Recruiter-patients as ambiguous symbols of health: bionetworking and stem cell therapy in India

Bionetworking and Strategic Linking between India and Japan: How Clinical Stem Cell Intervention Continues despite New Regulatory Guidelines

“…The guidelines did have some influence over government-funded hospitals (e.g. AIIMS, New Delhi) as adherence to guidelines was linked to funding from the central ministries (Tiwari & Raman 2014, Tiwari & Desai 2011, Patra & Sleeboom-Faulkner 2011. However, guidelines had little impact on private clinics, hospitals and companies, which constituted a large part of stem cell related activities in India.…”

“…Reports about the availability of unrecognized stem cell intervention at increasing numbers of private clinics, hospitals and companies surfaced in media reports, internet blogs, science magazines and medical ethics journals (Kahn 2007;Pandya 2008;Salter 2008;Bharadwaj and Glasner 2009;Khullar 2009;Patra & SleeboomFaulkner 2009;Cohen and Cohen 2010;Dhar 2010;Jain 2010). Some critics argued that the 2007 guidelines lacked legislative force (Pandya 2008, Patra & Sleeboom-Faulkner 2011, Tiwari and Raman 2014.…”

“…As the discussion above indicates, social science literature has tiered to explain why unrecognized stem cell interventions (USCI) are provided in India since guidelines were put in place in 2007, and some do this in relation to the existence of a bioethical or governance vacuum (Salter 2008;Sleeboom-Faulkner 2010;Cohen &Cohen 2010), institutional embedding (Patra & Sleeboom-Faulkner 2011) and jurisdictional ambiguity (Tiwari & Raman 2014), whileothers highlight making profit, acquiring glory, advancing experimental medicine (Kiatpongsan & Sipp, 2008), and 'filling the gap' between demand for health-care and supply of treatment. While understanding why provision is continued, it is important that social scientists examine how stem cell intervention activities continue to be carried out in India.…”

Motivations for seeking experimental treatment in Japan

“…The uncertainty around experimental biomedical technologies has led to various debates, whereby some encourage the swift development of the field of regenerative medicine and urge their accelerated application to cure patients; others, however, have described this haste as 'hyping' in terms of the 'politics of hope' (Brown and Michael, 2004;Novas, 2006;Hyun, 2013;Petersen et al, 2017), arguing instead for a 'responsible' and 'ethical' approach based on scientific evidence (Bianco and Sipp, 2014;McMahon and Thorsteinsdó ttir, 2010;Ogbogu et al, 2013). Although interviews have been held with patients seeking stem cell treatment (Song, 2017;Patra and Sleeboom-Faulkner 2011;Sui and Sleeboom-Faulkner, 2015;Bharadwaj;Chen and Gottweis, 2013;Salter et al, 2015), the debates, however, have not been based on the diversity of views among people with various diseases and disabilities.…”

“…Patients express a great diversity of reasons for undergoing regenerative medical interventions, varying from 'last resort' and 'improving the quality of life' to following examples ('others have done it') and calculation ('I can afford it'; 'I stand a good chance'), while motivations varied from spiritual (hope, prayer, pilgrimage) and altruistic (I do it for my family; perhaps other patients can benefit) (cf Song, 2010;Patra and Sleeboom-Faulkner 2011;Sui and Sleeboom-Faulkner, 2015;Bharadwaj, 2013;Sakai, 2014). Here, we try to deepen our understanding of decisionmaking on seeking treatment by examining how aims are set and motivations are forged in relation to people's particular condition.…”