Organized ambivalence: when sickle cell disease and stem cell research converge

Abstract

Objective. This article analyzes sickle cell patient families’ responses to stem cell transplant recruitment efforts. It identifies key dynamics that explain why sickle cell patient families are not undergoing stem cell transplants at the rate of other patient populations. It challenges the conventional focus on ‘African-American distrust’ as a set of attitudes grounded in collective memories of past abuses and projected on to current initiatives, by examining the sociality of distrust produced daily in the clinic and reinforced in broader politics of health investment. Design. It draws upon a two-year multi-sited ethnography of a US-based stem cell research and cures initiative. Fieldwork included participant observation in a state stem cell agency, a publicly-funded stem cell transplant program, a sickle cell clinic, and semi-structured, open-ended interviews with caregivers and stem cell research stakeholders, all of which were subject to qualitative analysis. Findings and implications. This paper finds ambivalence-in-action structured by three contextual strands: therapeutic uncertainties of the clinic, institutionalized conflation of healthcare and medical research, and political contests over scientific and medical investments. The paper posits that organized ambivalence is an analytic alternative to individualized notions of distrust and as a framework for implementing more participatory research initiatives that better account for the multiple uncertainties characteristic of regenerative medicine.