Coercion, dissatisfaction, and social stigma: an ethnographic study of compensated living kidney donation in Iran
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NEPHROLOGY - ORIGINAL PAPER
Coercion, dissatisfaction, and social stigma: an ethnographic study of compensated living kidney donation in Iran Sigrid Fry‑Revere1 · Deborah Chen2 · Bahar Bastani3 · Simin Golestani4 · Rachana Agarwal5 · Howsikan Kugathasan6 · Melissa Le7 Received: 22 August 2017 / Accepted: 12 February 2018 © Springer Science+Business Media B.V., part of Springer Nature 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. Keywords Living kidney donation · Ethics · Paid organ donation · Law · Iran · Ethnographic study · Human rights · Social justice · Transplantation · Bioethics · Exploitation · Donor satisfaction · Poverty · Medical ethics · Transplant ethics · Living organ donation
Background Study origin Authors are listed in the order in which they joined the project. The affiliations listed are the relevant affiliations the authors had while working on this article. * Sigrid Fry‑Revere [email protected] 1
American Living Organ Donor Network, 40357 Featherbed Lane, Lovettsville, VA 20180, USA
2
Center for Ethical Solutions, Madison, WI, USA
3
Saint Louis University School of Medicine, Saint Louis, MO, USA
4
University of Texas, Austin, TX, USA
5
Harvard University, Boston, MA, USA
6
Fisk University, Nashville, TN, USA
7
University of Virginia, Charlottesville, VA, USA
In 2012 Tong et al. published “The experiences of commercial kidney donors: thematic synthesis of qualitative research,” which reviews the work of seven researchers on compensated organ donation. That review includes the work of two researchers who wrote about the Iranian system of kidney donation: Dr. Zargooshi, who wrote in 2001 [2, 3], and Dr. Tober, who wrote in 2007 [4]. Those studies were based on living donor data collected, respect
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