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

Authors: Prasanna Patra and Margaret Sleeboom-Faulkner

Abstract:

Many stem cell therapies, even though largely unproven, are widely viewed as  promising to global healthcare provision. India is a leading proponent of the practice  of making this therapy available as a last resort to patients from around the world, who are prepared to risk their remaining health and financial resources in exchange for hope. Stem cell therapy service centers, labeled as ‘rogue’ or ‘maverick’ by some, are vigorously promoting such therapies as ‘safe’ modes of treatment in the guise of ‘experimental’ therapy. This has been carried on in India even since its promulgation of the Guidelines for Stem Cell Research and Therapy in 2007. This article is based on a multi-site ethnographic study carried out at several locations in India between September and December 2008. It raises two questions: why the use of unproven therapies is becoming common practice in jurisdictions in which regulatory apparatus is in place; and, how these service providers are succeeding in sustaining and proliferating such therapeutic practices. By employing the concept of bionetworking, we have tried to describe the gap between regulation and implementation. This article divides service providers into three categories – public sector, private sector and individual practitioner – on the basis of their institutional embeddedness. It explores how service providers are able to exploit the gray areas of regulatory systems to their own entrepreneurial ends. The article highlights how local actors engaged in stem cell therapy draw on international norms of bioethics but adopt them according to various underlying rationales, shaped by local patterns of governance, institutional development and policy-making.