Contemporary publics actively engage with diverse forms of media when seeking health-related information. The hugely popular digital media platform YouTube has become one means by which people share their experiences of healthcare. In this paper, we examine amateur YouTube videos featuring people receiving Deep Brain Stimulation (DBS) for the treatment of Parkinson's disease. DBS has become a widely implemented treatment, and it is surrounded by high expectations that can create difficulty for clinicians, patients and their families. We examine how DBS, Parkinson's disease, and DBS recipients themselves, are delineated within these YouTube videos. The videos, we demonstrate, contain common compositional and stylistic elements that collectively represent DBS as a technological fix, and which accentuate the autonomy of the DBS recipient. The relational, interpersonal dimensions of chronic illness, and the complex impact of DBS on family dynamics, are elided. We therefore shed light on the means by which high expectations regarding DBS are sustained and circulated, and more generally, we illustrate how potentially powerful representations of medical technologies can emerge from the intersection of social media platforms, afflicted bodies and patient narratives.
What and where is ethics in gene therapy? Historical debates have identified a set of ethical issues with the field, and current regulatory systems presume a discrete ethics that can be achieved or protected. Resisting attempts at demarcation or resolution, we use the notions of "ordinary" or "everyday" ethics to develop a better understanding of the complexities of experimental gene therapy for patients, families, and practitioners and create richer imaginings of ethics in the gene therapy sphere. Drawing on ethnographic research in several clinical trials, we show that patients/parents can acquire some control in difficult medical situations, and practitioners can attune their care to their patients' needs. The human provenance of gene therapy practice, and the irreducible sociality of ethics, means that understanding the ethics of this medical field also requires understanding the everyday worlds and relationships of those at its heart.
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.
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