Ian Whitmarsh

Ethical, Legal, and Social Concerns About Expanded Newborn Screening: Fragile X Syndrome as a Prototype for Emerging Issues

Technology will make it possible to screen for fragile X syndrome and other conditions that do not meet current guidelines for routine newborn screening. This possibility evokes at least 8 broad ethical, legal, and social concerns: (1) early identification of fragile X syndrome, an “untreatable” condition, could lead to heightened anxiety about parenting, oversensitivity to development, alterations in parenting, or disrupted bonding; (2) because fragile X syndrome screening should be voluntary, informed consent could overwhelm parents with information, significantly burden hospitals, and reduce participation in the core screening program; (3) screening will identify some children who are or appear to be phenotypically normal; (4) screening might identify children with other conditions not originally targeted for screening; (5) screening could overwhelm an already limited capacity for genetic counseling and comprehensive care; (6) screening for fragile X syndrome, especially if carrier status is disclosed, increases the likelihood of negative self-concept, societal stigmatization, and insurance or employment discrimination; (7) screening will suggest risk in extended family members, raising ethical and legal issues (because they never consented to screening) and creating a communication burden for parents or expanding the scope of physician responsibility; and (8) screening for fragile X syndrome could heighten discrepancies in how men and women experience genetic risk or decide about testing. To address these concerns we recommend a national newborn screening research network; the development of models for informed decision-making; materials and approaches for helping families understand genetic information and communicating it to others; a national forum to address carrier testing and the disclosure of secondary or incidental findings; and public engagement of scientists, policy makers, ethicists, practitioners, and other citizens to discuss the desired aims of newborn screening and the characteristics of a system needed to achieve those aims.

Slow Research: Thoughts for a Movement in Global Health

Slow research, like slow food, is good for health.The impetus for this article arises from a shared desire for rethinking our approach to Global Health. The field of Global Health, arising from the...

Hyperdiagnostics: Postcolonial Utopics of Race-Based Biomedicine

The expansion of biomedical research into countries outside the United States and Western Europe is positing new biological links between populations based on race. This expansion includes six international projects occurring in Barbados, premised on the idea that the population is genetically representative of other black people. Based on ethnographic research tracking one such study, a genetics of asthma project, this article explores the ways Caribbean meanings of ethnicity and illness are reworked as Barbadian state medical practitioners become involved in facilitating the international genetics research on race and disease. As the state attempts to participate in an imagined future of genetic medicine, the hyperspecificity of genetic technologies create new medical meanings of race and disease. These changes rely on a paradoxical response by medical practitioners toward the high technology American genetic research as both authoritative and inapplicable, creating unexpected etiologies of illness and ethnicity.

Nonsecular Medical Anthropology

ABSTRACT A nonsecular medical anthropology insists on the ways medicine and science have constituted ‘the secular’ itself through the ‘secular self’—how medical knowing has been used to craft the secular political subject. As James Boon noted, too often in social theory, “religion gets safely tucked away—restricted theoretically to ‘meaning’ rather than power” (1998:245). The authors of the six articles in this special issue ‘untuck’ religiosity from within the norms and numbers of medicine itself, and examine how ‘secular’ medicine has relied on religious traditions to produce political secularity. These articles demonstrate that ‘secular’ medicine relies on religious others whose exclusion bespeaks latent religious commitments of citizenship in the modern political realm of health.

American Genomics in Barbados: Race, Illness, and Pleasure in the Science of Personalized Medicine

Barbados is a center of international genetic research premised on race. Drawing on ethnographic fieldwork following Johns Hopkins studies carried out in Barbados, this article explores this travel for research. This biomedical science relies on a conflicting significance of Barbados: as a site of suffering, due to the disparities of disease, and, conversely, a site of ease, playing on desires and pleasures of escaping too much asceticism in biomedicine. For the American researchers, Barbados becomes a locus of desire to ethically address the African diaspora without the quandaries of accusations and recriminations experienced in carrying out such work in urban America. The concept of cathartic science is used to describe an endeavor that creates a controlled space to know and act on some perceived sufferer without risk of being complicit in the suffering. These medical migrations of researchers to Barbados are paralleled by Bajan families participating in the American studies as a kind of proxy medical migration to the US, bitterly reflecting on the care available to them at home. This article explores the motives of this mutual travel, as a biomedicalized Barbados becomes a spectral figure for patients and researchers fraught with race, injustice, and desire. The article extends the concept of cathartic science from genomics of race to medical anthropology to foreground the desires and anxieties of any science of suffering.

Troubling "environments": postgenomics, Bajan wheezing, and Lévi-Strauss.

Postgenomics is intended to move beyond the search for genes to explore disease as a result of genes interacting with their environment, revealing how they have relevance for health. This addition of environment confers genomic research with new cultural life, making it relevant to public health discourse, government interventions, and health disparities. Drawing on ethnographic research following an American genetics of asthma study conducted in Barbados, I explore the ways environment gets construed by the multiple communities involved-U.S. researchers, Bajan officials, medical practitioners, and patient participants. I draw on Lévi-Strauss to argue that plural competing environments give mana to the American postgenomic project as intervention on racial injustice, household practices, pollution, and other aspects of asthma.

The No/Name of the Institution

Anthropologists have lately sought a subject not containable within the institutions that we analyze. This article suggests we should do the same for institutionality. I define “institutions” as things with the authority of the no/name—to confer the taboo—which includes discourses, rituals, and bureaucracies. The article calls for extending to the institution what we usually ascribe to the subject—violence, but also whatever we oppose to that, such as care or love. Anthropologists and psychoanalysts have an institution long considered a source of love through violence, and violence in love: kinship. This article works through contemporary anthropological queries on the subject, violence, and love in order to explore the possibilities in approaching all institutionality as acting like kinship. Drawing on Claude Lévi-Strauss, E.E. Evans-Pritchard, and Jacques Lacan, kinship is shown to be an institution comprised of a plurality of hierarchies, each of which might undermine the other, creating taboos that call for their own transgression. The article argues that this radical ambivalence in the institution finds desires within needs, displaces the individual as the source of possibility, and locates any radical potential of love within the institution. I call such ambivalence, following Lacan, the no/name of the institution.

The Dilemmas of Appreciation

James A. Boon stands for careful reading and never-ending rereading. The texts he interprets are as various as menstruation (drifting or stable, as spotted in the work of Ruth Benedict), The Ring Cycle (by Wagner), the cousin category (perpetually and systematically contradictory), vertigo (the movie and its condition), pigs with ornate tusks (a bit like fancy cars), and things multiply-mediated (such as opera). In this endeavor, Boon listens to the plurality of accents, the play of movement and countermovement, the asides, and the “resonant details” (Boon 1999:65). He turns the idea that any text always contains surprises into a way of being in the world. As he puts it, “The straight...is crooked too: and so is the crooked” (1999:97). He also stands for careful writing (see Boon this issue). And then, he tells us that the two processes are to be joined, as in writing-to-read and reading-to-write. The texts he writes therefore respond with a reciprocal plenitude, striving toward the mutual givingand-receiving of extremes that constitute possibility.

What's Mine Isn't (and Neither is What's Yours): Desire as Debt, the Lacanian Lack, and the Boonian Gift

ABSTRACT:This very brief essay is structured by the claim that James Boons work suggests the radical idea that Lacanian desire is Mausss debt. Boon makes any ethics, discourse, or materiality always between, only existing in the paradoxical turning of a distinction toward its absence elsewhere (and vice versa). I juxtapose texts by Boon, Lacan, and Freud to hear how each emphasizes a paradox that is latent or absent in the other—I listen for each others alternating sounds. And I explore what this means for epistemological uses of sexuality, the good, and jouissance. Reading through Žižek and Boon on antinomies of the feminine, the masculine, and their others, I argue that Boon allows a relational androgyny missing in Žižeks ouvre. Boons sense of the carnivalesque makes for an analytic that ties misery to ecstasy, the abject to laughter. I speculate that this tradition suggests that our anthropological empathies might bespeak repressed desire. And I end with Boons sense of irony, an ethics of debt toward even what is being renounced. My interest then is to explore the ways Boons notion of exchange offers an ethics that is deeply—and richly—unsettling of some of what we hold dear.