title: 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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Sociology and African American Studies, Boston University, 96-100 Cummington Street, Boston, MA 02215, USA. ruha@bu.edu
authors.forename: Ruha
authors.initials: R
authors.lastname: Benjamin
mesh_terms: D001741:Black or African American / Q000523:psychology*; D000755:Anemia, Sickle Cell / Q000208:ethnology* / Q000523:psychology / Q000628:therapy; D001290:Attitude / Q000208:ethnology; D005220:Fathers / Q000523:psychology; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation; D006801:Humans; D008297:Male; D009035:Mothers / Q000523:psychology; D015279:Organizational Culture; D010342:Patient Acceptance of Health Care / Q000208:ethnology* / Q000523:psychology; D011057:Politics; D045808:Refusal to Participate / Q000208:ethnology* / Q000523:psychology; D057905:Stem Cell Research; D035502:Trust