Bionetworking: between guidelines and practice in stem cell therapy enterprise in India

Many stem cell therapies, even though largely unproven, are widely viewed as a promising to global healthcare provision. India is a leading locale that makes this therapy available as a last resort to patients from around the world, risking their remaining health and financial resources in exchange for hope. Stem cell therapy service providing centres labelled as ‘rogue’ or ‘maverick’ by some, are vigorously promoting such therapies as ‘safe’ modes of treatment in the guise of ‘experimental’ therapy. This also happens in India after its promulgation of the Guidelines for Stem Cell Research and Therapy in 2007. This article is based on a multi-site ethnographic study that was carried out at several locations in India between September and December 2008. It raises two questions: why such unproven therapies are becoming common practice in locations where the regulatory apparatus is in place; and, how these service providers are successful in sustaining and proliferating the therapeutic practices. By employing the concept of bionetworking, we have tried to describe the gap between regulation and implementation. This article groups service providers into three categories; public sector, private sector and individual practitioner, based on their institutional embedding. It explores how service providers exploit gray areas in regulation for their entrepreneurial endings. The article highlights how local actors engaged in stem cell therapy draw on international norms of bioethics but adopt them according to various underlying rationalities, shaped by local patterns of governance, institutional development and policy-making.