Stem Cell Treatments in India: An Ethnography of Regular Practice

ABSTRACT

In this article I explore how experimental stem cell treatments have become a therapeutic choice in India. Drawing on ethnographic fieldwork, I illustrate six sociotechnical pathways by which clinically unproven treatment is rendered regular health care practice for consumers and providers across the country. Through each pathway, based on the themes of bioconsumption, integration, consumer contacts, treatment experience and rituals, and political culture, I demonstrate how the experimental status of stem cell treatment is undermined and thereby experienced by key stakeholders as just another medical option. In analyzing the pathways, I argue that unproven stem cell treatment practices are promoted and sustained by multiple social, political and technical forces. The discussion on pathways is therefore situated within a conceptual framework of “normalization,” derived from studies that investigate the multidimensional aspects to controversial and/or new medical technologies becoming routine.

KEYWORDS:

• India
• biomedical technologies
• health care consumers
• normalization
• sociotechnical
• stem cells

Acknowledgments

I thank the study’s respondents for their participation in my research and I am especially grateful to those who shared their difficult stories with me. For ethical reasons, primary data sources are kept confidential. I am thankful for the detailed and constructive feedback of the anonymous reviewers and the comments and advice of Medical Anthropology’s editor Lenore Manderson, which proved invaluable input to the final version of this article. I am grateful to Srirupa Roy for her inputs in earlier drafts and to Farhana Ibrahim for her comments. A special thank you to Mohan Rao, Sarah Hodges, and Ramila Bisht.

Notes

1. The term middle-class, drawn from Fernandes (2006), implies a broad socio-economic category with the study’s respondents having varied access to financial, social and cultural capital.

2. Other known sources of stem cells were allogenic (another’s) bone marrow, hESCs, UBC, and in one instance fetal or placenta stem cells were used. Not all consumers were aware of the type of stem cells used in their treatments.

3. Despite consumer protection laws in India, doctors are rarely prosecuted for misconduct. According to the National Board of Hospitals and Healthcare Providers, in 2014, of the 98,000 patients who die annually due to medical errors, only 20–27% approached the courts, with just three cases being compensated since 2010 (Nagarajan 2018).

4. Government of India data on public investment specifically for stem cell research is not available in the public domain. According to the Association of Biotechnology Led Enterprises (ABLE) of India, the country’s biotechnology industry is expected to be valued at US $ 100 billion by 2025 (ABLE 2012).

Additional information

Funding

There is no external funding for my article, which was based on PhD research at the Centre of Social Medicine & Community Health, Jawaharlal Nehru University, New Delhi, India.

Notes on contributors

Rohini Kandhari

Rohini Kandhari is a public health researcher based in New Delhi, India. Her current research interest lies in examining the integration of new biomedical technologies within everyday middle-class life in India’s secondary towns and cities.