Channeling hope: An ethnographic study of how research encounters become meaningful for families suffering from genetic disease in Pakistan

Zainab Afshan Sheikh and Anja M.B. Jensen

Social Science & Medicine, 2019, vol. 228, issue C, 103-110

Abstract: The Pakistani population has become particularly interesting for international genetic research due to its high rates of consanguinity. Based on 5 months fieldwork in Faisalabad among Pakistani genetic researchers from December 2015–January 2016 and February–April 2017 and interviews with 36 families and 14 researchers, this article focuses on research encounters. It demonstrates how genetic research figures in the lives of families affected by genetic medical conditions in light of their everyday struggles with disease, and considers their perspectives on destiny and hope. Through examining the potentials of the research encounter, we ask how research becomes meaningful in the lives of Pakistani families affected by genetic disease: how these families and individuals enable different modes of sharing tragic stories, contemplating hope and contesting logics of consanguinity. International genetic research depends on human raw material. If we wish to understand the precarious lives this research relies on, then the everyday struggles with disease, and the perspectives of families must be methodologically and theoretically engaged.

Keywords: Pakistan; Ethnography; International genetic research; Research participation; Research encounters; Destiny; Hope; Suffering (search for similar items in EconPapers)
Date: 2019
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DOI: 10.1016/j.socscimed.2019.03.024

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