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Accepted Paper:
Paper short abstract:
Set against national economic crisis and sharp cuts to public health system’s budget, this paper explores the emergence of high-cost Next Generation genome sequencing as a valuable scientific enterprise in a Mexican public children’s hospital.
Paper long abstract:
In January of 2015, a public children's hospital in Mexico City became the first Mexican hospital to acquire a Next Generation genome sequencer for use in patient care. The acquisition of this sequencer, with the capacity to sequence a full human genome within 29 hours, represented a major step toward incorporating a molecular-level vision of the body into diagnostics and treatment. However, set against a national economic crisis and an overall 20% cut to this hospital's budget in 2015, the hospital's board of trustees' initial investment of US$250,000 for the sequencer and an additional US$130,000 budget for laboratory costs in the first year, stood out as a significant financial investment.
Drawing on nine-months of ethnographic fieldwork in this institution, this paper explores the diverse imaginaries that justified this investment and inflected the day-day-work of scientists trying to make genome sequencing clinically useful in this public hospital setting. Moving beyond a traditional bioethics framework, I describe a broader moral economy that emerged as these scientists contended with which patients to prioritize for sequencing, how much of their budget to use for research versus clinical ends, how to manage uncertainty in their analyses of clinical cases, and how best to argue that Seguro Popular (Mexico's most basic public insurance) cover genomic testing. Tracing high-cost genome sequencing's emergence as a valuable enterprise in this resource-constrained context deepens understanding of the implications of genomic medicine and its incumbent technologies outside of the world's wealthiest nations.
Situated Meanings of 'Good' Care and Science 'Worth Doing'
Session 1 Saturday 3 September, 2016, -