The difference that difference makes: bioethics and the challenge of "disability"

Two rival paradigms permeate bioethics. One generally favors eugenics, euthanasia, assisted suicide and other methods for those with severely restricting physical and cognitive attributes. The other typically opposes these and favors instead ample support for "persons of difference" and their caring families or loved ones. In an attempt to understand the relation between these two paradigms, this article analyzes a publicly reported debate between proponents of both paradigms, bioethicist Peter Singer and lawyer Harriet McBryde Johnson. At issue, the article concludes, are two distinct axiomatic sets of values resulting in not simply different styles of rhetoric but different vocabularies, in effect two different languages of ethics.     

On a bioethical challenge to disability rights

Tensions exist between the disability rights movement and the work of many bioethicists. These reveal themselves in a major recent book on bioethics and genetics, From Chance to Choice: Genetics and Justice. This book defends certain genetic policies against criticisms from disability rights advocates, in part by arguing that it is possible to accept both the genetic policies and the rights of people with impairments. However, a close reading of the book reveals a series of direct moral criticisms of the disability rights movement. The criticisms go beyond a defense of genetic policies from the criticisms of disability rights advocates. The disability rights movement is said not to have the same moral legitimacy as other civil rights movements, such as those for women or "racial" minorities. This paper documents, and in some cases shows the flaws within, these challenges to the disability rights movement.     

Epistemic humility and medical practice: translating epistemic categories into ethical obligations

Physicians and other medical practitioners make untold numbers of judgments about patient care on a daily, weekly, and monthly basis. These judgments fall along a number of spectrums, from the mundane to the tragic, from the obvious to the challenging. Under the rubric of evidence-based medicine, these judgments will be informed by the robust conclusions of medical research. In the ideal circumstance, medical research makes the best decision obvious to the trained professional. Even when practice approximates this ideal, it does so unevenly. Judgments in medical practice are always accompanied by uncertainty, and this uncertainty is a fickle companion--constant in its presence but inconstant in its expression. This feature of medical judgments gives rise to the moral responsibility of medical practitioners to be epistemically humble. This requires the recognition and communication of the uncertainty that accompanies their judgment as well as a commitment to avoiding intuitive innovations.     

The Ashley Treatment: furthering the anthropology of/on disability

Questions regarding access to and the use of medical and surgical treatment for people with disabilities revisit themes central to medical anthropology. The "Ashley Treatment" is named after a nine-year-old girl, Ashley, who has extreme physical and cognitive disabilities. The Treatment refers to extensive medical and surgical procedures that are claimed to improve quality of life and prevent future medical problems. The Treatment has stimulated lively public debate on disability, medicalization, and caregiving. We illustrate how the Ashley Treatment emphasizes the importance of medical anthropological research on the construction of personhood and childhood disability, agency and autonomy, and the rights of representation and control, as well as the ethics of invasive procedures, hormone therapy, and body modification surgery.     

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.     

"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.     

The twilight of "medicine" and the dawn of "health care": reflections on bioethics at the turn of the millennium

The traditional paradigm of medicine assumes that health is a natural given depending on a body's intrinsic teleology, and that medicine aims at restoring or preserving health, making a physician only an "assistant to nature." I argue that nowadays this paradigm is becoming obsolete, because the concept of health is no longer a "natural given" and interventions on the human body attempt not only to help nature's teleology, but also to change it whenever doing so can satisfy human needs and wants. We should abandon the term "medicine" and adopt the term "health care" to mark such an epoch-making transition, analogous to that marking the passage from "alchemy" to "chemistry."     

"Summus atque felicissimus salium": the medical relevance of the liquor alkahest

This paper analyzes the development of the concept of alkahest from its origins in the Paracelsian corpus to its mature form in the works of Joan Baptista van Helmont (1579-1644) and his successors. Historians of science have usually focused on the chemical aspects of the alkahest, taking into account especially the claims that it was a substance capable of dissolving all kinds of matter. This paper shows the medical implications of the alkahest: it was not only a "solvent," but an important means of revealing nature's secrets and of producing medicines. The properties ascribed to the alkahest fit perfectly within Helmontian theories about matter, disease, and cure.     

"A variety of tastes": the Lancet in the early-nineteenth-century periodical press

This article examines the opening years of Thomas Wakley's 1823 journal the Lancet, which rose to dominate the precarious early-nineteenth-century medical publishing market. The author argues that Wakley was an editor acutely aware of his journal's relationship to a wider nonmedical press and that this awareness may have even contributed to the Lancet's early success. In addition to, and often contiguous with, the journal's strongly worded critique and detailed medical content, Wakley sought to attract readers by importing entertaining formal components from lay periodicals.     

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.     

Reasons of the heart: emotion, rationality, and the "wisdom of repugnance"

Much work in bioethics tries to sidestep bedrock questions about moral values. This is fine if we agree on our values; arguments about human enhancement suggest we do not. One bedrock question underlying these arguments concerns the role of emotion in morality: worries about enhancement are derided as emotional and thus irrational. In fact, both emotion and reason are integral to all moral judgment.     

"Looking for children": the search for fertility among the Sara of southern Chad

Despite the long history of infertility and childlessness in Central Africa, and the ongoing demand for treatment of fertility-related problems, the interpretations and experiences of the men and women living in the region vis-à vis the inability to have children remain largely unrecorded. In this paper I examine what the Sara, one of Chad's largest ethnic groups, have to say about fertility problems, and how these views are linked to changes in the social, cultural, and economic landscape of southern Chad in the 20th century. I describe the iterative and inductive process, commonly referred to by the Sara as "doing research," that the Sara use to explore the reasons for the inability to conceive or bear children in the face of multiple reproductive threats. The Sara's causal constructions convey a holistic and multifaceted perspective on this demographic anomaly--a perspective that is missing from most demo graphic and epidemiologic accounts and that has important implications for public health policy and practice.