Abin Thomas is a PhD candidate at the India Institute, King’s College London. His research is an anthropological analysis of the development of the organ donation and transplantation movement in India, with a focus on Kerala, a southern state. Abin’s research interests include anthropological approaches to organ exchange, medicine and the management of life, public health and biopolitics, the theories of gift and altruism, and religion and political thought.
Hello, I am Nigel. Joining me today is Abin Thomas, a P.hD candidate in the department of Global Health and Social Medicine at King’s College, London. The topic we are going to focus onis organ donation and transplantation. So Abin, I know you have done research in very specific part of India, Kerala. Why did you choose that particular location?
When I was joining King’s for my Ph.D. I haven’t discussed my current Ph.D proposal asit stands in terms of organ donation and transplantation. I was working on legal debates oneuthanasia and suicide. But coincidently I found out that there was a movement happening in Kerala, in the field of organ donation and transplantation and I got interested by reading lot literature around it, and I thought that would be a more interesting subject to work on. And I pursued my interest, and this is where I am right now after a year of Ph.D. field work.
There have been a number of scandals that emerge from India where people are being coerced into donating organs and I am sure that must affect how people feel about organ donation?
I think this is the point what gotme interested in this kind ofresearch. Because whenever I was inmy field and when I talked about my research, people were always sceptical about the project. Because there isof course this understanding that the possibility of organ trade; that is one of the feared elements of this particular phenomenon or the movement. But recently, in late 2000, I think a couple of popular initiatives and NGO activities, and a couple of high profile kidney donation actually helped to transform that particular earlier background to a new context and actually it helped to make people aware that...okay, if there is something else going on and you can actually save a life. Though, it’s more about voluntary donations and cadaveric donations, itis not about money these days. Though there are cases that are happening rarely, but I think it’s more about celebrating humanity, giving life, saving life etc etc.
So this high profile donors gave their organs out of purely altruistic motives?
Yeah, one woman, her name is Uma Preman. She donated her kidney to a stranger in 1999, and after ten years in 2009 a catholic priest called Fr. Devis Chiramel donated his kidney to a stranger and that became a news in the media and national media for one reason where a catholic priest donating kidney to a Hindu man. And that particular boundary transgressing aspect...that aspect became more popular and people try to look into organ donation as a more noble activity. In 2011, another successful industrialist Kochouseph Chittilappilly, he donated his kidney to a truck driver and it was much more celebrated act of humanitarianism I think. Because, successful industrialist who can afford anything... That donation actually struck inthe minds of the people and it became more popular. I just read his biography. He says that “I got richer at heart when I donated my kidney”. So this particular positive way of promoting organ donation by high profile people, I think high profile donors, made it more popular along with the far advanced health infrastructure that Kerala has gotat the moment, compared to other states, especially in India. In 2010 and in 2012, Fr. Chiramel started two charity walks to promote organ donation and transplantation. And he travelled from north and to south of Kerala for two months. Soalong with these social and community based approaches, we have seen government setting up Kerala Network for Organ Sharing in 2012. On the one hand there is social awareness that is going on and on the other hand a legal and formal state structure that actually make use of the social context. Everything comes into picture in 2012 and the stage is set for a prefect start in the same year, also there were a couple of movies. One of the popular movie called “Traffic” actually portrayed a real-life incident in Chennai to talk about how difficult and how exciting itistotalk about topic like organ transplantation and getting organ from a brain donor in demanding circumstances. I think it has got into different layers of social conciseness, political, social, community and even the mental courage of the people to talk about death. So people don’t find any kind of social taboo associated with itin public discussions.
It’s interesting, particularly those high profile cases of people making altruistic donations, how they have become the catalysts, that allow such a radical change of thought. Because we are talking about situation presumably where there were some people strong religious arguments against donation.
I think in every religion there are people with mixed approach to the idea of organ donation. Many of them actually see this as a medical miracle, that’s for sure. But at the same time, this apprehension towards the idea of organ donation comes from, I think the belief of karma or the belief about integrity of the body, the belief about after life etc etc. And I think to some extend the donation that was happening across religions actually helped people to think about humanist secular way of organ exchange which is very important. So the cultural and religious aspect becoming more irrelevant, I think. Ok. Some people who even believe that our body is given by God, they are actually in favour saving a life. You know they are not worried about what happens to the body after death. So I think there is much more open mind approach to organ donation at the moment.
How do you go about research in a topic like because there are so many different elements at apply and howdo you understand what’s happening?
As part ofmy research field work, I stayed in a village inKerala and I followed a couple of NGOs who actually promote organ donation and transplant fund raising. Other than that I spoke to a couple of transplant surgeons, transplant coordinators and organ donors, recipients and their family members. Also, I talked to normal human beings like who are not even aware of the word Brain Death. But what I found interesting was their resistance towards the idea of the category ofbrain death was not that much, you know, as I feared. Because in the case of Japan itis a big issue, so I think Kerala isin a better position tomove forward along with its high successful rate of health performance.
So you talked to people involved both as donors and also as recipients?
I tried to balance between the view points from both sides. Some of the studies don’t look at the recipients or even the post-transplant life.
So far, it sounds like a positive story. There is a sense in which through the noble actions of several high profile people, a community, whole region of India seems tobe positively oriented toward organ transplant.
I think it did not happen over a night because there were things happening in early 2000. For example, the state of the art health facility is actually one of the reason and in Kerala itis like a semi-urban community or a semi-urban society where you can access state ofthe art health care system across Kerala. And I think itis very important to look at the history more important because it just did not start in 2010 or 2011. So many people started working before that. In 1995 Kerala adopted the law “THOA”, the transplantation act, then in 2000 there was an organization in Cochin to promote cadaveric donations. Then a couple of multi organ transplants happened in Cochin, in Trivandrum then in Kottayam. Soat the moment, I think there isno distinction between private and public delivery of health care. So hospitals can also afford todoan expensive organ transplantation in Kerala. So I think itisa network of things that enabled this positive story. Even if there are grey areas and there are concerns, there are critical issues involved inthis that I am aware of. So I think itis better to talk about the positive aspects at the moment.
What’s it that you are trying todo with your research?
It’s my hope and itismy belief that it will contribute to a kind of policy debates or a kind of insight to help government formulate a much more feasible and accessible organ transfer system that will help people to donate and promote organ donation and receive organs without any kind of delay. And I think it has to do with the bureaucratic structures, and their ways in which governance is maintained and also the ways in which people see and perceive the idea of organ donation and brain death. So I hope it will lead to a kind of transformation of the current scenario.
In the UK there has been a change of policy and we move to a situation where people have to pledge, actively pledge their organs after death now that is a default position which assume you will be and you have to make an effort not toasit were. I wanted to know any kind ofanalysis going onin India?
In India we have to catch with that once developed countries in a various sense, I think. Because we don’t have a national registry of organ donation and transplantation in place at the moment. So there are a lot of medical infrastructure to come in place in the first hand. But in terms of donation and who can donate, I think people have topledge their organ before they are going to die. Soif you are willing tobean organ donor you need to pledge your organ and someone should know from the family that okay he willingly signed a form which iscalled “organ pledge form”. I think the key isto make all those decision possible in actual terms rather than pledging your organs. I think that isthe key and that is very important.
Are there particular types of people who might read your work and impose different ways of doing things?
The people associated with the Kerala organ network sharing programme, this is called “Mrithasanjeevani”in Malayalam. Sothey are pretty much interested and most of the two NGOs that I worked with, they are interested inmy work and also there’s an organization for organ donors which is called organ donor association who actually donate their organ altruistically. I think these stake holders actually canlearn from my research and in dialog with the research, I think they canbe the agents for change.
Abin Thomas, thank you very much.