Speaking for stem cells: Biomedical activism and emerging forms of patienthood

Abstract

Purpose – Recent research on the modes of patient activism has displaced older notions of patients as passive, compliant subjects of biomedical power. This chapter expands analyses of patient activism to examine the intersections between the processes of identity formation, the emergence of a new scientific field (human stem cell research), and political institutions.

Methodology – This chapter uses in-depth interviews, ethnographic techniques, and textual analyses to collect data regarding California's 2004 ballot initiative, Proposition 71, The California Stem Cell Research and Cures Act. Data were analyzed using a situational analysis approach. Situational analysis is a variant of grounded theory that organizes data in the form of maps of connections between actors and social worlds.

Findings – This chapter examines the content and significance of this event through the construction of a collective identity among supporters of Proposition 71, what I call “stem cell activists.” The construction of this collective identity serves as an important ground from which individuals and groups carve out political claims of self-representation. Stem cell activists also helped pass a controversial initiative through the efforts in publicly supporting Prop 71 and human stem cell research.

Research limitations – This research is limited in that it only examined individuals who became stem cell activists, and not individuals from whom this identity failed to gain salience. More research is needed to understand the conditions under which this identity becomes incorporated within a person's political repertoire.

Value of chapter – This chapter brings together theoretical perspectives on the symbolic aspects of identity construction and the political economy of biomedical science. This chapter will be of interest to scholars in medical sociology, science and technology studies, and social movement researchers.

Citation

Ganchoff, C. (2008), "Speaking for stem cells: Biomedical activism and emerging forms of patienthood", Chambré, S.M. and Goldner, M. (Ed.) Patients, Consumers and Civil Society (Advances in Medical Sociology, Vol. 10), Emerald Group Publishing Limited, Leeds, pp. 225-245. https://doi.org/10.1016/S1057-6290(08)10011-0