In your own way

Dilemmas of Organ Transplantation in Global South: Critical Reflections and Contributions of Medical Anthropology Studies

Emre Yuksek*

Abstract

Organ donation and transplantation as a method of medical treatment is a controversial public health policy. In this article, I focus on the political economy of transplant tourism and organ trafficking as it intersects with the views and positionality of multiple actors, and argue that an anthropological perspective can help to identify and to reframe racial and regional disparities inherent in these flows.

Introduction

Organ donation and transplantation is a controversial public health (PH) issue. As treatment options have expanded and diffused to the developing world since the late 1980s, including in the form of organ trafficking, the medical interpretation of needs, and the significance of altruism to the process, have changed. PH policy sees organ transplantation as a means of improving health conditions of chronically ill patients worldwide through a successful biomedical intervention. However, the “success story of transplantation”, as portrayed by Western biomedical practice, is problematic and has provoked questions from medical anthropology (MA) around the power relations in “transplant tourism” and “organ trafficking” between the Global North and South and within the Global South. In this paper, I focus on the political economy of transplant tourism and organ trafficking as it intersects with the views and positionality of multiple actors: the medical transplant community which influences PH institutions, pharmaceutical companies that advertise and benefit, needy patients seeking a “gift of life” at any cost, and vulnerable donors who offer their body parts.

Drawing on an analysis of both PH and MA literature, this paper is structured in three parts. The first section offers a brief review of relationships between PH and kidney transplantation from living donors. The second section present current debates in critical MA. The third section presents examples from research with living donors in India, Pakistan, Bangladesh, Moldova and Turkey, highlighting the interplay between the commodification of human body parts, poverty and inequality. I argue that an anthropological perspective can help to identify and to reframe racial and regional disparities inherent in these flows.

Birth of Organ Transplantation as a Public Health issue

World Health Organisation’s (WHO) efforts to raise awareness of the chronic kidney (renal) disease has represented a significant shift towards its recognition as a worldwide PH problem, perpetuated by an ageing population with bad nutrition habits (Nahas and Bello, 2005:332) . Both in the developed and developing the world, the increase of fatal renal diseases follow the prevalence of diabetes, obesity, and hypertension (Nahas and Bello, 2005:333). Medical efforts for the prevention and early diagnosis of chronic kidney diseases are not enough, and growing numbers of patients seek regular dialysis treatment which only partially rehabilitates patients in a costly and inefficient process (Barsoum, 2006:998).However, the growing popularity of this treatment, born in a Western biomedical and cultural context, has led to unintended consequences of illicit flows and unjust state practices in the Global South amidst processes of medical globalisation. There is a wide gap between beneficiaries of the treatment around the world. Europe and North America have higher transplant prevalence than other regions, with a considerable improvement in survival rates thanks to new medicines and medical techniques. This lop-sided development has negative implications in low-income countries. Transplants are often not offered as an option for the poor, creating imbalances for organ procurement (Schieppati and Remuzzi, 2005:9).

The high costs and poor outcomes can pose a significant PH challenge. The most important PH goals include raising awareness and achieving cooperation between health ministries, private organisations and the public for the promoting donation and international procurement strategies that can expand the available kidney transplantations (Levey et.al, 2007:176). Kidney transplantations are recommended either from a living donor or a cadaver (Swazey and Fox, 1992). Where the health systems fail to increase donors or have strict regulations for waiting lists, there has been a rise of “free organ markets”. This refers to patients seeking new ways to get their treatment abroad, and has further led to organ trafficking with improvements in medical technology (Constantinou, 2012).

Problematically, PH institutions usually share information only about kidney donation and success stories of the biomedical industry, not on the side effects, risks and global implications in the South (Scheper-Hughes, 2003). The WHO advocates for a global legal framework for organ processing and transplantation, taking into consideration socioeconomic and political factors playing a role in the global flows of organ transfers, to combat any kind of trade in human body parts by ensuring quality treatment to patients in all countries within a framework of equity and equality (White et.al, 2015). Critical studies of medical anthropologists have helped to raise attention, leading to the establishment of Organ Watch, Bellagio Task Force and finally Istanbul Declaration for Organ Trafficking and Organ Tourism (2008) as a result of meticulous research on the subject (Scheper-Hughes,1990, 2004, 2011; and Cohen:1999).The ethnographies and studies of MA scholars expose the different approaches as we see below.

Critical Medical Anthropology Public Health and Organ Transplantation

Scholars cite new forms of anthropology in the post-modern based on activism and advocacy (Gardner and Lewis, 2015:72). In  the  case  of  organ  transplantation, critical MA  develops  an  alternative  lens  to  the  problem  of  organ  trafficking,  different  to bio-medically  and  ethnocentrically  defined  medical  ethics  and PH  applications. Most of the literature reviewed here are gives examples of critical MA that questions rising organ trafficking networks and points to the inadequacy of existingPH approaches. MA ethnographies expose what PH neglects on the power relations and flows between the roles of needy patients, transplant medicals, criminal networks and organ vendors. MA helps understand the social and cultural context of disease to inform intervention programs in a development context, taking into consideration inherent inequalities, while also turning the lens on biomedicine itself as an object of study (Baer, 1990:1012-13).

I limit examples of living donors in the kidney market. Organ transplantation, of course, covers other body parts, as well as donations from deceased donors. Cadaveric transplants open a whole other debate around interpretations of death across cultures. For example, China created a market for countries such as Japan which did not develop donation  networks of their own due to the rejection of the idea of brain death (Ohnuki-Tierney,1994), resulting in speeded executions of convicted prisoners for meeting the “demand” (Cohen, 2011). Also, rumours about stolen organs of prisoners during the “dirty war” years in Brazil and Argentina, and from convicted Palestinians in Israel (Scheper-Hughes,2004; Campion-Vincent and  Scheper-Hughes, 2001) open questions on the role of the state in these illicit flows.Critical MA literature covers these wide perspectives on the complex social and political dynamics of the transplant market in a way that was neglected before.Scheper-Hughes‘s compares colonial social anthropology and the role of clinical MAtoday and highlights the point that medical anthropologists  should  re-examine  biomedicine  objectively  and  distance  themselves  from  this western perspective(Scheper-Hughes, 1990:192).

MA  can  contribute  to  PH  policy  by  using  a  multidimensional approach to refocus on underlying causes of emerging  problems.  As  another  methodology  used  to  inform  PH  has a limited  sight  on observing  culture  in  its  rightful  context,   MA    allows  us  to  see  how  results  might  be influenced by the background of the individuals interpreting them, or by the social context in which the diseases and treatments  occur. Also, MA  builds  an  independent  domain  to  critique  biomedical  aims  and  to  question hegemonic  relations, challenging  the  interpretations  of western biomedicine, where the basic assumption is that every explanation goes back to biology or “science”(Campbell, 2011:78). The methodology discourages artificial categorisation and gives a better understanding of the worldviews of subjects who would normally be omitted from generalised, statistical models (Campbell, 2011:79).

In our case of organ transplantation,  critical  MA  portrays  side-effects  in  different  cultural  and  social  contexts, how people  and  communities  are  used  and  exploited, and how global  interconnectedness  in  the  context  of  a  capitalist  world  economy influences individuals’ pursuit of health. Behind  the  depoliticized  approach  of  PH,  critical  MA  promotes  activism  and  advocacy  to  strengthen  silenced  communities  and  questions  the responsibility of health institutions. As Winkelman points out, redefining biomedicine as “capitalist medicine”shows that biomedicine does not exist outside the system, but is a powerful economic and political tool that reinforces a capitalist structure (Winkelman 2009:296). This is what critical MA exposes and contributes to a more holistic understanding of PH as I portray through different cases below.

The Reality of Organ Transplantations from Living Donors: issues and case studies

The improvements in transplant technology and the effects of globalisation have allowed patients from the developed world to seek scarce organs in less-developed countries (Scheper-Hughes, 2004). Consequently, there is a divide between “organ-donor” and “organ-recipient” nations (Scheper-Hughes, 2004:36).  Usually, the donations come from the poor, medically illiterate living on the social margins. These donors represent socially and politically silenced communities, their hopes and vulnerabilities exploited under pressures of the global market (Scheper-Hughes, 2004:43).Medical anthropologists seek to uncover these poverty and inequality dynamics and to explain how they influence the practice of transplantation, offering insight into understanding the social realities behind the processes (MacClancy, 2002:12).

The increased access to the developing world as a source of organs has given rise to the phenomenon of “transplant tourism”. “Transplant tourism” is a type of organ trade, where the recipients travel abroad to receive new organs, but the term also refers to the commercialization of the process of transplantation in general (Shimazonoa, 2007:956). The benefits of transplant tourism to the recipient are life-saving treatment and a quicker source when waiting lists are long at home, because people in poverty are more willing to donate precious organs (Scheper-Hughes, 2011). However, rather than altruistic donations, this need has created a malicious trade of body parts, most commonly in the form of kidneys. This worldwide commercialization of organ donation is made possible by neoliberal globalisation, and the resulting flexibility and mobility of individuals and markets,which creates demands on the bodies of people who are considered disposable: the poor and socially marginalised (Scheper-Hughes, 2011). As a result, a concealed “body tax” has been imposed on these marginalised populations in the form of selling their organs (Scheper-Hughes, 2011:85). This type of inequality and power play is exposed by and inherent in kidney transplants abroad, yet often ignored in favour of biomedical success stories.

A relevant case study comes from India. Early cases of transplant tourism emerged there due to the rapid transfer of transplant know-how to the sub-continent.  Cohen describes how networks organising kidney transplantation follows Diaspora networks in the Indian context. Additionally, the emergence of organ transplantation clinics in India after the 1980s and 1990s coincided with the liberalisation of medical services, declining state programs and the rise of private clinics (Cohen 1999:133). Recipients mainly from Europe, the Middle East and Japan   began arriving in India, participating in a system that operates under blurred rules and flexible standards that keep unrelated donors and recipients separate in the organ trade. (Cohen 1999:145) The recipients receive the life-saving organs they look for, yet little attention is given to the consequences to donors.

The social consequences of transplant tourism are exposed in Moniruzzaman’s (2010, 2012 and 2013) similar case study in Bangladesh. The buyers are mostly wealthy locals or people with foreign citizenship of Bangladeshi heritage. The free market enables high supply for the patients,but donors are not necessarily lifted out of poverty, encouraging ethical debates on how much a body part is really worth. The amount of money gained from donating a kidney has fallen because of the abundance of the poor willing to donate.  This illustrates the commodification of body parts, which is opposed by medical anthropologists, who argue that it exploits the desperation of the vulnerable who can only participate as donors, never buyers (Moniruzzaman, 2012). Fox and Swazey (1992:3) criticise this transformation into commercial terms, calling it the “commodification of body parts”. Any organ becomes a “spare part” rather than a precious and inseparable part of a person, creating “biological reductionism” which can lead to deceitful effects for both patients and donors (Fox and Swazey, 1992:206-207).

The effects of organ commodification in Bangladesh show that the world is “divided into organ buyers and organ sellers”, which Scheper-Hughes calls a “medical apartheid” (2003:198).  Additionally, the commercialization of healthcare goes hand-in-hand with improvements in biotechnology, which means that the poor are excluded from life-saving treatment opportunities (Cohen, 1999). The commercialization of living things brings about new forms of structural violence, including “bio-violence” (Moniruzzaman, 2010:158). As Moniruzzzaman defines “Bio-violence is an instrument to transform human bodies, either living or dead, either whole or in parts, as sites of diverse exploitation viable through new medical technologies. In essence, bio-violence is an act of inflicting harm and intentional manipulation to exploit certain bodies as a means to an end.” (Moniruzzaman, 2012:72) This type of violence acts as a suppression of the poor and is hidden for personal gain, which means that it is unethical as well as abusive. Critical MA uncovers these hidden dynamics behind the biased constructions around organ transplants, while the medical community only focuses on increasing living donations, regardless of the created imbalances in the Global South which can hinder the development of health service provision in certain regions.

In this process, recipients try to rationalise organ commodification by claiming that it is a necessary sacrifice for saving lives. However, Moniruzzaman’s ethnography uncovers that wealthy patients would prefer to buy an organ from the poor instead of asking for a donation from family members, meaning that organ trafficking is not always “the only choice” for survival. This implies using the bodies of the poor for the gains of the wealthy, causing ingrained structural violence against the poor which is justified as a life-saving necessity.  The long-term effects on the donors are profound, and most of those interviewed in Bangladesh had their act from their families and community (Moniruzzaman, 2012). Once revealed, they risk stigmatisation. It can also be hard to cope with reduced labour ability, marriage options and negative health consequences: “As Keramat, a 25-year-old seller, said while weeping uncontrollably, ‘We are living cadavers. By selling our kidneys, our bodies are lighter but our chests are heavier than ever.’”  (Moniruzzaman, 2010:323).

The concept of organ scarcity itself is subject to debate. Lock (1995) calls this shortage self-made, and critiques pro-market views in the Western transplant community that help create this presumed scarcity. She claims that adopting the market model for transplantation completely ignores debates around inequalities, dissent, and unintended consequences   for vulnerable people, and the effects of manipulations and mismanagement by transplant professionals in the developing world (Lock,1995:392). Consequently, receiving new organs is treated as a right, and so transplants are pursued no matter the consequences. When this becomes a right, it creates a perceived organ shortage and problems of supply and demand.

The construction of this organ scarcity discourse has led to the practice of organ-vending among Pakistan’s desperately poor.  The free-market system, as well as privatised medical services under inefficient state health regulations, does fuel the transplant tourism. Against interpreted regulations, vendors are not necessarily free people who have agencies to make certain choices when selling their kidney. Impoverishment, and in most cases illiteracy and indebtedness, leave people without many other options than to offer their kidney for sale, without the chance to receive them (Moazam, et.al, 2009). In Pakistan, the limited number of high-tech health facilities and trained transplant professionals almost exclusively serve the needs of wealthy foreign patients rather than local patients, resulting in the exploitation and neglect of poorer sections of the population flourishing internet marketisation enables private transplant centres to promote kidney sales under softened health tourism packages, while in reality offering commercial transplants that account for nearly two-thirds of the total for wealthy patients from the Middle East, India and Europe(Moazam, et.al, 2009:31). This on-going system also creates an injustice for more than 50 000 Pakistani patients annually who are at the final stage of renal failure and cannot have their needs met  (Naqvi et al., 2007: 934).

The case study on Pakistan shares similarities with other countries, such as Bangladesh, where organ vendors feel   victimised and betrayed by brokers and the medical community. Individuals report being pressured to sell their kidneys under the burden of accumulated debt and continuing feudal relations, where this becomes the only option imposed by landowners as a means for paying their debts (Moazam, et.al, 2009:40). The majority of the vendors are found in intergenerational bonded labour to local landlords and, being illiterate, are often tricked into donating or given less money than originally promised (Naqvi et.al, 2007: 937).This enforces a cycle of poverty and abuse, an impossible task for the victims to break.

The organ markets of the Global South also display inner stratifications, where some countries are able to offer good kidneys for higher prices or with better medical care. Lundin (2010) looks at organ vendors from Israel and Moldova, who focus on Moldova as the hub of organ trade after rumours emerged about unhealthy kidneys and failed transplants in South Asia. Organ transplantation, therefore, shifted to use a market which is cheaper or illegal in the home country, but which is also perceived as safer than other developing world locations. This shows the stratification that can happen in the markets of the Global South, where some countries or regions become the favoured destination for the wealthiest patients. Moldova has turned into an emerging and promising market, but the process leaves the same psychological and economic scars on the lives of the poor as seen in the previous case studies. The victims of organ trade feel their health undermines their social status in their community, which is irreversibly impaired and stigmatised (Lundin, 2012:13). This is all a consequence of what Lundin calls the “dream of the regenerative body”, enforced by a neoliberal worldview and economic system, which allows the wealthy to attempt to buy life through the bodies of the world’s poor (Lundin 2010:11). Sanal criticises this “new medicalized idea of the human created by doctors” (Sanal, 2004:284). In a study from Turkey, she shows that transplant professionals can bend medical ethics and exploit the urgent needs of the patients and the vulnerability of the vendors, to get higher prices for commercialised body parts, where kidneys are marketed as better than those from India, for example (Sanal, 2004:304). Privatisation has become the means through which inflexible ethics can be avoided, and which, according to Sanal, justifies the development of a stratified system of transplantation where certain types of patients are saved over others(Sanal, 2004:304).

As organ transplantation is essentially about saving lives through the gifting of body parts, the anthropological debate often looks at gift exchange relations. Fox and Swazey (1992) describe how a person donating a part of their body is making a precious gift. To a very ill patient, this gift is priceless. At the centre of organ transplantation is the desire of individuals to survive at any cost (Sanal, 2004) which leads to justify exploitation and imbalance in the transplant market, as seen before. After the boom in the 1980s in the renal transplant, scarcity discourse led to a relaxation of rules in the medical community regarding living donors, shifting kinship requirements to “emotionally related donors” and then “living stranger donors”(Fox and Swazey 1992:47-48).The biomedical community often ignores the dynamics of giving, receiving and repaying that are always involved in gift exchange relations, including transplants. The commodification of body parts obscures these realities, which authors call “de-gifting” transplantation (Fox and Swazey, 1992:207). This understanding alters humanness when bodies become simple biological objects.MA helps uncover the true social dimensions behind the giving and receiving acts of transplantation that are often ignored in other PH approaches.

The case studies on the attitudes and consequences of organ trafficking revolve around the idea of what the body is, and how it is perceived by people. Consequently, the issue of organ transplantation and global trafficking is a complex social, economic and political one, as much as, if not more, a biomedical one (Lundin 2010:15). When looking at the implications for PH, the critical MA approach allows the development of multidisciplinary planning and modalities. From a development perspective, it is absolutely essential to consider the short-term and long-term, the visible and hidden consequences, and the complex contexts that influence the success of intervention strategies.

Conclusion

The advancements in medical interventions in the Global North for a non-communicable disease (here renal failure) has altered during the diffusion of this practice to the Global South. The life-saving quality of organ transplant has given rise to unintended consequences like organ trafficking and the transgression of body rights of the poor and vulnerable communities in the Global South.

Critical MA perspectives help identify and reframe the inherent inequalities of racial, gender and regional disparities, especially the imbalance between the roles of the developing and developed worlds, during international organ flows which are missed by the reductionist and ethnocentric PH approach. Ethnographies deconstruct the one-sided, positive myths and discourse around life-saving organ transplants that in actual fact lead to loss of capabilities and lives for the poor in other parts of the world. Organ trafficking has created new forms of structural violence that disable the poor in the form of bio violence that deprives them from their last-resort asset, their body integrity, in an inhumane way.  The commodification of organs changes the limits of free-market ideas around the rights and vulnerabilities of the global poor. The so-called created organ scarcity in the North has given rise to transplant tourism which only serves patients who can afford treatment, a clear global injustice. The flow of organs has created a new bazaar that the world is not divided only in terms of economic import and export, but also in terms of the trade between organ buyer and organ seller countries, an important point to note in the implementation of health developments and interventions. Far-reaching social consequences and realities are often ignored in PH policy and in medical communities, which focus on success stories of transplantation.

Rather than making generalisations on the organ transplantation in a global context, the situation requires examination through multiple lenses due to its complexity. Current PH policy approaches are inadequate and need a multi-dimensional approach, including the use of critical MA to better inform on the social realities of the donor communities, both before and after donations.

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*Emre Yuksek is a Turkish Chevening Scholar Studying MA in Development Studies at the Institute of Development Studies (IDS) in the UK. He has also earned master degrees in Middle East Studies and Asian Studies from the Middle East Technical University. He has been working for the Turkish Government since 2006 as a vice program coordinator in Palestine, and as a field coordinator in Syria and Lebanon for Turkish Cooperation and Coordination Agency. In development studies, his main interests are post-conflict recovery, reconstruction programs, political transition processes, refugee returns, urban poverty and global inequalities.    

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