AAA Annual Meeting 2026 - "On the Verge"

This year's annual meeting for the American Anthropological Association runs 18-22 November 2026. The conference theme is "On the Verge", which invites questions and thinking around the current moment as a threshold of sorts, as a space of possibility and transformation. Abby is presenting on a panel focused on "Research practices, ethics and implementation" with a paper titled: Trial meantimes, ongoing conditions: The asymmetrical temporalities of data and care practices in home-based clinical trials for paediatric rare disease.

Paper Abstract:

This paper explores the multiple, overlapping temporalities of data and care practices in the context of home-based clinical trials for paediatric rare disease. Trial temporalities are oriented towards improving care for future patients through forming better understandings of a condition, trialling new interventions, or piloting technologies for further data production in the home. Participants’ temporalities revolve around the demands of trail participation, the rhythms of everyday life, and the ongoing management of a rare disease. Drawing from an ethnography of home-based clinical trials and paediatric rare disease, this paper employs Masquelier and Durham’s (2023) “meantime” alongside the anthropologies of care, data, and time, to apprehend the entanglements and asymmetries between these distinct yet co-existing temporalities. The episodic nature of a trial protocol (eligibility screening; consent and enrolment; site visits; at-home measurements; follow-up) is juxtaposed with practices that are fundamental for the participants but often peripheral to the trial: daily negotiations of a rare disease, worries of future deterioration, and hopes for possible treatments. In a meantime between the commencement of the trial and a time when the trial’s benefits might be realised for others, families do their own sense-making of data produced during their child’s trial participation, sometimes incorporating this data into the ways they navigate disease and provide care. Trial meantimes orient us toward the elongated temporal practices of care for a chronic condition—the active periods of not just waiting for possible futures, but engaging in lives that are already shaped by those futures—and make visible complexities that may not have been apparent within other temporal understandings. In doing so, the meantime opens up important questions around the temporal limits of a clinical trial, the ways in which a trial can seep into daily life, participant identity, research ethics, and the responsibility of trialists around patient care.