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Assessing the Likely Harms to Kidney Vendors in Regulated Organ Markets a

Julian Koplin a

Monash University Published online: 17 Sep 2014.

Click for updates To cite this article: Julian Koplin (2014) Assessing the Likely Harms to Kidney Vendors in Regulated Organ Markets, The American Journal of Bioethics, 14:10, 7-18, DOI: 10.1080/15265161.2014.947041 To link to this article: http://dx.doi.org/10.1080/15265161.2014.947041

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Assessing the Likely Harms to Kidney Vendors in Regulated Organ Markets Downloaded by [University of Colorado at Boulder Libraries] at 16:09 21 December 2014

Julian Koplin, Monash University Advocates of paid living kidney donation frequently argue that kidney sellers would benefit from paid donation under a properly regulated kidney market. The poor outcomes experienced by participants in existing markets are often entirely attributed to harmful black-market practices. This article reviews the medical and anthropological literature on the physical, psychological, social, and financial harms experienced by vendors under Iran’s regulated system of donor compensation and black markets throughout the world and argues that this body of research not only documents significant harms to vendors, but also provides reasons to believe that such harms would persist under a regulated system. This does not settle the question of whether or not a regulated market should be introduced, but it does strengthen the case against markets in kidneys while suggesting that those advocating such a system cannot appeal to the purported benefits to vendors to support their case. Keywords: Organ transplantation, health policy, international/global health

As the demand for transplantable kidneys has increasingly exceeded supply throughout most of the developed world, a growing number of philosophers, bioethicists and members of the transplant community have proposed marketbased solutions to growing waiting lists. Although transplantation societies and international bodies continue to denounce transplant commercialism (Delmonico 2009), the near-universal condemnation of financial incentives in the early days of organ transplantation is increasingly under challenge as waiting lists continue to grow despite increasing efforts to boost supply. As anthropologist Donald Joralemon observed in a 2001 analysis of transplant professional’s attitudes toward compensation plans, A vehement rejection on ethical grounds of anything but uncompensated donation—once the professional norm—has slowly been replaced by an open debate of plans that offer financial rewards to persons willing to have their organs, or the organs of their deceased kin, taken for transplantation. (Joralemon 2001, 30)

While most of these plans involved cadaveric donation, since 2001 an increasing number of proposals for allowing living donor kidney sales have appeared in law, philosophy, and bioethics journals, the opinion pages of newspapers including the New York Times and the Washington Post, and prestigious medical journals such as The Lancet and the British Medical Journal. A growing number of ethicists and members of the transplant community believe that regulated systems of kidney selling are ethically acceptable—or even “morally imperative” (Taylor 2005).

Most proponents of kidney sales argue that compensated donation will not only help patients languishing on the waiting list, but also substantially improve the wellbeing of those who sell a “spare” kidney. In an influential paper for the International Forum for Transplant Ethics, Radcliffe-Richards and colleagues (1998) argued that since vendors themselves must believe that vending is the best option available to them, prohibition harms potential vendors as well as patients on the waiting list. Accordingly, Richards (1996, 377) has marveled that “our indignation on behalf of the exploited poor seems to take the curious form of wanting to make them worse off still.” Veatch (2003) has reversed his long-held opposition to financial incentives on the grounds that the United States had failed to substantially improve the standard of living for the very poor, and lifting prohibition opens one method for the impoverished to address their needs. Even many scholars with reservations about the commodification of bodily organs accept the claim that sellers will benefit. Radin (1996, 123–126), for example, has argued that organ markets involve a “double bind” where commodifying body parts risks damage to personhood, yet prohibiting such exchanges simply reinforces the powerlessness of wouldbe sellers. The benefits of kidney sales to vendors, then, are widely seen as an important, if not a decisive, factor in favor of instituting organ markets. This enthusiasm for organ sales stands in stark contrast to the opposition of those who have undertaken anthropological or scientific research on the consequences of kidney vending. Nancy Scheper-Hughes, an anthropologist who has undertaken extensive research on organ trafficking,

Address correspondence to Julian Koplin, Centre for Human Bioethics, Monash University, VIC 3800, Australia. E-mail: julian. [email protected]

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has scathingly referred to the field of bioethics as the “handmaiden of free market medicine” (Scheper-Hughes 2008a, 115). She has criticized both it and the profession of transplant medicine for “capitulat[ing] to the dominant market ethos” in their endorsement of kidney sales (Scheper-Hughes 2004, 61). Moazam, Zaman, and Jafarey, three physicians who undertook an ethnographic study of kidney vendors in Pakistan, have likewise criticized international discussion of organ commerce for failing to take into account the lived experiences of vendors and their families, as well as broader ramifications for the patient– physician relationship and societal ethos (Moazam et al. 2009, 41–42).1 Numerous researchers working in countries including Iran (Zargooshi 2001b), Bangladesh (Moniruzzaman 2010), and Egypt (Budiani-Saberi and Mostafa 2011) object to regulated kidney markets on similar grounds. Yet according to some proponents of kidney sales, arguments based on research conducted in existing markets are ultimately specious. One common rejoinder holds that there is no intrinsic difference between the risks of organ donation and the risks of organ sale, and therefore poor outcomes for vendors must be the result of black-market abuses such as fraud, coercion, careless medical practice, the absence of follow-up care, and the impossibility of legal redress (Hippen 2005, 610–614; Matas et al. 2008; Richards 1996, 386; Richards 2012; Taylor 2005, 87–89; Taylor 2006; van Dijk and Hilhorst 2007, 36; Wilkinson 2011, 179–182). Taylor (2006) selects the following quote from ScheperHughes as a representative example of this purportedly failed argumentative strategy: . . . The disenchanted sellers aired many complaints: the loss of work, of income, of strength, and of social standing. They reported chronic pain, weakness, anxiety, depression, family discord, as well as medical problems, all attributed (by them) to their kidney removals. . . . Cicero said “My broker said I would be healthier with just one kidney” . . . Geremias interjected, “Well, they treated me OK until they got what they wanted. Then I was thrown away like lixo [garbage]. . . (Scheper-Hughes 2005, 1349)

Taylor interprets this argument as follows: We should oppose regulated markets in organs because vendors who sell their kidneys on the black market are subjected to fraud and coercion and therefore suffer adverse effects to their physical, psychological, social, and financial wellbeing. According to Taylor, this argument falsely assumes that legalized organ markets would replicate these practices. Taylor offers a simple but powerful response: Since vendors in a regulated system would enjoy legal protection against these abuses, the proportion of vendors coerced or defrauded will presumably decrease (Taylor 1. This is not to suggest that the prevailing framework under prohibition in Pakistan is entirely benign. Moazam (2006) explores some of the ethical challenges posed by a social context that emphasizes obligations to others rather than donors’ rights and autonomy.

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2006). In much the same way, Richards (2012, 55) has responded to the concern that vendors would experience significant harms by pointing out that fraud, poor screening, and poor medical care and aftercare seem characteristic of unregulated black markets, not of regulated ones. As the Working Group on Incentives for Living Donation (2011, 307) has stated, We are fully cognizant of the harms that have occurred with unregulated markets. . . . However, there are no data to suggest that similar harms would occur in a carefully controlled, transparent and regulated system of incentives.

The claim that regulated systems of organ sales can reduce black market abuses is certainly plausible,2 but focusing narrowly on these practices is misleading. Taylor’s construal of Scheper-Hughes’s argument, Richards’s point regarding the dangers of unregulated markets, and promarket arguments regarding harm to vendors in general conflate two related yet distinct concerns: first, that vendors endure a range of harms they attribute to the sale of their kidney, and second, that vendors are deceived, coerced, or treated poorly by organ brokers. I argue that eliminating abusive black-market practices may not eliminate vendors’ poor outcomes by demonstrating that some of the harms vendors experience may persist even under a well-regulated system. Empirical research on kidney sellers’ outcomes not only documents a range of harms to physical, psychological, social, and financial well-being, but also provides reason to worry that a regulated system would reproduce many of these harms. I draw attention to a range of concerns proponents of kidney selling have often overlooked: that the risks of nephrectomy may be greater for the desperately poor than the relatively affluent; that providing follow-up care does not guarantee vendors will receive it; that many sellers face depression, anxiety, stigma, and social isolation as a consequence of the sale; and that receiving the promised payment in full does little to protect against long-term difficulties of finding and maintaining employment. Any conclusions drawn from the extant literature on kidney markets must be tentative, given the scarcity of research on the international organ trade, and especially on the effects of commercial living organ donation on vendors. As a 2007 World Health Organization survey of organ trafficking literature concluded, it is only possible to create a “provisional and tentative” picture of the international organ trade until further research has been conducted (Shimazono 2007, 960). Especially notable was the complete absence of medical data on the health status 2. However, some critics of incentivized donation in Iran and the Philippines have alleged that regulations have been poorly enforced and widely flouted (Padilla et al. 2012; Zargooshi 2008). Zargooshi acknowledges that his argument relies on the validity of his references, most of which are drawn from a single organization and are not available in English, and recommends that independent fact-finding committees verify the accuracy of his claims.

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of paid kidney donors (Shimazono 2007, 958), a gap in the literature that has since received only slight attention. The sheer difficulty of conducting research among kidney sellers may be largely responsible for this neglect; Moniruzzaman (2010, 48), an anthropologist who has worked with kidney sellers in Bangladesh, has noted that vendors are “extremely inaccessible because of their invisibility, their concealment for highly stigmatized behaviour, and their participation in criminal behaviours.” There is a country bias in the extant research that has been conducted, and little is known about vendor populations in countries and regions including China and South America (Sajjad et al. 2008, 751). Finally, as Iran is the only country to implement a regulated system of paid donation, much of the research this article draws on examines black markets in kidneys. It is true that the scarcity of data and the confounding factors at play in illicit kidney markets render this body of research less than ideal for predicting vendor outcomes in a regulated market. Nonetheless, elements of this research provide reasons to worry that vendors’ outcomes in a regulated market will be less positive than market proponents assume. While my conclusions are tentative, and while more research on the subject is desirable, I argue that the available evidence on current kidney markets cumulatively suggests that kidney sellers typically experience negative effects across the spectrum of physical, psychological, social, and financial well-being, and that these effects may not be entirely reducible to black-market abuses. The final section of this article examines the implications of this line of reasoning and considers a number of objections.

ORGAN VENDORS’ HEALTH While market proponents recognize that kidney selling does pose some risks to vendors, these risks are defined primarily in terms of the posttransplant morbidity and mortality associated with kidney donation, which are considered insufficient to warrant prohibition. The data used to define these health risks are necessarily drawn from studies of relatively affluent donors in the developed world, as there is little medical data on the long-term effects of organ removal for the poor.3 In a well-known argument advocating kidney markets, Dworkin (1994, 157) argued that prohibiting kidney markets on the grounds of risk implies that service in the army and hazardous occupations such as high steel construction should also be banned, a suggestion he finds worryingly paternalistic. In an extension of this argument, Taylor (2005, 125–127) has found that the risks of death or 3. The absence of longitudinal studies of the effects of nephrectomy among the urban poor has been highlighted by ScheperHughes (2002, 77; 2008a, 118). The risks of kidney selling have been explicitly defined in terms of the risks with kidney donation in affluent nations by Matas (2008) and Taylor (2005, 125–132).

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perioperative complications posed by nephrectomy are less than, or comparable to, the risks posed by dangerous occupations such as scaffolding, steel erecting, and roofing. While nonfatal harms may be more common among organ donors, Taylor argues that even by the highest estimates this is not by a significant enough a degree to justify prohibiting kidney sales but not other forms of dangerous employment (Taylor 2005, 130). However, the available literature shows that kidney sellers in existing markets experience substantially worse health outcomes than the data on kidney donors would lead us to expect. A study of the health status and renal function of 104 Pakistani kidney vendors found poor overall health status, and a high rate of hypertension and compromised renal function, suggesting that vendors are at risk of renal impairment and failure in the long term (Naqvi et al. 2008). An unpublished study involving 135 Filipino kidney vendors revealed similarly poor results (Tanchanco et al., cited in Padilla 2009, 122), while a smaller study of 32 Moldovan victims of organ trafficking found a substantial incidence of chronic kidney disease and hypertension (Codreanu, Codreanu, and Delmonico 2010). Scheper-Hughes (2008b, 43) has found that many kidney sellers from Moldova, Brazil, and the Philippines endure postoperative complications including hypertension and kidney insufficiency (Scheper-Hughes 2008b, 43), and argued more generally that vendors in the developing world experience health risks incomparable with altruistic, First-World donors (Scheper-Hughes 2002, 77) Vendors also report subjective experiences of suffering far greater than that of altruistic donors in the developing world. Goyal and colleagues’ cross-sectional survey of 305 Indian kidney vendors and Zargooshi’s survey of 300 Iranian vendors—with 100% and 97% participation rates, respectively—document this anomaly. Of the Indian vendors, 86% of participants reported a decline in health status, 50% complained of persistent pain at the nephrectomy site, and 33% complained of long-term back pain (Goyal et al. 2002, 1591). Similarly, 90% of Iranian vendors believed vending had a negative impact on their general health and well-being (with 58% believing it had a very negative impact), 60% reported some form of chronic postoperative pain, and 89% reported a negative effect on physical abilities, with 60% believing it had a markedly negative effect (Zargooshi 2001b, 1797–1798). Their perceptions of general health, physical functioning, and vitality were significantly lower than for controls who underwent nephrectomy for other reasons (Zargooshi 2001b, 1791). Subsequent studies conducted throughout the developing world parallel these findings. A 2006 study of 239 Pakistani vendors revealed that 98.8% believed that their health had declined in some way since nephrectomy (Naqvi et al. 2007, 936). A subsequent study of 104 Pakistani vendors found that a far higher proportion of vendors than donors expressed postnephrectomy complaints such as physical weakness (68.3% compared to 2.1%) and ongoing pain at the site of the surgery (58.7% compared to 11%) (Naqvi et al. 2008, 936). Quantitative

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research conducted in the Philippines (Mendoza 2011, 4) and Egypt (Budiani-Saberi and Mostafa 2011, 4), as well as ethnographic studies carried out in Bangladesh (Moniruzzaman 2010, 300–303) and Pakistan (Moazam et al. 2009), likewise report vendors’ perceptions of poor health and difficulty performing labor-intensive work. The health impacts of kidney selling appear to far exceed the negligible health impacts associated with kidney donation. According to proponents of regulated systems of kidney selling, however, such findings tell us nothing useful about what might happen in a regulated market. Poor health outcomes are seen as indications of substandard selection criteria, organ traffickers’ lack of concern for vendor well-being, and the absence of adequate follow-up care—all problems that market regulations could remedy. This explanation both undermines the argument that vendors are likely to experience poor health outcomes in regulated systems of organ selling and offers a further reason to support such systems: because of their potential to displace these harmful black-market practices (Hippen 2005, 610; Hippen 2008, 15; Radcliffe Richards 2012, 55; Taylor 2005, 87–89, 115; Taylor 2006; Wilkinson 2011, 179–181; Working Group on Incentives for Living Donation 2012). Although this response is prima facie plausible, it overlooks the possibility that the long-term health risks of nephrectomy would still differ between relatively affluent organ donors and the impoverished groups likely to serve as vendors, especially those in the developing world. As Budiani-Saberi and Mostafa (2011, n. 3) argue, socioeconomic status may affect risk: Even in the best circumstances, these surgeries involve risks and longitudinal research on the long-term effects of live organ donation in any country is scarce. Parting with a kidney is significantly more difficult when donors do not have clean water or sufficient nutrition and rely on labour-intensive work to generate income.

Scheper-Hughes (2002, 77) has noted the same problem: Living kidney donors from shantytowns, inner cities, or prisons face extraordinary threats to their health and personal security through violence, accidents, and infectious disease that can all too readily compromise their remaining kidney.

The health outcomes of vendors might not equal those of donors, even if the implementation of selection criteria and follow-up care is successful. Furthermore, achieving success on these fronts may not be easy; payment provides a significant incentive to conceal contraindications to donation. Prospective vendors in the Philippines’ compensated organ donation program, for example, have attempted to circumvent selection criteria by concealing hypertension and other illnesses by taking antihypertensive medications, submitting others’ urine, and dishonestly reporting medical history (Padilla 2009, 122).

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Ensuring that kidney vendors actually receive the follow-up care offered to them poses even greater challenges. Many vendors in existing markets are either unwilling or unable to return to transplant centres for follow-up care, even when it is provided. Scheper-Hughes (2003a, 220) has described how Organs Watch had to coax Moldovan kidney sellers into agreeing to basic medical care at the organization’s expense. The shame and stigma experienced by vendors and an unwillingness to disclose their paid “donation” to doctors appear to be contributing factors. None of the Brazilian, Turkish, Moldovan, or Filipino vendors interviewed by Organs Watch had seen a doctor in the first year since their operation. Scheper-Hughes (2003b, 1647) attributes this largely to vendors’ unwillingness to reveal themselves as a kidney seller at a public clinic and their fears that seeking medical attention will cause potential employers, family members, and potential romantic partners to perceive them as weak or disabled. Some of the Bangladeshi vendors interviewed by Moniruzzaman (2010, 301) likewise reported avoiding checkups in order to avoid disclosing the sale to doctors, while the majority of Egyptian vendors offered free follow-up care by the transplant centers where the operation was performed also chose not to receive it (Budiani-Saberi and Mostafa 2011, 6). While poor follow-up attendance could partly reflect vendors’ fear that their participation in an illegal activity would be discovered and prosecuted, it has not only been documented in black markets. In one Indian program operating prior to the prohibition of kidney sales, only 20% of vendors returned for the provided follow-up care (Reddy 1991, 176) Furthermore, when Zargooshi’s study team attempted to contact Iranian vendors, they discovered that 95% had given the hospital an unclear or false address. After contacting the vendors through other means, this was determined to reflect the sellers’ unwillingness to be identified as vendors (Zargooshi 2001a, 386). Kidney sellers’ distrust of, and hostility toward, medical professionals may also play a role. Research undertaken by Organs Watch in India, Turkey, the Philippines, and Eastern Europe found that vendors formed hostile, resentful, and in some cases murderous attitudes toward the doctors and surgeons who removed their kidneys (Scheper-Hughes 2003b, 1646). Many Pakistani vendors interviewed by Moazam and colleagues expressed a sense of victimization by the medical profession, and some remarked that they would never return to the hospital. Vendors saw hospitals and their staff as “in the business of theft,” and one described how the hospital had “sucked out all my blood” and “[sent] us home after turning us into corpses” (Moazam et al. 2009, 35). Vendors in Iran have expressed similar sentiments, with one claiming that he would not return to the hospital for checkups because “after vending, I hate hospitals and their personnel” (Zargooshi 2001b, 1792). In Egypt, the majority of vendors offered follow-up care by a transplant centre did not attend after becoming convinced that the center would not serve their best interests, convictions Budiani-Saberi and Mostafa (2011, 6) fear vendors in a regulated market would

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share. How regulated systems of organ selling would avoid these problems is far from obvious, yet few advocates of organ markets have seriously considered them. In short, research drawn from existing organ markets suggests that kidney vendors run greater risks than donors do. While proponents of organ sales argue that a regulated system would not replicate these outcomes, the uncertain relationship between socioeconomic status and the longterm consequences of nephrectomy, and the reluctance of vendors to receive follow-up care, are worrying. These concerns are most salient to proposals for establishing markets in the developing world. However, even in the developed world, the absence of any longitudinal studies on the effects of nephrectomy on the very poor is of concern (Scheper-Hughes 2002, 77; Scheper-Hughes 2008a, 118), as is the prospect of vendors avoiding follow-up care.

THE PSYCHOLOGICAL AND SOCIAL CONSEQUENCES OF VENDING Proponents of kidney selling often portray the psychological effect of commercial organ transplant as a slight, compensable harm or even a benefit in its own right. For Reddy (1991, 176), the principle that organ donation is justifiable only if donors receive significant emotional benefits is consistent with paid donation, at least in some cultural contexts. Reddy argues that because Indian vendors sell their kidneys to fulfill responsibilities to their families, they should experience deep emotional satisfaction equivalent to that of altruistic donors. Richards (1996, 889) has suggested that this would be equally true of Western vendors: If some of the unemployed could get a large sum of money and start again, supporting their families instead of living on the dole, would there be anything but a huge increase in their self-respect, and the respect of others?

Satel (2008, 68) similarly argues that paid donors would earn the admiration of the wider community through putting themselves at risk for the benefit of renal failure patients. According to these accounts, kidney selling can provide vendors with social and emotional benefits. Empirical and ethnographic research on this subject, however, suggests the opposite. According to a recent thematic synthesis of qualitative research on the subject, desperation, despair, and debasement are characteristic of kidney selling: Three major themes were identified: desperation (the participants’ decision to sell their kidney was forced by poverty, debt, or to fulfil a family obligation); despair (destroyed bodily integrity, shame and secrecy, dehumanized and dispirited, loss of livelihood, heightened sense of vulnerability, disappointment, and regret); and debasement (deception by brokers and recipients, victimized by the hospital, stigmatized by community, and rejected by family). (Tong et al. 2012)

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More than 50% of the 32 Pakistani vendors interviewed in Moazam and colleagues’ ethnographic study experienced profound levels of anxiety and a sense of hopelessness about life, as judged by a simple psychological test developed by the World Health Organization (Moazam et al. 2009, 34). Vendors believed these feelings originated post nephrectomy, and also commonly experienced a range of overlapping negative emotions: regret and remorse, often grounded in perceptions of the intrinsic “wrongness” of selling organs; constant fears related to living with only one kidney; and a sense of feeling incomplete—like “half a man”—after the surgery (Moazam et al. 2009, 33–35). Many family members commented that vendors become quiet and withdrawn after returning from their operation, and some reported that the vendors frequently experienced insomnia and night terrors, or simply wept throughout the night (Moazam et al. 2009, 35–38). Moniruzzaman (2010, 361–363) noted similar mental preoccupations among Bangladeshi vendors, who typically encountered severe psychological problems such as anxiety, distress, depression, and trauma. They felt deep sadness, feared imminent death, and worried about how Allah would judge them for selling “his gifts” (Moniruzzaman 2010, 304–311). Like the vendors interviewed by Moazam and colleagues, they experienced their postnephrectomy bodies as damaged, disordered, and fragmented (Moniruzzaman 2010, 361– 363). In Egypt, in-depth interviews with vendors conducted by the Coalition for Organ-Failure Solutions (COFS) have revealed that “shame, psychological isolation, guilt and fear are . . . salient features of [vendors’] long-term experiences” (Budiani-Saberi and Mostafa 2011, 4). As one Egyptian vendor put it, “the payment could not be enough to live the rest of your life without your kidney, especially when it is for someone you do not know” (Budiani-Saberi and Golden 2009, 1). These difficulties are compounded by the stigma and social isolation vendors face. Scheper-Hughes (2008b, 43) has found that many vendors in Moldova, Brazil, and the Philippines are excommunicated from their churches and excluded from marriage. In Egypt, 90% of vendors felt socially isolated, 81% were unwilling to be known as organ sellers, and 71% did not tell anyone about their nephrectomy (Budiani-Saberi and Mostafa 2011, 4; see also Budiani-Saberi 2007). Similarly, the Bangladeshi vendors interviewed by Moniruzzaman (2010, 283–287) continually tried to hide their scars after returning home—even from their families—leaving vendors to live, as Moniruzzaman (2010, 305) has put it, “like prisoners, socially isolated.” This stigma and isolation, and the attendant effects on vendors’ mental and emotional well-being, are far removed from the increased respect, self-worth, and psychological well-being advocates of organ markets expect. The effects of stigma are not limited to the individual seller. Vendors’ children have been taunted as “onekidneys” or sons of kidney sellers (Cohen 1999a, 140; Scheper-Hughes 2008b, 43), while whole communities in India and Moldova have been stigmatized by demeaning labels such as “kidneyvakkam” or “one-kidney village”

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(Jimenez and Scheper-Hughes 2002). According to journalist Scott Carney (2011, 62–63), when a representative for a poor refugee camp used testimony from kidney sellers in an effort to attract much-needed aid from the Indian high courts, he almost provoked riots from individuals who thought he had “shamed the entire village” and “dishonoured the women of the village.” It could be argued that establishing a legal market might itself mitigate these psychological effects by bringing markets into the open, thereby fostering acceptance of kidney selling. The results from Iran, where a regulated system has operated since 1988, are therefore especially noteworthy. According to Zarooshi’s study of Iranian vendors’ quality of life, vendors scored significantly lower than a control group across all eight measures of well-being in the SF-36 Health Survey. Seventy-one percent of participants had severe de novo postoperative depression, 60% experienced anxiety, and several were suicidal (Zargooshi 2001b, 1790). Thinking about vending provoked feelings of sadness and depression (90%), lonesomeness (92%), embarrassment and shame (81%), worthlessness (70%), emptiness (40%), and regret (97%) (Zargooshi 2001b, 1798). A separate study found that Iranian vendors have lower quality of life scores than community norms across all four domains: physical, psychological, social, and environmental (Nejatisafa et al. 2008). Vendors typically regretted their sale, with 85% stating that they would not repeat it with their current knowledge, and almost half agreeing that they would sacrifice more than 10 years of their life and forfeit 76–100% of their properties to regain their absent kidney and preoperative condition (Zargooshi 2001b, 1790). As one participant put it, “We are at zero level. This life does not deserve living” (Zargooshi 2001b, 1791). The social effects of vending are likewise comparable; 94% of Iranian vendors were unwilling to be known as vendors and 70% felt socially isolated. Furthermore, vendors usually concealed their sale outside of first-generation relatives, and often even from immediate family. Families were usually not supportive of the decision to sell a kidney; 68% of families strongly disagreed with vending, and 73% of vendors experienced increased marital conflicts (Zargooshi 2001b). Two recent Iranian studies appear to provide contradictory evidence. A 2007 multicenter study of 478 Iranian vendors found that 91% were satisfied with their “donation” and 53 percent suggested “donation” to others. The authors of the paper assumed that the government payment and optional “gift” from recipients would have a moderate beneficial effect on vendors’ economic status (Malakoutian et al. 2007). These promising results play a key role in Hippen’s case for implementing a variant of the Iranian model in the United States (Hippen 2008, n. 38). Furthermore, a 2009 study of 600 Iranian donors found that at the time of discharge only 1.5% of donors regretted their decision (Rouchi et al. 2009). The discrepancy between this study and others, in Iran and elsewhere, could simply be due to differences in methodology. While

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the participants in Zargooshi’s study of vendor outcomes were interviewed at least 6 months postoperatively (Zargooshi 2001b, 1790), Malakoutian and colleagues (2007) interviewed participants before donation, while Rouchi and colleagues (2009) utilized surveys completed before discharge. Observing that vendors are hopeful or satisfied in these early stages says little about vendors’ long-term outcomes. Moniruzzaman’s ethnographic work juxtaposes the hopefulness of Bangladeshi sellers in the preoperative stage of their journey with their eventual regret (Moniruzzaman 2010), while Cohen (1999, 141) has written on how, with time, vendors’ nephrectomy scars function as a symbol of unmet hopes: “At some point the money runs out and one needs credit again, and then the scar covers over the wound not of a gift but of a debt.” It could be argued that even if vending a kidney is psychologically distressing, prohibiting the desperately poor from selling a kidney itself inflicts psychological harms by preventing people from improving their financial circumstances or that of their family. Under this view, leaving potential vendors in dire poverty could prove equally or more psychologically harmful than the social stigma, shame, or regret sellers experience.4 This argument could be met in two ways. First, the psychological harms of prohibition could be more accurately described as the harms of poverty or indebtedness. It is not clear why these harms should be attributed to the prohibition of organ markets specifically, rather than to factors that contribute more directly to vendors’ poverty, such as the failure of existing social policy measures to improve the situation of the desperately needy. Second, this argument assumes that vendors would typically achieve their goals. However, as I argue in the following section, this may not be the case.

ECONOMIC STATUS Despite the harms just outlined, proponents of regulated markets could still argue that payment could compensate for these harms and provide a net benefit for vendors’ overall well-being. Crucially, this argument depends on vendors experiencing financial benefits, especially in the long term. However, the available evidence from existing research suggests that these benefits rarely eventuate. Several quantitative studies have established that the overwhelming majority of kidney vendors chose to sell an organ in the hopes of escaping debt, yet only a small minority achieved this goal (Budiani-Saberi and Mostafa 2011; Goyal et al. 2002; Mendoza 2010a; Mendoza 2010b; Tanchanco et al., cited in Padilla 2009, 122; Naqvi et al. 2007; Zargooshi 2001a). Instead, vendors typically find that the long-term negative effects of vending reverse any short-term benefits. In their study of Indian vendors, Goyal et al. (2002) found that despite economic improvement in the region, average family income was reduced by an average of one-third between the time of nephrectomy and 4. I thank an anonymous reviewer for raising this point.

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participation in the study, with increased time since nephrectomy positively correlated with a greater decline in economic status. Of the Iranian vendors interviewed by Zargooshi (2001b, 1298), 66% rated the financial effects of vending as “very negative” and a further 22% rated it as “somewhat negative,” while 0% reported “very positive” effects. Only 5% felt that they completely met their goals from vending (Zargooshi 2001a). Two separate studies of Filipino vendors, involving 311 and 131 participants, found that only 41% and 35% of vendors felt that their economic prospects or financial condition had improved (Awaya et al. 2009, 142; Mendoza 2011, 259). Similarly, 85% of surveyed Pakistani vendors recorded no economic improvement (Naqvi et al. 2007, 936), and more than 80% of Colombian vendors believed that the sale resulted in neither material nor lifestyle improvements (Mendoza 2010a, 379). Remarkably, none of the 96 vendors interviewed by the Coalition for Organ-Failure Solutions in Egypt believed that the sale improved their economic situation (Budiani-Saberi and Mostafa 2011, 4). In short, kidney sellers typically do not succeed in overcoming debt, but instead suffer a long-term decline in their financial status after parting with a kidney. Some proponents of organ sales argue that these poor outcomes only bolster their case. After noting that the results of Goyal and colleagues’ study appears to indicate that kidney sales compromise vendors’ economic status, Taylor argues that this conclusion is too hasty: fraud is endemic in the black market as vendors have no legal recourse against purchasers who fail to compensate them in full. Accordingly, Taylor traces the adverse economic consequences of kidney selling to brokers fraudulently paying vendors less than promised (Taylor 2010, 151; Taylor 2005, 88–89; Taylor 2006). Many vendors in black markets, and even in Iran’s regulated system, are commonly paid less than promised (Goyal et al. 2002, 1591; Moniruzzaman 2010a, 279–323; Naqvi et al. 2007, 936; Zargooshi 2001a, 388). However, receiving the full amount appears to have little impact on vendors’ long-term prospects. While the vast majority of the 169 Colombian vendors and 131 Filipino vendors surveyed by Mendoza received the full payment, only 21% of the Colombian vendors and 35% of the Filipino vendors felt that the payment had improved their economic condition (Mendoza 2010a, 380; Mendoza 2010b, 259). Likewise, the majority of the Bangladeshi vendors interviewed by Moniruzzaman (2010, 287–300) did not benefit financially regardless of whether they received the full payment. The prevalence of fraud in the black market provides at most a partial explanation for vendors’ long-term decline in economic status. Research on the experiences of Filipino kidney sellers provides a particularly clear demonstration of how vending can disadvantage sellers in the long term. In the Philippines, vendors most commonly worked as farmers, fishers, drivers of public utility vehicles, stevedores, and construction workers, whilst the poorest

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vendors were street peddlers, temporary laborers, or beggars (Mendoza 2010b, 257). Half of the 15 participants in Yea’s ethnographic study reported that their physical strength had declined by around 50%, and all but one reported becoming weaker and tiring more easily. As all but one worked in jobs that required physical strength or stamina, their ability to work was compromised (Yea 2010, 369–370). Similarly, of a survey of 121 Filipino vendors, 61.3–69.3% of vendors reported lingering health issues in performing laborintensive work (Mendoza 2011, 4). Moreover, even when vendors do not experience these health effects, employers’ perceptions of the health of vendors can make finding work even more difficult. Several Filipino sellers revealed that they felt forced to conceal their surgery to potential employers in construction and shipyard working, as they believed they would not be hired if the details of their nephrectomy became known (Yea 2010, 370). As Rothman and Rothman (2006, 23) observed of Filipino kidney sellers from Manila slums: When asked about their health, the men complained of a variety of pains and disabilities. When asked about their economic condition, many of them said they were worse off. Before they sold their kidneys, they had typically worked at loading ships on the docks. After the sale, they were no longer physically able to do the heavy lifting required, or they had been summarily fired because their bosses thought they were no longer able to do it.

These findings are echoed in by studies conducted in Iran, Egypt, and Pakistan, which likewise suggest that reduced stamina and strength cripple vendors’ employment prospects (Zargooshi 2001b; Naqvi et al. 2007; Budiani-Saberi 2007). Only 2 of the 33 Bangladeshi vendors interviewed by Moniruzzaman (2010, 353) believed that they had improved their economic condition by selling a kidney, while 48% lost their jobs post vending and were still unemployed at the time of the study and 30% worked fewer hours in different jobs as a result of their declined health. Scheper-Hughes (2008a, 118) has reported that sellers in Moldova, Brazil, and the Philippines are left “weakened, sick, and unemployable because they are unable to sustain the demands of heavy agricultural or construction work, the only labor available to men of their skills.” Even among altruistic donors in the developed world, a small proportion of donors attribute cessation of employment at physically demanding jobs to physical limitations caused by the surgery (Clarke et al. 2006, 1957). The problem is compounded when paid “donors” who depend on physical strength and stamina in their employment are used instead. For vendors, the physical effects of nephrectomy, psychological effects of depression, and social effects of stigma all undermine the ability to find and maintain employment, reversing any short-term financial gains.

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CONCLUSIONS, IMPLICATIONS, AND POSSIBLE OBJECTIONS Almost every study that has asked the question has found that the majority of vendors regret selling a kidney and/or would not recommend doing so to others (Awaya et al. 2009; Goyal et al. 2002; Mendoza 2010a, 380; Moazam et al. 2009, 22–23; Moniruzzaman 2010, 320; Naqvi et al. 2007, 936–937; Tanchanco et al., cited in Padilla 2009, 122; Zargooshi 2001b). Moreover, a study of 100 Iranian donors (97 of whom were vendors) found that 76% were in favor of banning kidney sales (Zargooshi 2001a). According to vendors’ own accounts, selling a kidney left them worse off physically, psychologically, socially, and financially. In the face of this body of research, and in the absence of compelling reasons to believe that such outcomes are entirely attributable to black-market abuses, the ubiquitous claim that regulated systems of kidney selling would improve vendors’ well-being lacks evidential warrant. The available research, despite its limitations, suggests the opposite: that vendors will usually experience a range of significant harms that ultimately leave them worse off than before the sale. Given the limitations of existing research on vendor outcomes, and particularly the scarcity of controlled studies in regulated contexts, it could be argued that this article’s conclusion is premature—that instead of relying on evidence from existing markets, we should conduct pilot programs and clinical trials (Hippen and Matas 2009). My argument here, however, is limited to what conclusions we should draw from the available literature; it therefore neither rules out nor entails support for conducting clinical trials. Like all empirical arguments, it is open to revision in the light of new research. However, unless new evidence is produced, market proponents’ confidence that a regulated market in kidneys would benefit vendors is unwarranted. It could be objected that even if establishing a regulated market does not entirely eliminate harms to vendors, doing so may be justifiable as a form of harm minimization. Although organ trafficking is illegal throughout the world, black markets in kidneys are nonetheless flourishing; the World Health Organization estimates that 10% of all solid organ transplantation involves black markets (Campbell and Davison 2012). As prohibition has manifestly failed to curb the trade, a regulated market could prove the lesser of two evils.5 However, even if we assume that market regulations can be effectively enforced in contexts where prohibition has not been, it is not clear that organ trafficking (and its attendant harms) cannot be addressed by other means. Scheper-Hughes (2013) describes organ trafficking as “still not treated with the seriousness it demands” and argues that professional medical sanctions against surgeons who participate in the trade could prove more effective than exclusively focusing on traffickers. Delmonico and Bagheri 5. I thank two anonymous reviewers for raising this point.

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(2013) see potential in international agreements specifically on organ trafficking both to clarify the nature of organ trafficking and to remedy its neglect under more general antitrafficking measures, while Caplan (2014) has written on the importance of increasing supply by other means. For countries that supply transplant tourists, proposed strategies range from communicating the health risks and ethical concerns regarding organ trafficking to prospective end-stage renal failure patients (Gill et al. 2010; Gill et al. 2011) to explicitly banning the purchase of organs internationally (Budiani-Saberi and Columb 2013). For destination countries, these include remedying poor public awareness of the illegality of kidney selling (Mendoza 2010a; Mendoza 2010b), removing ambiguities and loopholes in relevant legislation and more actively monitoring compliance (Muraleedharan, Jan, and Prasad 2006; Mendoza 2010a; Mendoza 2010b), excluding commercial organ transplantation from medical tourism initiatives (Turner 2008), and offering vulnerable populations alternative means to achieve their goals, such as microcredit or affordable housing (Yea 2010, 371). Recent legal measures introduced in Israel—a source country—and the Philippines—a destination country—have succeeded in dramatically reducing participation in the international kidney trade; as Padilla, Danovitch, and Lavee (2013, 918) explain, the data from these countries show that “concentrated legal efforts can indeed result in a significant reduction in transplant tourism.” This is not to say that regulated markets could never provide the best option, but rather to highlight that regulated markets are not the only available alternative to failed attempts at prohibition. Nor is it obvious that regulated markets are the best alternative; the examples of Israel and the Philippines suggest that, at least in some contexts, well-designed models of prohibition can yield promising results. Others have argued that even if vendors’ poor health outcomes can be attributed in part to the greater health risks faced by the poor, there is a straightforward solution. If the use of poor vendors violates existing safety standards due to the association between low socioeconomic status and the development of kidney disease, we can exclude the poorest members of society from selling a kidney on these grounds (Hippen 2005, 610–611; Hippen 2006, 60–61; Working Group on Incentives for Living Donation 2012). However, limiting markets in this way raises the uncomfortable possibility that kidney markets might not substantially increase—or could even decrease—the number of kidneys available for transplantation. In the global organ trade, kidneys circulate from South to North, from East to West, from poorer to more affluent bodies, from black and brown bodies to white ones, and from female to male or from poor, low status men to more affluent men. (Scheper-Hughes 2003b, 1645)

The vast majority of Iranian, Colombian, and Filipino vendors report income below the poverty line (Malakoutian et al. 2007, 825; Mendoza 2010, 377; Mendoza 2011, 2); 69%

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of Pakistani vendors from a sample of 239 worked as bonded laborers, while a further 11% were unemployed (Naqvi et al. 2007); the majority of Egyptian vendors are illiterate and unemployed (Budiani-Saberi and Mostafa 2010, 4). Even if relatively large payments are offered, few additional vendors may be forthcoming; a recent survey of Swiss medical students found that two-thirds of those who expressed willingness to sell a kidney would only do so to overcome a particularly difficult financial situation (Rid et al. 2009). While the global trade in organs has shown that there is no shortage of potential vendors among the very poor, the number of comparatively wealthy individuals willing to undergo significant surgery for payment remains an open question. Furthermore, systems of paid donation may compromise altruistic donation. Anthropologists working in India (Cohen 1999b, 161), Israel (Jacob 2012, 64), and the Middle East (Scheper-Hughes 2009, 11) have explored how markets in kidneys reshape the way potential donors and recipients think about donation. In particular, donation between family members can become seen as inappropriate when it is possible to buy an organ from a stranger, thereby avoiding risks to loved ones and feelings of indebtedness to the donor. Consistent with this research, one Iranian study found that 81% of transplant patients selected a vendor kidney despite having a potential living related donor (Ghods, Savaj, and Khosravani 2000), and in 2010 only 4% of kidney transplants were sourced from living related donors (Kazemeyni and Aghighi 2012). The risk that offering payments will undermine altruistic donation is speculative, but I believe it is plausible. If few vendors are forthcoming once the poor are excluded from selling, organ markets may fail to realize both of their most important benefits: to significantly increase the supply of transplantable kidneys and to offer the desperately poor an opportunity to improve their situation. While the empirical argument on vendor harm defended in this article does not amount to an all-thingsconsidered objection to paid donation, it has many important implications for the organ market debate. First, the argument that we should establish organ markets in order to provide the worst-off members of society with a new means to improve their situation is untenable; we should seek less harmful and more effective means of alleviating poverty than kidney sales. Moreover, the significance of the risks vendors face strengthens paternalistic arguments against kidney sales. This includes arguments based on hard paternalism, as well as potentially more palatable arguments based on soft paternalism or the kind of group soft paternalistic concerns recently advanced in connection to paid donation by Malmqvist (2012). Second, the utilitarian argument in favor of organ markets is rendered incomplete. Instead of pointing to the potential benefits to kidney recipients and sellers alike, proponents of organ markets will have to measure, at the very least, the benefits to recipients against the harms to vendors, as well as the increased reliance on vendors if payments displace altruistic donation. This does not rule

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out the possibility of a utilitarian case against prohibition—the potential benefits to those dying on the waiting list are a morally weighty consideration—but it does complicate the kind of argument that must be put forward. Harms to vendors have no bearing on promarket arguments rooted primarily in the value of personal autonomy, such as those offered by Gerald Dworkin (1994), or appeals to self-ownership, such as those offered by Mark Cherry (2005, chap. 2). Notably, however, both Dworkin and Cherry indicate that the potential financial benefits to vendors reinforce the case for organ markets (Cherry 2005, 81– 83; Dworkin 1994). Abandoning this second claim would require proponents of organ markets to justify attaching greater value to vendors’ autonomy than physical, psychological, social, and financial well-being. Such an argument could prove successful, but will likely be more controversial than one also grounded in concern for vendors’ wellbeing. Most importantly, the argument put forward in this article suggests that a question advocates of organ markets consider settled should be reopened. Many proponents of paid donation, including most prominently RadcliffeRichards et al. (1998), have defended markets in kidneys by building up a prima facie case in favor of sales, addressing common objections one by one, and concluding that as none of these objections succeeds, the case in favor of kidney sales is settled unless better counterarguments can be found. While some opponents of organ markets have attempted to meet the challenge of developing novel arguments against organ markets (see, e.g., Rippon 2012), the familiar argument that vendors would be harmed deserves more careful scrutiny than market proponents have given it. If regulated systems of kidney vending will likely replicate many of the harms of existing markets, the case for kidney markets is at worst misguided, and at best incomplete.

ACKNOWLEDGMENT The author thanks Dr. Michael Selgelid, Dr. Justin Oakley, Dr. Linda Barclay, Dr. Jennifer Koplin and the anonymous peer reviewers for their helpful feedback on earlier versions of this article. &

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Assessing the likely harms to kidney vendors in regulated organ markets.

Advocates of paid living kidney donation frequently argue that kidney sellers would benefit from paid donation under a properly regulated kidney marke...
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