Doctoral student Elham Mireshghi (University of California, Irvine), under the supervision of Dr. Michael Montoya, will undertake research on the intersection of public policy, religion, and biotechnology through an examination of the making and implementation of policy for the regulation of human organ donation. Previous research has focused on either altruistic organ donations or illegal organ markets. This project will be undertaken in Iran, which is the only country where financial payment for kidney donation is legal and bureaucratically routinized, an arena of organ donation that has not previously been investigated by social scientists.
Mireshghi will employ multiple social scientific research methods for data collection. She will conduct interviews with samples drawn from the four primary groups involved: the organization that instigated and now implements the policy; medical doctors; clerics who were consulted; and donors, recipients, and their families. She also will observe at hospitals where the operations are performed and collect and analyze religious documents.
The research is important because it will contribute to understanding the process by which sensitive innovations are regulated and how those regulations are connected to social, cultural, and economic contexts in which they exist. Findings from the research may also contribute to the debate on solutions for the worldwide organ shortage. Funding this research also supports the education of a graduate student. This research is supported by both the NSF Cultural Anthropology Program and the Law and Social Sciences Program.
This research investigates the development and implementation of the world’s only bureaucratically organized program for paid kidney donation, internationally known as the ‘Iranian Model’ for living unrelated kidney donation. The program has had significant achievements, such as regulating the process of donor-patient matching, and preventing organ trafficking, through strict oversight of transplantation proceedings and by only permitting transplantations between individuals of the same nationality. The Iranian program for kidney donation has benefited patients with end-stage renal disease, by providing subsidized medication, and surgery in university hospitals and running a vast educational campaign aimed at raising awareness about kidney disease. The regulation of paid kidney donation is part of a larger program that in recent years has actively advocated for brain death donation, in attempts to gradually replace all paid kidney donation with transplants from the brain dead. However, thus far it is primarily the regularization of kidney selling, which is purported to have eradicated the kidney waiting-list that has garnered wide-spread international attention, and has even been lauded by some economists, bioethicists and medical doctors in the United States as a role-model program. However, during the course of this research, it was determined that even within Iran, the program is wrought with moral uncertainty among the very people – doctors, jurists, policy-makers, who enabled its implementation, as well as the general public. And so, the project sought out to investigate the ways in which the program had been developed and sustained since the late 1990s, and the contingencies that have threatened to undermine it. Since the transplantation of organs from unrelated persons became possible in the 1980s in Iran, a so-called ‘market’ for kidney selling emerged, as desperate patients on dialysis sought out strangers to provide a healthy kidney. In 1997, through the advocacy of the NGO – the Kidney Patient Foundation (KPF), the government stepped in to regulate the process and decrease the burden of kidney patients by providing a one million toman ‘sacrifice award’ to living kidney donors. As the program had an eye on improving the conditions of kidney patients and was in fact pushed forward and largely implemented by an organization founded to support kidney patients, the welfare of kidney patients came to supersede that of donors. The wide-spread stigma surrounding kidney selling in Iran meant that sellers also actively participated in self-erasure, rendering themselves invisible by avoiding follow-up access post-transplantation. This has participated in the persistence of the program, without adequate counseling for donors, and the inclusion of necessary conditions for protecting their health. Within the KPF that has implemented the program, there has been moral conflict with regard to the appropriateness of financially incentivizing organ donation, which leads primarily young men and women between the ages of 20 and 30 to opt for selling their kidneys as a way of obtaining quick cash. For the time being, sustaining a list of paid living donors is seen as the most practical solution for confronting the high demand for healthy kidneys, despite such a scheme’s obvious shortcomings. Much of the research is dedicated to understanding how conflicting moral concerns are negotiated on an everyday basis as sellers, patients, doctors, jurists and patient advocates attempt to treat end-stage renal disease within the confines of institutional constraints, and while holding vastly different personal and disciplinary interests. Furthermore, one of the major outcomes of this research was a deeper understanding of the relationship between religious and non-religious institutions in Iran after the Islamic Revolution, and the evolution of Shi'a jurisprudence as an "expert discipline" parallel to other expert disciplines such as medicine and economics. The investigation of the development of permissive fatwas on kidney sales revealed the pivotal role medical experts and non-religious institutions play in constructing the premises underlying fatwas, and guiding subsequent rulings. In the case of kidney transplantation, fatwas permitting kidney sales were partially guided by medical assumptions (much of which was obtained from western medical publications) about the well-being of donors, provided by the KPF activists. Furthermore, this research found that the jurisprudential rulings appear to collapse the subjectivity of those who altruistically donate their organs, and those who sell a kidney into one, failing to see the differences in the conditions leading up to transplantation and the varied consequences each of these conditions can entail for donors and sellers. However the flexibility in Shi'a jurisprudence means that if sufficient public attention is given to the issues of donors and the social and physical ramifications of organ selling are brought into light, subsequent "secondary fatwas" may overturn primary fatwas that allow kidney selling.
