Organized Ambivalence: when Sickle Cell Disease and Stem Cell Research Converge

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.