title: Biogovernance Beyond the State: The Shaping of Stem Cell Therapy by Patient Organizations in India.
abstract: Public engagement through government-sponsored "public consultations" in biomedical innovation, specifically stem cell research and therapy, has been relatively limited in India. However, patient groups are drawing upon collaborations with medical practitioners to gain leverage in promoting biomedical research and the conditions under which patients can access experimental treatments. Based on qualitative fieldwork conducted between 2012 and 2015, I examine the ways in which two patient groups engaged with debates around how experimental stem cell therapy should be regulated, given the current lack of legally binding research guidelines. Such processes of engagement can be seen as an alternative form of biomedical governance which responds to the priorities and exigencies of Indian patients, contrasting with the current measures taken by the Indian state which, instead, are primarily directed at the global scientific and corporate world.
authors.affiliation: a Department of Anthropology , University of Sussex , Falmer , Brighton , UK.
authors.forename: Carolyn
authors.initials: C
authors.lastname: Heitmeyer
mesh_terms: D060432:Anthropology, Medical; D035843:Biomedical Research / Q000458:organization & administration*; D006801:Humans; D007194:India / Q000208:ethnology; D010361:Patients; D033581:Stem Cell Transplantation / Q000208:ethnology*
keywords: Activism; biomedicine; governance; patient organizations; stem cells