA evidence. Psychoanalysis raises the question of whether such cases present us with individuals who derive a perverse pleasure from making "mistakes" in their testimonies. For a pervert is not only someone who seeks a particular sexual pleasure (such as a voyeur, masochist, sadist or exhibitionist), a pervert might very well be someone who enjoys the empowerment of speaking from a position of self-righteousness. When a forensic scientist goes to the extreme of making false claims about DNA evidence, we have the right to ask just why he or she relishes being an authority who (often in the name of morality) can manipulate other people's lives. The question also exists as to why the legal profession has such a hard time questioning expert testimonies and why the public places such faith in the power of DNA.
The biosciences have become information sciences, in which knowledge is often produced in silica, by the manipulation and analysis of large datasets. Genomics has been at the forefront of the data explosion and is a model for bioscience as a large-scale endeavor. Large genome research datasets are frequently shared through research repositories. To protect the interests of people from whom the data were derived (data sources), human data are often shared through a controlled access mechanism, in which data repositories can, in theory, place limitations on who uses the data and for what purpose. Controlled access is an innovative governance mechanism, but it may not protect data sources the way policy makers intended. Here, I describe one controlled access process in some detail, and provide insight into how and why researchers fail to comply with data use restrictions.
The outsourcing and offshoring of clinical trials has expanded a global field of experimental activity. This essay addresses the competitive logic and social norms by which a field of human subjects research for drug development has taken form. The clinical trials industry and its move to low- and middle-income countries (particularly in eastern Europe) serve as a telescope into the global clinical trial and how it is crafted and made to work in different locales. Lives often depend on new medical commodities as they enter (via the trial) the value chains of transnational medicine and capital. Transparency remains a key problem. The essay explores the politics of creating centralized registries through which the scope of this experimental enterprise might be known. As the engine of pharmaceutical research molds itself to international and national regulatory norms, detection of adverse risk can be deferred or minimized. The essay also points to policy gaps with respect to how the benefits and insecurities of global experiments are distributed as well as to emergent political practices of care and accountability.
The outsourcing and offshoring of clinical trials has expanded a global field of experimental activity. This essay addresses the competitive logic and social norms by which a field of human subjects research for drug development has taken form. The clinical trials industry and its move to low- and middle-income countries (particularly in eastern Europe) serve as a telescope into the global clinical trial and how it is crafted and made to work in different locales. Lives often depend on new medical commodities as they enter (via the trial) the value chains of transnational medicine and capital. Transparency remains a key problem. The essay explores the politics of creating centralized registries through which the scope of this experimental enterprise might be known. As the engine of pharmaceutical research molds itself to international and national regulatory norms, detection of adverse risk can be deferred or minimized. The essay also points to policy gaps with respect to how the benefits and insecurities of global experiments are distributed as well as to emergent political practices of care and accountability.
Drawing upon an exemplary case surrounding a patent on the anti-cancer drug Gleevec, I trace how intellectual property regimes drive the re-institutionalization of pharmaceutical development in India today in unsettled and contested ways. I am interested in how this case resolves, in an apparent purification, into technical and constitutional components; how the technical components are entirely unsettled; and how the constitutional components open up questions regarding the relationship between biocapital and issues of constitutionalism, rights, and corporate social responsibility.