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The Organ Transplant Debate in Egypt: a Social Anthropological Analysis

Le débat sur les greffes d’organe en Égypte : analyse anthropologique
Sherine Hamdy
p. 357-365

Résumés

In this paper, I take the heated debate about the ethics of organ transplantation in Egypt, to ask why Egypt is the only Muslim country in the world that has, for the past three decades, been unable to pass legislation for a national organ transplant program. Why is it that patients and even physicians articulate their antipathy to organ transplantation in terms of “Islam” when most Muslim scholars of Islamic law have argued that the donation of organs is permissible? I argue that we cannot reduce the question of the ethics of organ donation in Egypt to abstract Islamic legal categories (permissible (mubâh) or impermissible (harâm) – as analysts both within and outside the Muslim world are apt to do. Doing so overlooks the pervasive problem of social inequalities that persist in the Egyptian medical system. In the context of vast discrepancies in health status and health care delivery, ordinary Egyptians are wary of medical institutions’ claims of re-using body parts for the common good.

Le débat sur les greffes d’organe en Égypte : analyse anthropologique

Cet article traite du débat sensible sur l’éthique de la greffe d’organe en Égypte et s’interroge sur la question du pourquoi l’Égypte est le seul pays musulman dans le monde qui a, durant ces trois décennies, été incapable de faire passer une législation pour un programme de transplantation nationale. Pourquoi les patients et même les médecins formulent-ils leur antipathie à la transplantation d’organes en termes d’« islam » quand la plupart des érudits musulmans ont établi que le don d’organe était possible ? Je soutiens qu’on ne peut réduire la question de l’éthique du don d’organe en Égypte à des catégories juridiques islamiques abstraites comme le licite (mubâh) ou l’illicite (harâm) – ainsi que le font des analyses provenant à la fois de l’intérieur et de l’extérieur du monde musulman. Ce faisant, on néglige le problème majeur des inégalités sociales qui persistent dans le système médical égyptien. Dans un contexte de dépenses de santé déficitaires, les Égyptiens hésitent beaucoup face aux demandes des institutions médicales à utiliser des parties de leur corps pour l’intérêt commun.

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1In Egypt, more contested than any other bioethics topic, organ transplantation has been taken up in the mass media – in print, state television, radio, film, and religious sermons – reaching a level of public dispute not dissimilar to the question of abortion in the US The question is not whether to introduce transplantation into Egypt or not: kidney transplantation has carried out in Egypt since the 1970s and cornea transplants since the 1950s. However, efforts to initiate a national organ transplant program have consistently failed in the Egyptian Parliament since the late 1970s. There has been legal opposition to the recognition of “brain-death” as “legal death” and organs are not legally or routinely procured from heart-beating brain-dead patients as they are elsewhere. This has meant that routinized transplants are limited to corneas taken from systemically dead corpses, and to kidneys and liver lobes taken from living donors. Yet although these operations are carried out in a number of Egypt’s public and private hospitals, there is still a considerable amount of debate about the ethical nature of the practice of organ transplantation in its present forms. Patients, family members, physicians, and others in Egypt differ in opinions about whether it is permissible to take a body part from the dead, whether it is a safe or beneficial practice to cut into a healthy living donor, whether organ transplantation actually “saves lives”, and about the vulnerability of poor Egyptian bodies to a black market in organs and to organ theft.

2Creating a social imaginary beyond the personal experiences of a relatively small number of patients, the national media transformed the question of organ transplantation into a “hot button issue” about which ordinary Egyptians have strong opinions. The media not only depict these debates, but help shape them as well, providing the dominant discursive terms by which the public comes to question the ethics of contested cases and ailing bodies. Studying an ethical debate in a given social setting has been a productive way for anthropologists to study deeply held beliefs that are sharply articulated during times of crisis (Turner 1974, Ginsburg 1989, Gusterson 1996). In Egypt, organ transplantation exacerbated longstanding disputes over social inequalities in basic health care, state welfare, and the place of religious discourse. It triggered major ethical disagreements and public debates in Egypt, not merely among academics or those personally involved. The question was debated on various television programs, and medical authorities and Islamic scholars used the state-controlled media as a platform from which to educate the “masses” about the proper ethical dispositions toward this particular medical procedure. These figures saw themselves as not only crucial to the education of the Egyptian public, but also as responding to a global stage in which Egypt needed to “catch up” with the rest of the modern world. Religious scholars who condoned the practice remarked that ethics and values were universal – that is, that Muslim ethics were similar if not identical to those articulated in the field of Western bioethics. A few opposing voices claimed that Muslim ethics, in their particularity, needed to be asserted to counter the pressures of secularization and godlessness.

  • 1   The death of healthy living donors characterized the early experiments in liver lobe procurement (...)
  • 2   Of course, rates of death and graft rejection characterize organ transplantation in its early yea (...)

3Meanwhile, stories circulated of botched operations in many of Cairo’s private clinics, many cases where recipients died, and some in which previously healthy donors died1. Would getting a transplant really prolong someone’s life? Many patients in renal failure, stuck to dialysis tubes keeping them alive, weighed risks against benefits, as they would see fellow patients leave the ward for the promises that a transplant would bring. Some, after having their families scrape together all their savings to afford a transplant, ended up with “failed” operations: their bodies would reject the graft, ending them back on dialysis. Others never came back, either because they were now better and “free” from the dialysis machines, or because they were dead2. Results, experiences, and perceptions of organ transplantation were as uneven as Egypt’s social landscape. Sick patients in organ failure in otherwise socially and economically comfortable families had much to gain from organ replacement; the poor had much to fear.

  • 3   Propaganda at the time of the Egyptian revolution (1952) claimed that under King Farouk, one thir (...)
  • 4 Cam McGrath IPS (Inter-Press Service Agency) “Viral Time Bomb Set to Explode” May 5, 2009 http://i (...)

4The conglomeration of diseases that organ transplantation was meant to treat, and people’s understandings of their etiologies, provided an important context for the debates that ensued. With the lack of a cadaveric procurement program, the three types of transplants that were available: of the cornea, the kidney, and the liver, each represented a major disease that had come to be identified with Egypt. Corneal opacity was linked with trachoma, an endemic disease once known to travelers of the 14th to 19th centuries as “Egyptian ophthalmia”, causing blindness to a significant portion of the population in either one or both eyes3. Trachoma, a bacterial infection that when left untreated could lead to the loss of sight, was associated with ignorance and lack of hygiene, particularly since the 19th century European expansion into Egypt (Hamdy 2005). Diseases of the kidney and liver were associated with bilharzias, or schistosomiasis, an endemic snail-borne parasite of the Nile, also associated with backwardness and rural poverty. In recent decades, however, epidemiologists have noted an alarming increase of kidney and liver diseases of a different course, and of apparently different causes. Doctors and patients alike linked renal and liver disease to toxic mismanagement, polluted air, contaminated water, the widespread use of dangerous pesticides and unsafe food storage. These widespread understandings of the etiology of disease – as the result of a general weakening of the body in a contaminated, corrupt environment – played a major role in determining patients’ decisions to refuse organ offers from relatives, as they argued that they were loathe to leave their loved ones “incomplete” (without an organ) in the same environment that made their own “whole” bodies ill. Moreover, in the 1960s and 1970s, a government-backed mass health campaign to treat schistosomiasis that re-used needles ended up inadvertently infecting the population with Hepatitis C. Egypt now ranks as having the highest prevalence of this deadly liver virus in the world, and the devastating repercussions of infection are now presenting themselves clinically, with international reports suggesting an imminent “Viral Time Bomb”4. Somewhere between 10 to 30% of the entire Egyptian population is said to be infected with Hepatitis C, with liver diseases dominating national health concerns. Voices of dissent in the state-aligned media as well as those in the opposition party newspapers again blamed the government for negligence.

5This brief background outlining disease types and what I call “political etiologies” – the linking of disease origins with political and social ills – is necessary to understanding the shape in which the debate about organ transplantation unfolded (Hamdy 2008). Equally important is the erosion of public health facilities and the escalating privatization of medical treatment in the context of a growing gap between rich and poor (Mitchell 2002). Yet everywhere in the Egyptian media and in the legislature, discussions of organ transplantation were saturated with references to the opinions of religious authorities. Understanding opposition to organ transplantation in terms of “religion” both obfuscated and bolstered arguments against bodily exploitation.

Is this a religious debate?

  • 5   In Saudi Arabia, an “experimental” phase of using brain-dead “cadaveric” kidneys began in 1983 an (...)
  • 6   In Iran, the history of renal transplantation has occurred in three stages. From 1967-1988 all ki (...)

6Many commentators, politicians, physicians, and journalists have maintained that Islam has nothing to do with resistance to organ transplantation, and they cite as their evidence the fact that Saudi Arabia5 and Iran6 have both long passed laws enabling national organ transplantation from both living and brain-dead donors. These two countries, they point out, purportedly operate under Islamic law while Egypt does not. Egypt’s legal system is derived from French and English codes, a legacy of colonial rule. However, the constitution states that the Sharî‘a is the major source of the law, and the personal status courts and family law technically function under the Sharî‘a, a function of the fact that secular governments have long considered “religion» to reside in the “private” domain (see Mahmood 2004). Many scholars have noted that the result of drawing on European codes has been “in some cases a much more rigid interpretation of Islamic law than had previously been customary” (Ernst 2003:128, see also Tucker 1998).  The argument made by those who are considered proponents of organ transplantation is that the resistance in Egypt must then be due to reasons other than Islam, namely the uncontrolled black market in body parts and reports of organ theft that have tainted the public perception of organ transplantation.

7It has become a truism to say that there is no official clergy in Sunni Islam, the dominant form practiced in Egypt. What this has actually meant differs among Muslims with different religious expressions and practices, as much as it differs across time and space (Bouzid 1998). The media in Egypt depict the views of religious scholars (especially those from Dâr al-Iftâ’ – the modern state bureaucratic institution that issues official opinions – or al-Azhar University – Egypt’s oldest Islamic University), alternating between elevating them as authoritative and deriding them as wholly irrelevant. Newspapers and legislators alike set these figures up as though they were the final voice to “deliver” an important message, particularly when it comes to changing peoples’ views on an issue for political expediency or for public health campaigns. When it is a message that echoes the views of many journalists in the state-aligned press, (such as those promoting organ donation) religious statements are used as evidence that the “resistant masses” are ignorant, both of modern scientific treatment of their bodies, and of their own religion. If it is a message that is not in the interests of state-aligned voices (such as opinions against organ donation), the offending scholars are disparaged for having no such authority, and the journalists quickly point to the fact that there is no official clergy (or papal figure) in Islam.

8All the culamâ’ of al-Azhar and Dâr al-Iftâ’ have permitted organ transplantation under the conditions that there be life-saving benefit to the recipient, no harm to the living donor, and no commercial exchange. In the case of cadaveric donation, the culamâ’ unanimously declared it was permissible, as long as the patients were “really” dead, and as long as consent was procured either from the patient before death, or from the surviving family. Yet one particularly charismatic and important popular religious figure in Egypt, the late Shaykh ash- Sha‘arâwî (1911-1998), opposed organ transplantation in all its forms. He was, at the time, not part of the established Azhar culamâ’ – although he had gone through formal religious training at al-Azhar – nor was he in the Dâr al-Iftâ’. He was a television figure, to whom former President Sadat had given his own slot on the government-owned channels in the late 1970s. Ash-Sha‘arâwî’s position was heavily publicized in the late 1980s and premised on the religious tenet that the human body belonged to God alone. “How can you give a kidney that you yourself do not own?” he had famously asked.

9Patients, their family members, physicians, and other religious scholars spoke of their bodies “belonging to God”, but they were not repeating it as a formulaic authoritative statement. Many imbued this theological tenet with a range of meanings. Parents who willingly donated kidneys to their children argued that the “body belonged to God” and it was through God’s gift that they were able to help their children. Others articulated that the “body belonged to God” as an argument against the practices of public state hospitals and their disrespect toward poor patients and dead bodies from the morgue. Others, in stating that the “body belonged to God”, lamented that toxic mismanagement had endangered people’s lives and bodies, signaling grave injustice and mistreatment of God’s blessings.

10Journalists in Egypt went to great lengths to argue that the religious scholars were “in disagreement” (ikhtalafu al-culamâ’) over the issue, and that, subsequently, momentum for an organ transplant program remained in limbo. I remain skeptical, however, about the causality that they assumed. Ash-Sha‘arâwî’s view was resonant in a particular environment in which benefit of organ transplantation was unclear. He was able to capture resistance and hesitancy that many people felt toward organ transplants for various reasons and labeled this resistance in terms of the “body belonging to God” – a basic tenet in Islam that no one would deny. This is a wholly different matter than the argument suggesting that ash-Sha‘arâwîhad caused people’s resistance to organ donation because of the authority he wielded. My research, in fact, demonstrates the rather limited effective power held by official religious scholars in everyday life in contemporary Egypt.

11The diagnostic mistake – of misinterpreting people’s aversion to organ transplantation as the direct outcome of the words of an “authoritative” religious figure – is a telling symptom of a much larger conceptual problem. Namely, too often “religion” is thought to reside outside the realm of the social world – in particular events, particular institutions, or the mouths of particular religious figures. If religion is understood to be located outside the rest of the social world, it is also thought to lie outside of time – thus fixed, static, unable to move with the times – and hence irrational.

12These assumptions are dangerous, not only because we thus misunderstand the “religious” views and experiences of people in, for example, the Muslim world where reason, rationality and science are articulated as being central to Islamic thought, but also because these assumptions obfuscate the articulations of European and North American religiosity and secularism (Asad 1993, 2003). Secularism is imagined to be devoid of religion. Yet the social practices of organ donation is one particularly obvious site in which secularist practitioners speak in terms of the rational, scientific and a-religious while they simultaneously re-articulate religion in a different guise. Take, for instance, the practice of procuring organs from anonymous brain-dead strangers, which drives the practice of organ transplantation in countries in Western Europe and North America. Anthropologists and social analysts of these organ transplant practices have documented that the major impetus for families to donate the organs of their deceased loved ones comes out of the motivation to “make sense” out of senseless suffering; to restore order and meaning to a sudden tragedy of death. Transplant-coordinators encourage grieving family members to imagine that their loved ones will “live on” in the bodies of others (Sharp 2006, Joralemon 1995, Lock 2002). The practice has thus depended not on the de-sacralization of the body but on a different orientation of its sacralization; death has been effectively re-conceptualized so that the person’s soul can be “freed” rather than “trapped” in limbo between life and death in a prolonged process of physical demise (Lock 2002). The restoration of meaning is located in the idea that this “freed soul” or “person” or “spirit” will, through an act of altruistic sacrifice, offer good to the world after tragic loss.

13A popular American bumper sticker to promote organ donation spells the idea out more bluntly: “Don’t take your organs with you to Heaven – Heaven knows we need them here!” Death in the body is cast as selfish and ungodly; the righteous path is to recycle body parts; the body’s role is to serve life on earth, not in the after-life. Transplant professionals and advocates in the U.S. and in Egypt as well lament what they call the “waste” of “scarce organs”, relegating resistance to transplantation to the sphere of religious irrationalism, intolerance, and bodily taboos (Sharp 2006). Medical and popular media accounts thus only recognize the presence of religion in cases where it emerges as “constraint” or “obstacle” to a life-saving procedure. The productive forces of religious views, such as sacralizing the body and imagining it to be available to “give the gift of life” and “living on” in the bodies of others, is elided in the rhetoric of a universalist medical science, which supposedly exists apart from and devoid of religion.

  • 7   By “the Islamic textual tradition” I am referring to the Qur’an and its exegesis, the hadith comp (...)
  • 8   Like in Mahmood’s analysis of her informants’ references to authoritative figures, here cAbd ar-R (...)

14Throughout my fieldwork I encountered various ways in which patients, their family members, doctors, and religious scholars in Egypt make moral calculations – weighing benefits against harms – about treatment options in the face of life-threatening illness. They do so by drawing on formal medical knowledge, widespread cultural and moral imperatives, Islamic principles found in the textual traditions7, popular conceptions of the body, political etiologies, kinship structures as ethical relations, and their own personal experiences. Many patients in kidney failure, like cAbd ar-Rahîm, whom I met in a dialysis ward in Tanta,Egypt, would tell me that they knew that kidney failure was a terminal illness, but that they nevertheless refused the idea of organ transplantation because “the body belonged to God”. As I spent more time with cAbd ar-Rahîm, frequenting the dialysis center, and speaking with him over the course of several months, I learned that his previous experiences with medical treatment, his conviction that it was best to stay away from doctors in general, his unwillingness to expose his healthy son to what he considered unsafe and corrupt medical practice, his knowledge of a fellow patient who died during the operation, and the high financial cost such a procedure would bear on his family all strengthened his conviction.8 In his analysis, “religious” factors were not divorced from “medical” factors (about efficacy, safety, risk, etc.). All these factors together weighed into what cAbd ar-Rahîm would refer to as discerning between al-halâl (that which is permissible) and al-harâm (that which is forbidden).

15Thus, religion is embedded within, rather than separate from, other social aspects of people’s lives. I am not arguing that religion should be merely “explained away” by diverting attention to other social and material factors. Nor do I understand religion as a set of codified rules that imposes on believers the formulae of how to think and act. Moreover, while religion clearly provides the framework from which people understand and work to alleviate their suffering, this does not mean that religion exists only for this purpose, or that people merely manipulate the terms of religion to maximize this function from it. And while some people may appeal to religious ideology to justify their own interests, there are just as many examples of those who work hard to bring themselves into conformity with religious virtue, and many who fear that they have fallen short. Much of Euro-American scholarship and commentary on Islam tends to portray Muslims either as automatons mindlessly enacting edicts from religious figures, or to relegate religion to the status of “false consciousness”, epiphenomenal to social and material factors that are more “real”.

16In other words, to ask if antipathy toward organ transplantation is because of “Islam” or if it is really because of questions of social inequality or injustice misses the ways in which social inequality informs Muslim ethical positions. Calls for equitable treatment and justice are understood and framed discursively in terms of Islam. Patients and physicians debating the ethics of organ transplantation did not consider “Islam” to be a codified, static set of rules that imposes itself on treatments of the body. Rather, they incorporate Islamic tenets into their critiques of medical mistreatment in their calls for social justice. When these larger issues about health inequality are adequately addressed, and when organ transplantation indeed appears a benefit that is accessible to the bulk of patients, Muslim scholars who have argued that organ transplants are permissible in Islam will have much more credibility within Egyptian society.

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Notes

1   The death of healthy living donors characterized the early experiments in liver lobe procurement in the 1980s.

2   Of course, rates of death and graft rejection characterize organ transplantation in its early years everywhere it was practiced in the world, including in the U.S., which was home to the first kidney transplant in 1954 (Fox and Swazey 1987). This history is generally erased from social consciousness in the U.S., where the media has been swept up by ideas of transplantation as “medical miracle” (Scheper-Hughes 2000, Lock 2002, Sharp 2006).

3   Propaganda at the time of the Egyptian revolution (1952) claimed that under King Farouk, one third of the rural population was blind. While it was in their interest to exaggerate numbers, by all accounts blindness was prevalent (Hamdy 2005).

4 Cam McGrath IPS (Inter-Press Service Agency) “Viral Time Bomb Set to Explode” May 5, 2009 http://ipsnews.net/news.asp?idnews=46723.

5   In Saudi Arabia, an “experimental” phase of using brain-dead “cadaveric” kidneys began in 1983 and lasted until 1988, during which 55 kidneys that had been rejected by European centres were shipped to Saudi Arabia free of charge, an experiment which “emboldened” the Saudi team to accept kidneys deemed unacceptable in Europe. Since this time Saudi Arabian hospitals have developed their own procurement programs from brain-dead victims, and ICUs are reportedly “full” of young highway accident victims whose organs are deemed suitable for procurement. In 1997, 267 kidneys were transplanted. Beginning in 1994, other organs besides kidneys were also harvested (lungs, pancreases, livers, hearts, heart valves). The rate of consent among family remembers has remained around 34% over these years. See Abdullah A. Al-Khader, “Cadaveric renal transplantation in the Kingdom of Saudi Arabia” Nephrology Dialysis Transplantation (1999) 14: 846-850.

6   In Iran, the history of renal transplantation has occurred in three stages. From 1967-1988 all kidney transplants were from living related donors. From 1988 onward, a program was initiated to regulate transplants from living unrelated donors. In 2000, a law passed to allow for procurement from brain-dead donors, but very few families consent to this type of donation. See Ahad J. Ghods, “Renal transplantation in Iran” Nephrology Dialysis Transplantation (2002) 17: 222-228.

7   By “the Islamic textual tradition” I am referring to the Qur’an and its exegesis, the hadith compendia and their exegesis, the Sunna more generally (teachings from the life of the Prophet and his companions), and the dominant ethical, theological, and legal commentaries that emerged out of them.

8   Like in Mahmood’s analysis of her informants’ references to authoritative figures, here cAbd ar-Rahîm was not merely invoking the words he attributed to Shaykh ash-Shacrâwîas a memorized formula because of the authority it bears. Rather, when cAbd ar-Rahîm invoked this statement to explain his particular situation, he was also commenting on this statement, and imparting new meanings to it. In fact, its very authority is constituted through cAbd ar-Rahîm’s process of interpretation and practice (See Mahmood 2005).

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Sherine Hamdy, « The Organ Transplant Debate in Egypt: a Social Anthropological Analysis », Droit et cultures [En ligne], 59 | 2010-1, mis en ligne le 01 juin 2010, consulté le 31 août 2014. URL : http://droitcultures.revues.org/2184

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Auteur

Sherine Hamdy

Sherine Hamdy est professeure assistante d’anthropologie et elle occupe la chaire « Kutayba Alghanim » des sciences sociales à l’Université de Brown aux États-Unis. Elle est spécialisée en anthropologie médicale, en anthropologie des sciences, et dans les formes d’éthiques contemporaines islamiques. Elle est l’auteur de plusieurs articles incluant «When the State and Your Kidneys Fail: political etiologies in an Egyptian dialysis unit», American Ethnologist, 2008; «Islam, Fatalism, and Medical Intervention», Anthropological Quarterly, 2009, and «Blinding Ignorance: Medical Science, Diseased Eyes, and Religious Practice in Egypt», Arab Studies Journal, 2005. Son livre, Our Bodies Belong to God: Islam and Bioethics in Egypt, va bientôt paraître à the University of California Press. sherine.hamdy@gmail.com

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