Wednesday, March 21, 2018

Kidney donor/sellers in Iran face social stigma--2 papers

The first of these two recently published papers is a report compiling interviews taken some time ago:

Coercion, dissatisfaction, and social stigma: an ethnographic study of compensated living kidney donation in Iran
Sigrid Fry‑Revere,  Deborah Chen,  Bahar Bastani,  Simin Golestani,  Rachana Agarwal, Howsikan Kugathasan, and Melissa Le
International Urology and Nephrology,, Online, February 2018

Abstract: "This article updates the qualitative research on Iran reported in the 2012 article by Tong et al. “The experiences of commercial kidney donors: thematic synthesis of qualitative research” (Tong et al. in Transpl Int 25:1138–1149, 2012). The basic approach used in the Tong et al. article is applied to a more recent and more comprehensive study of Iranian living organ donors, providing a clearer picture of what compensated organ donation is like in Iran since the national government began regulating compensated donation. Iran is the only country in the world where kidney selling is legal, regulated, and subsidized by the national government. This article focuses on three themes: (1) coercion and other pressures to donate, (2) donor satisfaction with their donation experience, and (3) whether donors fear social stigma. We found no evidence of coercion, but 68% of the paid living organ donors interviewed felt pressure to donate due to extreme poverty or other family pressures. Even though 27% of the living kidney donors interviewed said they were satisfied with their donation experience, 74% had complaints about the donation process or its results, including some of the donors who said they were satisfied. In addition, 84% of donors indicated they feared experiencing social stigma because of their kidney donation."

Here's an excerpt from the discussion of social stigma:  

"Some donors had a general sense that people had negative impressions of donors. One donor pointed out, “When people find out that you have donated, they start looking at you in a different way. They start keeping their distance.” Another donor explained what he thought was going through
people’s heads: “Oh, he sold his kidney, he’s not a good person.”
and here's a paper with reports from an internet survey:

The Social Stigma of Selling Kidneys in Iran as a Barrier to Entry: A Social Determinant of Health
Mohammad Mehdi Nayebpour  Naoru Koizumi
World Medical and Health Policy, Volume10, Issue1, March 2018,
Pages 55-64
Iran is the only country in the world currently with a legalized compensated kidney donation system, in which kidney sellers are matched with end‐stage renal disease patients through a regulated process. From a practical point of view, this model provides an abundance of kidneys for transplantation as opposed to the American model that relies on altruistic donation. The major concern about adopting the Iranian model is the possibility of exploitation. A large body of literature exists on this topic, but few have focused on its cultural aspects. This paper sheds light on the cultural implications of the Iranian model by providing empirical evidence on the social stigmas against kidney sale in Iran. We claim that these stigmas act as barriers to entry to the supply market of kidneys. Due to the conditions created by social stigmas, kidney sellers are forced to consider not only monetary rewards but also cultural factors. Thus, they tend to be more cautious and try to avoid impulsive decisions. Such social stigmas act as unofficial regulatory forces to keep kidney sale as the last resort for the poor, to diversify the supply market by age, and to stretch the decision‐making process in the absence of a mandatory waiting period for transplantation."

from the discussion:
"Our survey demonstrated that an immense amount of negative stigma is directed toward kidney sellers in Iran from society. Comparison of our findings to those reported by Ghods et al. (2001), who studied the actual characteristics of kidney sellers, reveals stark differences between perception and reality. Ghods et al. interviewed 500 kidney sellers in Iran in 2001 (Ghods et al., 2001). The study reports that only 6 percent of them were actually illiterate (while 71 percent of our respondents thought kidney sellers are illiterate), 88 percent had elementary to high school degree (while only 22 percent of our respondents thought kidney sellers have a high school education), and 6 percent had university degrees and above (6 percent of our respondents thought kidney sellers have above high school education). This gap between the actual profile and the perception of kidney sellers indicates that while Iranians benefit from the current policy, they have a grave stigma against it. The other important gap between perception and reality appears in question 5. About 15 percent of people consider that kidney sellers are drug addicts and 56 percent are not sure whether kidney sellers are drug addicts or not. This particular perception is stunning, since by law kidney sellers undergo a series of strict medical tests before becoming eligible for selling. "

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