27 février 2018

The shifting lines of illness and health

In a paper published in “Medicine Anthropology Theory” Professor Aditya Bharadwaj shows how emerging biotechnological modalities that cultivate an idea of “cure as regeneration” dislocate expert knowledge, descriptions of disease, and its representation into contested new terrains. Interview with Professor Bharadwaj on “Cultivated Cure, Regenerated Affliction: Encounters with ALS and Stem Cell Regeneration in India”.

In this piece, you interrogate the notion of cure in order to address the idea of disease. What is your intention?

The notion of “cultivated cure” is a conceptual intervention to interrogate the notion of health. From institutionalised contexts, such as the WHO working definition of health, to deeply personal experiences, we often assume people inhabit healthy bodies that from time to time experience illness and disease. This simple assumption is embedded in culture-specific suppositions that view health as (1) the “natural”, default state, and (2) the quality of being that can be achieved through curative practices involving application of medical or lifestyle-related interventions that either keep us healthy or revert us back from a state of sickness to health.

My research on regenerative medicine, especially emerging therapeutic possibilities enmeshed in stem cell technologies, forces me to question this assumption. Health, I argue, is nothing but a state of dormancy and a cure merely tries to cultivate the normative state of dormancy. Health is a state of dormancy where illness is forgotten and paradoxically cultivated for further curative operations. We can liken health to a state of deep sleep in which illness is a bad dream. An affliction is then an awakening from a dormant state. In other words, illness and diseases rouse pathology to life, and life to a state of pathology. In this sense, a medically cultivated cure is a struggle to normalise pathology to a point of dormancy. We can visualise the notion of dormancy as the two faces of Janus: dormancy is both “health” and silent affliction. Curative operations seldom re-establish the normative health but instead merely “cure” pathology to the point of establishing a new normal. The notion of cure in this respect is also doubly articulate. It relieves or resolves an affliction – its cause, symptom, chronic manifestation – or it preserves or hardens (like cured food or substance) a state of pathology. In each instance a cured affliction is cultivated and prone to mutation. In the dormant state, moments when seemingly nothing happens, destinies of pathologies and their intended cures are relentlessly cultured and shaped. A state of dormancy, or “health” in this respect, is a mirage and one can argue that an affliction can “play its tricks” at the subterranean (tissue) level: (undetected) sickness can exist without a sick person.

You also conceptualise how “cure as regeneration” reanimates the figures of disease and medical knowledge. What do you mean by that?

In conventional biomedicine as well as in regenerative medicine involving human stem cells, regenerating the body from a state of pathology presents two paradoxical outcomes:

  1. As I’ve said above, curative operations try to restore and/or regenerate the afflicted body to a state of dormancy or health but this return to a state of “health” almost always departs from the (healthy) norm that the cure seeks to (re)establish.
  2. Cultivated cures regenerate health but also the structural conditions for the illnesses and diseases they seek to control, eliminate, and render dormant.

In this respect, I argue that a cultivated cure regenerates both a “new” state of health as well as “new” conditions for regenerating the affliction itself. This is most obvious in the case of chronic and progressive disorders but also in the realm of static or acute disorders where health as a desirable normative entity remains elusive.

You draw on “ethnographic data from a longitudinal project engaged in mapping stem cell technologies in India”. Can you elaborate on your methodology and on the production of such data?

My research methodology is multi-sited and ethnographic. That is to say, the subject matter or the “ethnographic object” is scattered in multiple domains and terrains of analysis and it is the task of the ethnographer to painstakingly collate and collect facets that further illuminate and sharpen the research. For over a decade and more recently as part of my ERC-supported consolidator grant, I have been examining the emergence of stem cell technologies within the scientific, clinical, ethical and regulatory landscapes in India. Over the years I have followed regulatory and policy developments, issues around governance and legislation, together with scientific research and therapeutic innovation in small-scale clinical facilities across India. The longitudinal immersion in the field and incremental building of data-led insights are crucial for qualitative research. I have been arguing for long that it is only through long, sustained and focused contact with the “field” that we come to know and uncover invaluable alternative readings of macroprocesses; and focusing on the innocuous everyday unfolding of these developments enables us to dissect the anatomy of old and emerging issues.

What are your main conclusions and recommendations?

First, to enjoy the very idea of health one must remain open, both at an individual and collective/policy level, to new emerging norms of health in new situations. In other words, if health exists, it can only exist as a dynamic, contingent and context sensitive experience.

Second, if health is “life lived in silence of the organs”, then this silence cannot be understood as the mere absence of disease but rather as a subcutaneous or peripheral stalking, one that eventually breaks the misleading silence. Rather ironically, afflictions remain present in their purported absence.

Third, regenerative medicine involving stem cells will re-author our relationship to health, illness and wellbeing. In this century, stem cells could emerge as a major therapeutic intervention that will help us control the rousing afflictions by waging regenerative battles against encroaching diseases. In the future, stem cells could cohabit with synthetic molecules and new generations of antibiotics to coproduce “health”, and in so doing temporarily eliminate diseases and regenerate residual damage. However, the ground cleared and cleaned by stem cell interpolations will also ironically offer fresh grounds for pathologies to take hold, thus precipitating further curative and regenerative operations.

Fourth, in the very near future public health delivery systems, especially those grappling with communicable diseases including drug-resistant conditions, could increasingly turn to stem cells to offer aggressive regeneration.

Fifth, we need to urgently address policy thinking that separates biotechnological interventions from global health concerns. Approaches that seek to detach high-end biotech interventions from public health delivery are no longer fit for purpose.

Lastly, as my project in India shows, seemingly high-end biotechnologies can be made accessible. These emerging insights bode well for making a strong case for promoting a 21st-century global health manifesto that seeks to democratise access to biomedical innovation.

What is the next step of your research?

Future research will seek to actively engage the stakeholders shaping the policy landscape in India and the European Union. In particular I would like to better understand the real and imagined barriers to absorbing stem cell technologies in the global health therapeutic framework. The national regulatory and scientific cultures are offering uneven opportunities for realising the therapeutic value of this developing science. My existing research has uncovered a global traffic of patients building up around stem cell treatments in India, which shows that in a global research system people will travel in pursuit of health and new biomedical technologies. In large part my future research will continue to grapple with a simple but complicated question: what do we mean by health?

Full citation of Professor Bharadwaj’s article:
Bharadwaj, Aditya. “Cultivated Cure, Regenerated Affliction: Encounters with ALS and Stem Cell Regeneration in India.” Medicine Anthropology Theory 4, no. 3 (2017), Special Section: On Affliction, 143–152. doi:10.17157/mat.4.3.476.