Epistemic Communities, Human Rights, and the Global Diffusion of Legislation against the Organ Trade

Epistemic Communities, Human Rights, and the Global Diffusion of Legislation against the Organ Trade

Epistemic Communities, Human Rights, and the Global Diffusion of Legislation against the Organ Trade


Over the past several decades, over 100 countries have passed legislation banning commercial organ transplantation. What explains this rapid, global diffusion of laws? Based on qualitative data from in-depth interviews, historical analysis, and secondary sources, this paper explores the role played by the medical epistemic community and human rights in the global spread of laws against the organ trade. In addition to shaping, guiding, and influencing norms and approaches to transplantation, the epistemic community has been instrumental in the development of various resolutions, policy initiatives, recommended practices, statements, legislation, and model laws. Moreover, the epistemic community helped position the organ trade as an issue of societal and global importance, and it persistently encouraged states to undertake actions, such as implementing legislation, to combat the organ trade. Critically, the epistemic community’s efforts against the organ trade incorporated the concepts of human rights, integrity, and dignity, which had diffused globally and become institutionalized in the period after WWII.

1. Introduction

Transplantation, the process of replacing failing organs in one individual with healthy organs from another, is “hailed as one of the great miracles of modern science” ([1], p. 9) and celebrated as “one of the major accomplishments of the last half of the twentieth century” ([2], p. 20). Although saving or significantly extending innumerable lives worldwide [2], transplantation has also generated troubling consequences, including the global organ trade.
The organ trade, a “flourishing” multimillion-dollar, black market industry ([3], p. 222), has become a transnational issue, affecting all countries and regions. Central to the global growth and spread of transplantation and the organ trade—as well as initiatives to combat the latter—has been the global medical epistemic community, comprised of transplant doctors, surgeons, practitioners, and researchers. Effectively the most active global actor in promoting efforts against the organ trade, the epistemic community constitutes a network of various regional and transnational actors (individuals and organizations, such as the Transplantation Society (TTS), World Health Organization (WHO), and the International Society of Nephrology (ISN)).
Since arising in the 1950s and 1960s, the epistemic community has been key to many developments regarding transplantation, including recommended practices, guidelines, resolutions, declarations, legislation, and model laws. However, as an important transnational actor with broad global authority, the epistemic community has not been reviewed in detail. Accordingly, this paper presents a history of the organ trade, and examines the rise, activities, and influence of the epistemic community in combating the organ trade.
Between January and December 2014, I conducted interviews with numerous individuals, including medical practitioners, researchers, policymakers, members of various organizations, journalists, rights activists, and lawyers. Interviews were open-ended and semi-structured [4], a particularly useful format since the study retained many exploratory features. Furthermore, open-ended questions offered subjects an opportunity to organize responses within their own framework, thus potentially increasing the validity of responses. While interviews and questions were semi-structured, they involved many follow-up queries and creative locutions in order to further probe issues of merit or pursue clarity [4].
In addition to interviews, I attended the World Transplant Congress (WTC) in July of 2014, allowing me to observe dynamics of the global transplantation community. The congresses are regular multidisciplinary gatherings that allow participants from around the world to “share information, learn from a variety of perspectives, present or critique research, raise questions, receive training, collaborate on topics of mutual concern, and coordinate potential responses to various issues” [5]. The congress, one of the largest, most comprehensive transplantation meetings ever assembled, focused on a variety of issues and involved representatives from over 80 countries [5,6]. During the WTC, I observed numerous presentations and panel discussions, attended a forum focusing on organ trafficking and harvesting, and conducted interviews with individuals from around the world.
Finally, I incorporate information gleaned from an assortment of sources, such as non-governmental organizations (NGOs), medical institutions, governmental or health ministries, and regional or global organizations (e.g., the United Nations (UN) or WHO). Documents examined include written laws, websites, newsletters, press releases or statements, government senate or commission hearings, summaries and reports, and countless news articles available from the Lexis-Nexis database or general online searches.
Data analysis is based on data triangulation: obtaining, comparing, and contrasting evidence from a wide range of data sources. Relying on multiple sources of data allows for the convergence of various lines of inquiry and strengthens validity [7,8], and is important in revealing the role played by epistemic communities in combating the organ trade.

1.1. The Organ Trade

An underground, shadowy enterprise, the international organ trade is complex ([9], p. 55). Furthermore, it is largely misunderstood and can be permeated by extremism and sensationalism [10,11]. Though organ procurement and similar activities date back millennia [12], the contemporary organ trade arose within the context of globalization, through advances in medicine, technology, and the sciences, and a global shortage in organ donations and recipients’ needs for life-saving transplantation [13,14,15,16,17].1
Involving a range of health, criminal, and human rights issues, the organ trade affects all regions of the world [18]. Moreover, the organ trade is dynamic and fluid, frequently shifting to and appearing at different times and locations due to various factors. In the past, estimates have suggested that approximately five to ten percent of the total transplants performed worldwide involve trafficked organs, although obtaining accurate information or figures about the organ trade is recognized as difficult [19,20,21]. Regardless of location, the organ trade encompasses several different activities sharing the underlying trait of commercial organ transplantation or “a policy or practice in which an organ is treated as a commodity, including by being bought or sold or used for material gain” [22].
One facet of the organ trade involves the trafficking of organs, tissues, and cells obtained through coercion, financial transaction, fraud, or consent [23].2 Importantly, the notion of consent is often staunchly and widely rejected, since the organ trade occurs within the context of crippling inequalities, illiteracy, poverty, and vulnerability [17,24,25,26,27].3 Decades of experience have illustrated that organ sellers “are the poor or the vulnerable, whose actions reflect financial desperation and ignorance, not autonomous agency” or willful consent ([28], p. 2).
In various poverty-ladenrural villages in Pakistan, large segments of the adult population have sold an organ, while in several countries many kidneys procured from the local population are for foreign recipients [18,29]. At times, vulnerable individuals may be “treated” for a medical ailment, which may or may not exist, and then have organs extracted without their knowledge or consent ([30], p. 672). Generally, organs sold for transplant generate considerable profits for traffickers, brokers, and corrupt officials, leaving meager (or no) returns for donors [31].
Another facet of the international organ trade involves the trafficking of humans for the end purpose of organ removal [31]. This facet of the organ trade received particular attention within the 2000 UN Trafficking Protocol, which states that trafficking is:

“…the recruitment, transportation, transfer, harbouring or receipt of persons, by means of the threat or use of force or other forms of coercion, of abduction, of fraud, of deception, of the abuse of power or of a position of vulnerability or the giving or receiving of payments or benefits to achieve the consent of a person having control over another person, for the purpose of exploitation. Exploitation shall include, at a minimum, the exploitation of the prostitution of others or other forms of sexual exploitation, forced labour or services, slavery or practices similar to slavery, servitude or the removal of organs.”
With the UN’s 2000 Trafficking Protocol primarily focused on human trafficking for the purposes of general exploitation, analysts felt it failed to give adequate attention to the organ trade, lacked specifying important aspects of the phenomenon, and only included organ removal as an addendum or afterthought [33,34]. The medical community, which has long taken the lead on the issue of the global organ trade [35], especially thought a more conclusive, detailed description was required. In 2008, during an international conference in Istanbul, Turkey, a more thorough discussion of the organ trade was provided. The Declaration of Istanbul [22], released at the conclusion of the conference, defines organ trafficking as:

“the recruitment, transport, transfer, harboring, or receipt of living or deceased persons or their organs by means of the threat or use of force or other forms of coercion, of abduction, of fraud, of force or other forms of coercion, of abduction, of fraud, of deception, of the abuse of power or of a position of vulnerability, or of the giving to, or the receiving by, a third party of payments or benefits to achieve the transfer of control over the potential donor, for the purpose of exploitation by the removal of organs for transplantation.”
Part of the significance of the declaration is that it presents clear definitions of complex, potentially vague processes, thus creating a common framework for broader understanding and cooperation ([13], p. 116).Importantly, according to the UN, the previous lack of “internationally agreed definitions…to provide a framework for cooperation in combating the trafficking in human organs made it more difficult to understand and analyse the problem and its extent, and eventually to take appropriate countermeasures at the national, regional and international levels” ([36], p. 1306).
Subsumed within the declaration’s definitions is a description of transplant tourism, distinguished as, “[t]he most common way to trade organs across national borders” ([16], p. 956). Transplant tourism involves organ recipients traveling abroad to receive organs procured from donors, and it can include commercialism, organ trafficking, and human trafficking for organ removal [37]. Demonstrative of the complexity of the organ trade, transplant tourism can occur in several different ways.
One potential pathway involves recipients traveling to the donor’s country of residence. Reports describe how recipients from across Southeast Asia have traveled to Taiwan and China to purchase organs procured from executed prisoners. Although Taiwan eventually ceased the practice after pressure from human rights organizations ([38], p. 58), China allegedly continues to take organs from executed prisoners [18,27,39,40,41]. This pathway is also illustrated by the “organ bazaars” of Turkey, Pakistan, and India, where foreigners arrive from far-flung locales to purchase organs from destitute locals [27].
A second pathway sees donors travel to the country of recipients. In some cases, donors from Eastern Europe or other developing nations have been brought to the USA, while Nepalese have been taken to India [16,18]. Notably, the recent discovery of a major transplant network between Israel and Costa Rica found that some Costa Rican donors were taken to Israel to provide organs [42].
The third type of transplant tourism occurs when both donors and recipients, as citizens of the same country, travel to another country for transplantation procedures. Often, this arrangement is made due to poor facilities and quality of care, high local costs, or stringent laws and regulations in the home country [43,44].4
In the final type of transplant tourism, recipients and donors, as citizens of separate countries, travel to a third country where transplantation is performed. This category has seen the growth of regional transplant hubs; for example, South Africa and Brazil have become favored centers for illicit transplantation activities, hosting donors from Eastern Europe and recipients from developed countries, such as Israel [16,45].5
Importantly, not all travel across national borders involving transplant recipients or donors is necessarily part of the illicit organ trade [13,19]. Rather, some travel for transplant involves the legal travel of related donor and recipient pairs from countries without transplant services to countries where transplantation is performed [13,20]. Also, transplant tourism is distinguished from general medical travel through the exploitation of donors who suffer coercion, threats, inducement, and fraud, and whose consent arises within the context of crippling poverty [24,37].
Beyond solely the purchase of organs, transplant tourism can affect other sectors of society. Global travel of potential recipients and donors may be arranged and facilitated by intermediaries and healthcare providers who coordinate travel and recruit donors.6 The Internet has also been used to attract foreign patients, with several websites offering all-inclusive transplant packages. Intriguingly, a pioneering survey of the global market revealed how the price of a renal transplant package can range between US$70,000 to US$160,000 [16], while the WHO estimates that brokers can charge as much as US$100,000 to US$200,000 for transplants [46].7
Transplant tourism, through brokered, organized packages or individually arranged trips, sees recipients spend money on hotels, food, transportation, gifts or amenities, and excursions, providing a potentially lucrative source of income for developing economies [37,47,48]. For example, Canadians, Britons, and Americans travel to countries such as India, Argentina, Cuba, and Chile [48,49]. Promising “first world health care at third world prices” [48], several Latin American, African, Southeast Asian, and Middle Eastern countries have become regional transplant tourism hubs.
Although accurate data remain elusive ([13], p. 117), meaning a fully comprehensive picture is still lacking, awareness of the organ trade’s reach has undoubtedly grown [16]. For example, at the 68th session of the United Nations General Assembly (UNGA), Joy Ezeilo, Special Rapporteur on Trafficking in Persons, Especially Women and Children, revealed that the organ trade “is a real problem that occurs oftentimes” ([50], p. 2). Embodying the “dark side” of globalization, it has joined illicit drugs, humans, arms, diamonds, gold, and oil as an illegal multibillion-dollar industry. Recently, a report by Global Financial Integrity estimated that the organ trade generates annual profits between US$600 million and US$1.2 billion, with criminals capitalizing on globalization, new communication platforms, and improved transportation technologies [51,52,53].
The organ trade also represents a “health and human rights matter” [54,55,56]. Regarding health, findings suggest the organ trade leads to deterioration in health status for both recipients and donors [57]. Threats stem from unsafe and substandard practices and conditions ([58], p. 1183), as well as inadequate testing, screening, or postoperative care [18,26,59,60]. Along with maiming or death, hepatitis B, HIV, aspergillosis, diabetes mellitus, fungal sepsis, cytomegalovirus, tuberculosis, donor-transmitted malignancy, wound infections, fatigue, regret, depression, and stigma are potential complications [20,43,61]. These individual-level afflictions can expand into broader public health issues through the potential spread of diseases or micro-organisms, as well as the need for costly provisions of healthcare and various resources for donors who have sold organs or recipients returning ill from abroad [57,62,63].
While commercial transplantation has occasionally been raised as a possible solution for organ donation shortages, it has more often been described as problematic, undermining altruistic donation, arousing serious ethical quandaries, involving or directly leading to profiteering, organized crime, and human trafficking, and categorized as a “gross violation of human rights” [18,27,54,64]. It violates internationally recognized rights such as rights to life, liberty, security, health and freedom from cruel or inhumane treatment, as well as various children’s rights [37,55,65,66,67]. Amongst the clearest reflections of the organ trade’s challenge to internationally recognized human rights is China’s state-organized organ trade. Servicing recipients from all over the world and predicated on the forcible extraction of organs from executed prisoners, China’s organ trade illustrates contempt and blatant disregard for basic rights and principles of human dignity [40,68].
While countries from all continents and regions are involved, implicated, or afflicted in some way by the organ trade [18,27], the international response has been lackluster [35,69,70].8 In 2009, both the UN and the Council of Europe (CoE) called for a new, binding international treaty to prevent the harsh, criminal realities of the international organ trade [70,71], and the UN pronounced an urgent need for “…prohibition of financial gain from the human body or its parts as the basis of all legislation on organ transplants” [70]. These calls would only be heeded years later; in mid-2014, the CoE adopted the Convention against Trafficking in Human Organs [23], the world’s first binding international agreement specifically focused on the organ trade.
Even with the decades-long absence of a binding international agreement, combating the organ trade has been a central feature within the world of transplantation, particularly due to the global medical epistemic community. The global medical epistemic community has broadened awareness of the organ trade, raised many concerns and outlined problematic implications, proposed solutions, and ultimately influenced transplantation policies and global positions.

1.2. Epistemic Communities

The concept of epistemic communities dates back to Ludwik Fleck and Michel Foucault, whose respective works discuss thought collectives and episteme [72,73,74]. For Fleck, thought communities involved groups exchanging ideas and interacting, while often remaining committed to a common set of ideas. Later, Kuhn explored the notion of a scientific community, noting that it involved individuals from a particular discipline whose work revolved around a shared paradigm [75]. Within sociology, Holzner (1968) was the first to use the term (in 1968), while Haas introduced the concept to international relations, seeking to understand the influence of scientists [76,77]. In the mid-1970s, Ruggie drew upon Foucault’s early understanding of episteme, and broadened the scope of Kuhn’s scientific community, arguing that epistemic communities arise from “bureaucratic position, technocratic training, similarities in scientific outlook and shared disciplinary paradigms” ([78], p. 570).
Though these respective contributions were important in formulating an early, foundational framework for understanding epistemic communities, the definitive discussion of epistemic communities would emerge in the early 1990s. Specifically, Peter Haas (1992) described epistemic communities as having:

“(1) a shared set of normative and principled beliefs, which provide a value-based rationale for the social action of community members; (2) shared causal beliefs, which are derived from their analysis of practices leading or contributing to a central set of problems in their domain and which then serve as the basis for elucidating the multiple linkages between possible policy actions and desired outcomes; (3) shared notions of validity—that is, intersubjective, internally defined criteria for weighing and validating knowledge in the domain of their expertise; and (4) a common policy enterprise—that is, a set of common practices associated with a set of problems to which their professional competence is directed, presumably out of the conviction that human welfare can be enhanced as a consequence.”
([79], p. 3)
A global collection of specialists, experts, scientists and professionals, and representative “significant others” for states, organizations and individuals, epistemic communities are driving forces behind the elaboration of world cultural models and principles, such as rationality and rational progress [80]. Importantly, epistemic communities, through their professional expertise and technical knowledge, frame and articulate debate, while also helping address complex, interdependent, and difficult global issues and problems(since policymakers are often unfamiliar with the technical aspects of particular problems or issues) ([79], pp. 1–3). Furthermore, they help define state interests and legitimate goals of action [81], set global standards, participate in communication and socialization processes, promote new ideas and policy innovations, create international institutions, and diffuse a particular world vision based on rationality, order, and science [82,83].
Epistemic communities’ control and framing of ideas and knowledge can lead to new patterns of behavior. Diffusion occurs via epistemic communities’ interactions within international organizations, in scientific bodies, at conferences, and through publications. These transnational links allow epistemic communities to exert concurrent pressure on governments and policymakers who redefine their own expectations, reach common understanding, and coordinate their behavior accordingly [82]. With world society lacking an overarching, authoritative state, there is room for innovation ([83], p. 169). In this context, the role and influence of epistemic communities gain credence, and they have become significant players in the international community [79,84]. Numerous analyses of epistemic communities have illustrated their influence in collective global responses to environmental pollution, whaling, arms control, global banking regulations, telecommunications, and international trade [82].
The following section reviews the history of the global organ trade in greater detail, while also noting the influence of the organ trade’s epistemic community. The review suggests that the epistemic community arrived relatively recently, truly emerging only in the 1970s and early 1980s. The epistemic community raised and broadened awareness of the global organ trade, helped position and categorize the organ trade as a significant health, rights, and ethical issue, proposed solutions, and was influential to many international policy initiatives, resolutions, statements, and declarations.
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