Ethic of consensibility, subaltern ethicality: The clinical application of embryonic stem cells in India
- 44 Downloads
The article interrogates clinical and subjective patient experiences outside the institutionalized conditions of scientific communication. Drawing on the notion of consensibility – consensual and circumscribed rules of scientific engagement – the article re-imagines ethicality on the margins of an ethic of consensibility as inherently subaltern. The article is based on a multi-sited ethnography focused on a small clinical facility in India offering human embryonic stem cell (hESC) therapies for a spectrum of disorders to local and global patients. The emergence of subaltern ethicality, the article argues, is intimately linked to ‘somatic ethics’ in the event that a somatic ethical stance is operationalized outside the consensible space of science. The article draws on interview material with the clinical director and therapeutic experiences of patients from Germany, United States and Australia undergoing hESC therapy for chronic spinal cord injuries and lyme disease. In so doing, the article shows how subaltern ethicality is an ironic, critical stance pitted against demands for (bio)scientific and (bio)ethical consensibility while seeking to become incorporated and normalized within its folds.
Keywordsstem cells India consensibility subaltern ethics
I wish to thank the anonymous referees for their extremely generous, detailed and valuable comments. I am grateful to the special issue editors for their editorial input and for keeping me within the word limit. Last but not the least, I remain indebted to the research participants who so openly and unconditionally shared their everyday experiences and struggles.
- Beauchamp, T.L. and Childress, J.F. (1994) Principles of Biomedical Ethics. New York: Oxford University Press.Google Scholar
- Bharadwaj, A. (2005) Cultures of embryonic stem cell research in India. In: W. Bender, C. Hauskeller and A. Manzei (eds.) Crossing Borders: Cultural, Religious and Political Differences Concerning Stem Cell Research. Munster, Germany: Agenda Verlag, pp. 325–342.Google Scholar
- Bharadwaj, A. (2008) Biosociality to bio-crossings: Encounters with assisted conception and embryonic stem cells in India. In: S. Gibbon and C. Novas (eds.) Genetics, Biosociality and the Social Sciences: Making Biologies and Identities. London: Routledge, pp. 98–116.Google Scholar
- Bharadwaj, A. (2009) Assisted life: The neoliberal moral economy of embryonic stem cells in India. In: D. Birenbaum-Carmeli and M.C. Inhorn (eds.) Assisting Reproduction, Testing Genes: Global Encounters with new Biotechnologies. New York: Berghahn Books, pp. 239–257.Google Scholar
- Bharadwaj, A. and Glasner, P. (2009) Local Cells, Global Science: The Rise of Embryonic Stem Cell Research in India. London: Routledge.Google Scholar
- Cohen, L. (2003) Operability. In: V. Das and D. Poole (eds.) Anthropology in the Margins of the State. Santa Fe, NM: American Research Press, pp. 165–190.Google Scholar
- Cohen, L. (2010) Ethical publicity: On transplant victims, wounded communities, and the moral demands of dreaming. In: A Pandian and D. Ali (eds.) Ethical Life in South Asia, Bloomington Indianápolis, IN: Indiana University Press, pp. 253–274.Google Scholar
- Das, V. (2012) Ordinary ethics: The perils and pleasures of everyday life, http://johnshopkins.academia.edu/VeenaDas/Papers/1742853/Das_Ordinary_Ethics, accessed 1 August 2012.
- Epstein, S. (1996) Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley, CA: University of California Press.Google Scholar
- Ertelt, S. (2011) Scientists say first human embryonic stem cell research trial has problems, http://www.lifenews.com/2009/01/29/bio-2719/, accessed 30 May 2011.
- Farmer, P. (1993) AIDS and Accusation: Haiti and the Geography of Blame. Berkeley, CA: University of California Press.Google Scholar
- Fox, R.C. (1999) Is medical education asking too much of bioethics? Daedalus 128 (4): 1–25.Google Scholar
- Franklin, S. (2003) Ethical biocapital: New strategies of cell culture. In: S. Franklin and M. Lock. (eds.) Remaking Life and Death: Towards an Anthropology of the Biosciences. Santa Fe, NM: School of American Research Press.Google Scholar
- Good, B.J. (1997) Medicine, Rationality and Experience: An Anthropological Perspective. Cambridge, UK: Cambridge University Press.Google Scholar
- ICMR. (2000) Ethical Guidelines for Biomedical Research on Human Subjects. New Delhi, India: Indian Council for Medical Research.Google Scholar
- ICMR. (2006) ICMR-DBT Guidelines for Stem Cell Research and Therapy. New Delhi, India: Indian Council of Medical Research and Department of Biotechnology.Google Scholar
- Kock, L.D. (1992) Interview with Gayatri Chakravorty Spivak: New nation writers conference in South Africa. A Review of International English Literature 23 (3): 29–47.Google Scholar
- Laqueur, T. (1990) Making Sex: Body and Gender from the Greeks to Freud. Cambridge, MA: Harvard University Press.Google Scholar
- LifeSiteNews.com. (2001) India Forges Ahead with Embryo Stem Cell Research, http://www.lifesite.net, accessed 2 November 2012.
- Lock, M. and Nguyen, V. (2010) An Anthropology of Biomedicine. Chichester, UK: Wiley-Blackwell.Google Scholar
- Martin, E. (1987) The Woman in the Body: A Cultural Analysis of Reproduction. Boston, MA: Beacon Press.Google Scholar
- Merchant, C. (1983) The Death of Nature: Women, Ecology and the Scientific Revolution. San Francisco, CA: Harper and Row.Google Scholar
- Morgan, L. (2003) Embryo tales. In: S. Franklin and M. Lock (eds.) Rethinking Life and Death: Towards an Anthropology of the Biosciences. Santa Fe, NM: School of American Research Press, pp. 261–292.Google Scholar
- Oudshoorn, N. (1999) The decline of the one-size-fits-all paradigm, or, how reproductive scientists try to cope with postmodernity. In: D. MacKenzie and J. Wajcman (eds.) The Social Shaping of Technology, 2nd edn Philadelphia, PA: Open University Press.Google Scholar
- Rose, N. (2006) The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton, NJ: Princeton University Press.Google Scholar
- Rothman, B.K. (1982) In Labor: Women and Power in the Birthplace. New York: Norton.Google Scholar
- Shapin, S. and Schaffer, S. (1989) Leviathan and the Air-Pump: Hobbes, Boyle and the Experimental Life. Princeton, NJ: Princeton University Press.Google Scholar
- Sharp, J.P. (2009) Geographies of Postcolonialism: Spaces of Power and Representation. London: Sage.Google Scholar
- Sky News. (2006) Stem cells: Mystery of ‘Miracle Cures’. 23 January.Google Scholar
- Sky News. (2007) Woman's stem cell miracle cure claim. 13 April.Google Scholar
- Spivak, G.C. (1993) Can the subaltern speak? In: P. Williams and L. Chrisman (eds.) Colonial Discourse and Post-Colonial Theory. Cambridge: Harvester Wheatsheaf, pp. 66–111.Google Scholar
- Spivak, G.C. (1999) A Critique of Postcolonial Reason: Towards a History of the Vanishing Present. Cambridge, MA: Harvard University Press.Google Scholar
- Sunder Rajan, K. (2008) Biocapital as an emergent form of life: Speculations on the figure of the experimental subject. In: S. Gibbon and C. Novas (eds.) Genetics, Biosociality and the Social Sciences: Making Biologies and Identities. London: Routledge, pp. 157–187.Google Scholar
- Telegraph. (2007) Delhi stem cell jabs ‘help woman walk again’. 14 April, http://www.telegraph.co.uk/news/worldnews/1548589/Delhi-stem-cell-jabs-help-woman-walk-again.html.
- Telegraph. (2008) Australian man ‘recovers’ after stem cell treatment. 27 May, http://www.telegraph.co.uk/news/worldnews/australiaandthepacific/australia/2036414/Australian-man-recovers-after-stem-cell-treatment.html.
- The Guardian. (2005) Row over doctors ‘miracle cures’. 18 November, http://www.guardian.co.uk/science/2005/nov/18/stemcells.controversiesinscience, 1 August 2012.
- Guha, R. (ed.) (1982) On some aspects of the historiography of colonial India. Subaltern Studies no. 1: Writing on South Asian History and Society. Delhi, India: Oxford University Press, pp. 37–44.Google Scholar
- Ziman, J. (1996) Reliable Knowledge: an Exploration of the Grounds for Belief in Science. Cambridge, UK: Cambridge University Press.Google Scholar