An ethics of enchantment: forming affect and information in experimental paediatric medicine

Abstract

Science and medicine have been cast as disenchanted arenas of modernity, even as scholars have illustrated the many enchantments of everyday life. Taking these conversations into the context of experimental paediatric medicine, I explore the dis/enchantments produced through the research ethics systems that govern interactions between medical practitioners and patients' families. Research ethics enact forms of disenchantment, aiming to produce the informed patient-subject who can knowingly submit to the unknowns of experimental medicine. However, by following one young patient's emotive disruption of the consent process, I suggest that we instead consider an ethics of enchantment: one that recognizes the affective logics of patienthood alongside the informatic. Elaborating how ethical practice is both institutionally structured and interpersonally improvised, I develop key conversations from the anthropology of ethics, and highlight the interplay of enchantment and disenchantment that constitutes modern medical subjects.

Virtuous Indecisiveness

“…This did not, however, prevent her from breaking down in the aftermath. Rather than recovering the comfortable moral world, the negative result evoked a moral and emotional breakdown (compare Addison 2022) and a spell of further ethical labor, riddling the taken‐for‐granted moral assumptions about what constitutes appropriate parental demeanor in the face of tentative disability with tension 16…”

“…In Japan, fetal death is acknowledged with a death certificate from as early as twelve weeks of gestation. In the hospital where Ivry conducted field work, the death of a fetus was recognized and commemorated with a structured ritual that Courtney Addison (2022, 268) might identify as an “enchanting turn.” The mid‐wives dress the dead baby in a tiny cotton kimono and arrange it in a special box surrounded with origami flowers. The parents, accompanied by the medical staff, carry the box down a side corridor to a quiet circular room with no religious symbols where they light incense and pray silently.…”

“…Under the auspices of structural ambivalence, genetic counseling becomes dedicated to creating space for prospective parents’ ethical deliberations no less than providing them with accessible scientific knowledge (compare Addison 2022). Patients must make up their own minds, but counselors are committed to support their pre‐diagnostic deliberations in preparation for possible future strife.…”

“…Furthermore, we are inspired by Lambek's (2015, 45) emphasis on ethics as a quality of action and action's spirit and by Lambek's (2015, 8) and Arthur Kleinman's (2007) insights on virtue as an important entry point to understanding what matters to people. Our analysis is further informed by notions of bioethics as a symptom of social transitions (Rosenberg 1999) and a product of ambivalence toward progress (Lock 1998; Stevens 2003) and, more specifically, by ethnographic explorations of the emergence of affect in institutional ethics (e.g., Addison 2022). We explore what happens when ethical labor is enacted within a local moral assemblage informed by, among others, institutional respect for ethical ambivalence and a recent history of eugenic state policies.…”

Ethical Endeavours

“…Lastly, several articles engaged with the complex and much-debated question of how to establish ethical relationships with interlocutors or 'research subjects' -in anthropology, but also in other fi elds (e.g. on dis/enchantments produced through the research ethics systems that govern experimental paediatric medicine, see Addison 2022). Most of the articles focused on challenges of ethnography, such as (im)possibilities of translation (Lebner 2022;Taylor 2022), doubts, uncertainties and moral obligations connected to the fi eldworker positionality (Kaell 2022;Pina-Cabral 2022b;Wintrup 2022), or how to deal with and write about ambivalent attitudes towards interlocutors (Rakopoulos 2022b;Wintrup 2022).…”