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Response to Open Peer Commentaries on “Assessing the Likely Harms to Kidney Vendors in Regulated Organ Markets” a

Julian Koplin a

Monash University Published online: 17 Sep 2014.

To cite this article: Julian Koplin (2014) Response to Open Peer Commentaries on “Assessing the Likely Harms to Kidney Vendors in Regulated Organ Markets”, The American Journal of Bioethics, 14:10, W1-W3, DOI: 10.1080/15265161.2014.955329 To link to this article: http://dx.doi.org/10.1080/15265161.2014.955329

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The American Journal of Bioethics, 14(10): W1–W3, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 1526-5161 print / 1536-0075 online DOI: 10.1080/15265161.2014.955329

Correspondence

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Response to Open Peer Commentaries on “Assessing the Likely Harms to Kidney Vendors in Regulated Organ Markets” Julian Koplin, Monash University I am grateful for the thoughtfulness of the open peer commentaries, and regret that I cannot reply to them all in this brief response. My focus here is on the arguments raised concerning the available data from Iran, the possibility of addressing harms through regulation, the desirability of pilot studies, and the importance of allowing markets in order to respect vendors’ autonomy. In her commentary, Fry-Revere (2014a) criticises my discussion of the Iranian model for drawing primarily on two studies from Javaad Zargooshi, both of which were completed almost fifteen years ago in an economically depressed region of Iran. She emphasises the limitations of this research by pointing out that the Iranian model is continually evolving and that its implementation varies greatly between regions. According to Fry-Revere, my conclusion that vendors will likely experience harms in even a well-regulated market is rendered invalid by my failures to take into account the limitations of Zargooshi’s research and to engage with her own book, The Kidney Sellers: A Journey of Discovery in Iran.1 Unlike Zargooshi, Fry-Revere (2014b, 91) reports that most of the vendors she interviewed were ultimately satisfied with their decision. I was unable to discuss The Kidney Sellers previously as it was released after my article was accepted for publication. However, the research it presents has a number of serious limitations, and ultimately fails to provide useful information on the core issue I examine: the effects of vending on sellers’ long-term wellbeing. Fry-Revere (2014a, 2014b) does not provide specific details on the number of vendors interviewed, the structure of these interviews, or what exact proportion of vendors expressed feelings of

regret. Crucially, her confidence that most vendors are satisfied with their decision seems primarily based on interviews conducted predonation. While follow-up interviews were attempted, Fry-Revere (2014b, 83) explains that contacting donors postdonation is difficult, with Iranian researchers unable to contact as many as 80% of donors one year after donation. Fry-Revere (2014b, 83, 143, 164) mentions similar difficulties contacting participants for follow-up, which was attempted two years and eight months after the initial visit, although without including specific figures on what proportion of participants were ultimately reached. As I argue in the target article, vendors’ views predonation or prior to discharge from hospital may not provide a reliable indicator of their long-term wellbeing as the consequences of vending on physical, psychological, social and financial wellbeing are unlikely to be immediately apparent. Fry-Revere’s (2014b, 85–87) interviews with a group of seven donors participating in a long-term follow-up program in Tehran are therefore especially noteworthy. In contrast to the vendors Fry-Revere interviewed while they were seeking to arrange a sale or undergoing preparation in transplant wards, six of these seven vendors were described as ‘unhappy’. Their complaints—feelings of discrimination, experiences of stigma, increased difficulty finding employment, bitterness and sadness—are not dissimilar to those described in Zargooshi’s earlier studies. Perhaps because of the limitations of its research, The Kidney Sellers does not meaningfully respond to concerns that benefits to Iranian vendors may be short-lived, or that many vendors may come to regret their decision. Rather,

Address correspondence to Julian Koplin, Centre for Human Bioethics, Monash University, VIC 3800, Australia. E-mail: julian. [email protected] 1. Fry-Revere also alludes to “a dozen or more other works that include discussions of Iran” (38) I should have included. However, with the exception of the recent study from Fallahzadeh and colleagues (2013) mentioned by Fry-Revere, I did not uncover any additional studies investigating vendors’ long-term outcomes in the course of my research, and Fry-Revere fails to cite any. Fallahzadeh and colleagues (2013) recorded poorer health and social functioning among compensated living-unrelated donors than living-related ones, but the study was hampered by a participation rate of only 7.6% of paid living-unrelated donors and 18% of living-related donors.

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in her brief discussion of such concerns, Fry-Revere claims that it would be callous to take away vendors’ hope for a better future regardless of whether such hopes would ultimately be realised:

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[B]y what right would [critics of the Iranian model] deny donors. . . a chance at improving their lives, however fleeting that hope may be? And besides, at least for some, the realization of [this] dream. . . was not imaginary. (Fry-Revere 2014b, 170)

Whatever the merit of this argument, it falls far short of showing that concerns regarding vendors’ long-term wellbeing are misguided. Fry-Revere (2014b) does not provide strong evidence that the Iranian model (or even its implementations in Isfahan and Razavi Khorasan) has eliminated the physical, psychological, social and financial harms that the wider literature on organ markets describes. It is heartening to read that some NGOs involved in the Iranian model work hard to meet donors’ needs (Fry-Revere 2014a, 2014b), and further research on the long-term outcomes of vendors afforded this support would be desirable. Yet in the absence of reputable data on these vendors’ long-term wellbeing, it is premature to conclude that the kinds of harms recorded by Zargooshi in Kermanshah have since been eliminated elsewhere in Iran. According to Taylor (2014), my concerns regarding vendor wellbeing can be addressed by carefully regulating the market. Taylor cites Matas and Schnitzler (2004) in support of the claim that transplantation carries cost savings of $270,000 compared to dialysis, and argues that payments and services valued up to this amount could therefore be provided to vendors. With these funds available, Taylor believes the market could be arranged to create lasting financial benefits for vendors and, through doing so, eliminate the shame and stigma currently associated with kidney selling. While Taylor’s model is carefully constructed, I have a number of reservations. Firstly, Taylor’s assumption that payments of up to $270,000 are politically achievable seems highly optimistic. Matas and Schnitzler (2004) calculated the actual cost savings of transplantation relative to dialysis at only $94,579, whereas the larger figure that Taylor cites ($270,000) includes the addition of a monetary value representing the quality-adjusted life years gained by transplant recipients.2 $270,000 is substantially more expensive than the status quo, and may prove a hard sell when compared to less ambitious proposals. For example, an influential paper from economists Becker and Elias (2007) advocates a more modest payment of roughly $15,000—a figure they approvingly note is roughly equivalent to that received by Indian vendors on the black market. In this context, 2. The actual cost savings would be somewhat lower if paid donations crowd out altruistic donations, or if all living donors are paid regardless of their relationship to the recipient (Matas & Schnitzler 2004).

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policymakers might view Taylor’s proposal as prohibitively costly, especially if there is reason to suspect that even substantial payments would not fully address the harms experienced by vendors. Secondly, the extent to which substantial payments would protect against adverse psychological and social outcomes is unclear. Some of the emotional ramifications of vending, such as the sense of disembodiment described by Moniruzzaman (2014), do not seem straightforwardly reducible to the stigma kidney selling attracts as a lowly paid source of income. Moreover, it is not clear that improving the financial status of sellers would eliminate this stigma. Many aspects of the social context would remain untouched; if most kidney vendors sell due to extreme hardships, the act of kidney selling would remain associated with financial desperation regardless of whether vendors’ financial status ultimately improved. Finally, even substantial payments will not necessarily protect against long-term financial decline in the context of meagre employment opportunities, the physical consequences of nephrectomy, and the additional burdens imposed by the social, psychological and emotional ramifications of vending outlined in my article. My conclusion that vendors would face significant risks in a regulated market remains provisional and open to revision in light of new research. The question of whether we should trial payments to living donors in order to clarify these risks was outside of the scope of my article. Hippen (2014) states that I should explicitly support pilot studies, while Epstein (2014) argues my article “play[s] into the hands” of organ market advocates by leaving this possibility open. In response, I want to emphasise the limited scope of my argument. The possibility of conducting pilot studies to help clarify the degree of harm or benefit faced by vendors in a well-regulated market should be carefully examined. Yet, while such studies could further our knowledge on the subject, this does not settle the question of whether such research should be conducted, all things considered. As Martin and White (2014) argue, there may be further questions regarding the risks of vending that should be resolved using data from altruistic living donors before a trial of financial incentives can be justified. There is a further risk that conducting trials could crowd out altruistic donation— and that such effects would linger after the trial concludes (see, e.g., Rothman and Rothman 2006). Moreover, there could be other arguments against organ markets that would rule out their permissibility (and therefore the permissibility of trials) altogether; indeed, some of the commentaries in this issue offer arguments to this effect. Conversely, it may be possible to justify organ markets regardless of what pilot studies reveal on the consequences to vendors. The commentary from Giubilini (2014) attempts this latter task. Giubilini appeals to the importance of liberty and bodily autonomy to argue that softer measures than prohibition, such as ensuring informed consent or discouraging vending through public information campaigns, are more appropriate than banning kidney selling outright.

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Kidney Vendors in Regulated Organ Markets

Two of the commentaries pre-empted this line of argument: Kerstein (2014) highlights that the negative consequences of vending could impair vendors’ ability to exercise their autonomy, while Malmqvist (2014) argues that it would be difficult to ensure vendors do not sell due to interpersonal coercion. I would like to briefly raise one additional point for consideration, drawing on comments made by Hippen (2014): that the ethical standards required by medical professionalism would rule out physician involvement in organ markets that reproduce the harms I describe in my article. Physicians are not only required to respect their patient’s autonomy, but are also obligated to act as a good caregiver. The consent of potential living kidney donors is therefore necessary, but in cases where donation will inflict significant harm it is not sufficient (see, e.g., Hartogh 2013). If organ markets will predictably harm participants—a claim Giubilini concedes—appeals to the importance of respecting vendors’ autonomy are more controversial than they first appear. The nature of medical professionals’ ethical obligations, and not just the scope of vendors’ liberty, would be at stake. &

REFERENCES Becker, G. S., and J. J. Elıas. 2007. Introducing incentives in the market for live and cadaveric organ donations. The Journal of Economic Perspectives 21(3): 3–24. Epstein, M. 2014. Playing into the hands of the promarket campaigners. American Journal of Bioethics 14(10): 39–40. Fallahzadeh, M. K., L. Jafari, J. Roozbeh, N. Singh, H. ShokouhAmiri, S. Behzadi, G. A. Rais-Jalali, M. Salehipour, S.A. Malekhosseini, and M. M. Sagheb. 2013. Comparison of health status and quality of life of related versus paid unrelated living

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kidney donors. American Journal of Transplantation 13(12): 3210– 3214. Fry-Revere, S. 2014a. The truth about Iran. American Journal of Bioethics 14(10): 37–38. Fry-Revere, S. 2014b. The kidney sellers: A journey of discovery in Iran. Durham, NC: Carolina Academic Press. Giubilini, A. 2014. Harms to vendors: We should discourage, not prohibit organ sales. American Journal of Bioethics 14(10): 25–27. Hartogh, G. D. 2013. Is consent of the donor enough to justify the removal of living organs? Cambridge Quarterly of Healthcare Ethics 22(1): 45–54. Hippen, B. 2014. All the more reason: Why Julian Koplin should support a trial of incentives for organ donation. American Journal of Bioethics 14(10): 31–33. Kerstein, S. J. 2014. Are kidney markets morally permissible if vendors do not benefit? American Journal of Bioethics 14(10): 29–30. Malmqvist, E. 2014. A further lesson from existing kidney markets. American Journal of Bioethics 14(10): 27–29. Matas, A. J., and M. Schnitzler. 2004. Payment for living donor (vendor) kidneys: A cost-effectiveness analysis. American Journal of Transplantation 4(2): 216–221. Moniruzzaman, M. 2014. Regulated organ market: Reality versus rhetoric. American Journal of Bioethics 14(10): 33–35. Martin, D., and S. White. 2014. Risk, regulation and financial incentives for living kidney donation. American Journal of Bioethics 14(10): 46–48. Rothman, S. M., and D. J. Rothman. 2006. The hidden cost of organ sale. American Journal of Transplantation 6(7): 1524–1528. Taylor, J. S. 2014. Avoiding harms to kidney vendors through legal, regulated markets. American Journal of Bioethics 14(10): 21–22.

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Response to open peer commentaries on "Assessing the likely harms to kidney vendors in regulated organ markets".

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