Political Challenges to Biomedical Universalism: Kidney Failure among Egypt's Poor

Abstract

Why do patients in need of kidney transplants in Egypt decline offers of kidney donation from their family members out of reluctance to cause them harm? Is it not universally the case that a living donor could live in complete health with a single remaining kidney? To address this conundrum, I discuss a case study from Egypt, in which patients reveal social, political, and environmental stresses on organ function that challenge the presumed universal efficacy and safety of kidney transplantation. I demonstrate that the biomedical position on the tolerable risks posed to the living donor is conditional and premised on particular social and historical contingencies that can be misaligned when applied in other contexts. Drawing on the work of Margaret Lock, I illustrate how analytical contributions of medical anthropologists can shed light on a political and public health impasse about how to legally regulate organ transplantation in Egypt.

Keywords:

• Egypt
• kidney failure
• local biologies
• organ transplant
• political etiologies

ACKNOWLEDGMENTS

I would like to express my gratitude to Sean Brotherton and Vinh-Kim Nguyen who organized the AAA panel in honor of the scholarship of Margaret Lock, where I first presented a draft of this article. I would also like to acknowledge the critical feedback of Attiya Ahmed, Adia Benton, Megan Crowley-Matoka, Bianca Dahl, Omar Dewachi, Rana Hamdy, Eleana Kim, Ian Straughn, three anonymous reviewers, and the persistent guidance and sharp critical eye of Lenore Manderson. Finally, I would like to thank Margaret Lock for her inspiring scholarship.

Notes

Since Egypt's popular uprisings began on January 25, 2011, newspaper reports of organ theft or exploitation of poor organ sellers have increased.

For the official fatwa delivered by the Grand Mufti on the ethics of procuring organs from brain-dead patients, see Dar al ifta’ (2007); for an analysis of Islamic and civil legal perspectives on organ donation in Egypt, see al-Bishri (2001).

I am not including patients’ perspectives on cadaveric kidney procurement, because, unlike in North America and Japan (Lock 2002), the issue of brain death has not been widely discussed among the Egyptian public; when I asked patients’ perspectives, most replied that they did not know about the issue. Egyptian physicians, however, were divided in opinion about whether the cessation of brain function signaled the complete death of the patient.

In long-term follow-up studies with living kidney donors, clinical researchers have demonstrated that their health levels were no lower than the average health levels of the US population (Gossmann et al. 2005; Fournier et al. 2012). However, because living donors must be in good overall health conditions when selected for, the average “American population” may not be the appropriate comparative group to assess the risks of living donation.

For two years, I conducted ethnographic research in the cities of Cairo, Tanta, and Mansoura, in private and public hospitals, dialysis wards, and state institutions. In addition to participant-observation of daily medical practice, medical conferences, religious lessons, and patients’ discussions in waiting rooms, I also formally interviewed more than 100 patients (those in need of kidneys or cornea grafts), 16 religious scholars, and more than 50 physicians (including nephrologists, internists, intensive care specialists, and ophthalmologists) to gain wider insight into the medical and social context in which the organ transplant debate took place. All subjects interviewed and observed gave their informed consent prior to inclusion in the study (Hamdy 2012).

It is easier to place the question about the status of the soul of a brain-dead patient in the realm of ‘culture’ rather than ‘science,’ as science explicitly does not take the soul to be a legitimate object of inquiry.

A successful kidney transplant can dramatically improve quality of life and is also much less expensive in the long run than a lifetime regimen of hemodialysis.

This is an Egyptian, God-centric expression of disapproval that the human body has come to be regarded as a mere exchangeable commodity. For medical anthropological critiques of the commodification of the body, see Sharp (2000) and Scheper-Hughes (2000). At the same time, many patients seemed to be wistful as they watched wealthier patients procure kidneys from donor-sellers. The common perception among clinicians and dialysis patients was that a typical seller-donor from whom they hoped to procure an organ was a plucky, young man who had ambitions about improving his economic prospects and who was able-bodied enough to believe that he could survive the extraction of a vital organ with minimal repercussions. For those who could bring themselves to consider buying an organ, many still dreaded the financial indebtedness that would result from liquidating assets or borrowing money to afford buying the organ from an unrelated seller. My fieldwork took place before the passing of legislation in 2010 that explicitly criminalized the buying and selling of organs; since this time, the law has been unevenly enforced.

Renée Fox and Judith Swazey (1974) memorably referred to the weight of the psychological burden and guilt associated with having received a donated kidney as “the tyranny of the gift.”

Most patients in kidney failure did not consider second-degree relatives as donors. For similarities, among African American patients also reluctant to consider family members as donors, see Gordon (2001).

This physician was quoted in Al-Wafd newspaper, July 12, 1989.

The trope of ‘cultural backwardness’ in public health discourse in Egypt is contrasted both with ‘correct’ (official) religious interpretation and with biomedical science (Hamdy 2005).

See Crowley-Matoka (2005) for an ethnographically based argument as to why the promises of ‘normal’ life post-transplant should be challenged; see also Crowley-Matoka and Lock (2006) for the uneven effects of transplantation throughout the globe.

The first cadaveric kidney transplant (rejected ten months later) was conducted in the United States in 1950, building on experiments with transplanting grafts of animals that had begun in the 1900s. See Manderson (2011).

This raises one of the many paradoxes and contradictions of biomedicine that can be seen in the realm of transplantation, analyzed by Lesley Sharp (2006). On the one hand, the justification for transplantation is premised on a strict division between an individual's person and his or her body parts: the recipient is told that receiving another person's organs will not alter his or her personality, or sense of self. And, as we saw in the case of brain-dead patients, US clinicians separate the ‘departed person’ from the mechanically assisted, biologically alive body. On the other hand, bodies and persons are thought to be intertwined: bereaved family members of brain-dead patients in North America are encouraged to think of their loved one as ‘living on’ through her body parts, in the lives of others. And in the case of the living donor, the ‘psychological benefit’ is said to (medically and bodily) compensate for the risks of surgical intervention. See also Manderson (2011) for how this works in the Australian context.

As Lock (2002) details, an ad hoc committee on brain death at Harvard in 1968 paved the way for a shift in clinicians’ reliance on cardiopulmonary criteria as the sole criteria for determining death, and allowed also, in rare cases, accepting neurological criteria to declare death. The neurological criteria apply only to an estimated one percent of people whose total brain function has irreversibly stopped while their remaining vital organs remain relatively intact. Most people who die in such circumstances are victims of automobile accidents or gunshot wounds to the head.

Among a minority of ethicists and transplant surgeons, however, has been a growing concern about the risks to living donors and the claims that donation is “perfectly safe.” See for example, Ross, Siegler, and Thistlethwaite (2007), a piece written by two ethicists and a transplant surgeon and others who call for the need for research on the long-term health effects of living kidney donation (Ellison et al. 2002; Ramcharan and Matas 2002).

For an academic treatment on the connection between Egypt's political regime and poor water quality, see Sowers (2007). For reports in the press on the ‘water wars’ of 2007, involving villagers’ mass protests against poor water quality and access, see Durrah (2007), ‘Arafa (2007), and ‘Abd al-Hafiz, Abu-Zayd, and Nafi‘ (2007).

There are legitimate bases of these fears, as demonstrated by early population-based epidemiological studies that have assessed risk factors among first-degree relatives of end-stage kidney disease patients (Gouda et al. 2011).

Japanese women also had significantly higher life expectancy, and lower rates of heart disease, osteoporosis, and breast cancer than US women (Lock 1993).

People who rely on organ sellers shift the medical risk to family member to a nonrelative; however in this article I refer to views of poor patients who did not pursue transplantation as a treatment.

Again, from within the Euro-American transplant community, several are now voicing concern about the long-term effects of living donation (Ross et al. 2007; Ellison et al. 2002).

Additional information

Notes on contributors

Sherine F. Hamdy

SHERINE F. HAMDY is Assistant Professor of Anthropology at Brown University and author of Our Bodies Belong to God: Organ Transplants, Islam, and the Struggle for Human Dignity in Egypt (UC Press, 2012). Her research interests lie at the intersections of the production of medical and religious knowledge.