Dear Editor:

Due to a lack of national statistics on transplantation based on religious beliefs, it is unknown how many Muslims in the United States await organ transplants. Yet, because American Muslims are a group composed of individuals from minority racial and ethnic backgrounds, disparities in organ donation needs and receipts may exist in this community. Given the contestations over the religious permissibility of organ donation either during a person’s life (living donation) or after death (deceased donation), Muslims may also be reticent to donate organs.

In a recent study,¹ a team led by Dr. Aasim Padela, a researcher and emergency medicine doctor at the University of Chicago (Chicago, IL, USA), attempted to address biomedical and religious dimensions of organ donation and thereby fill in knowledge gaps and promote attitudinal changes in the community. As director of the University’s Initiative on Islam and Medicine, Padela’s career has focused on the intersection of community health and religion, and his research has largely centered on health behavior changes for Muslim patients.

After examining other organ donation-focused educational programs among Muslim groups, Padela noticed a clear pattern of overtly promoting permissive organ donation edicts without addressing the controversies. This approach can lead to mistrust, not only of the donation processes but also of the health care team and organ donation professionals. It is no surprise, then, that these programs were not successful in changing the trend of American Muslims in avoiding both living and deceased organ donation.

Therefore, Dr. Padela’s team (of which I was a member in my role as former Director of Programs for the National Kidney Foundation of Illinois and as a living kidney donor) approached the subject of organ donation permissibility from an unbiased perspective, offering information that showed organ donation’s potential benefits but also its potential drawbacks. The study, funded by the Health Resources and Services Administration (HRSA R39OT31104, with Padela as principal investigator), was formed in partnership with medical, organ donation, and health education organizations and took place over 2 years at mosques in the Chicago area and the suburbs of Washington, DC, USA. Educational sessions and peer-led discussions focused not on why participants should consider organ donation but rather on giving as much information as possible on all aspects of the issue, allowing participants to form opinions based on both religious and biomedical facts. The educational intervention was focused on providing balanced information and involved surveys conducted before and after sessions to assess participant knowledge gain and attitudinal change. Oversight and ethical approval were given by the Biological Sciences Division Institutional Review Board at the University of Chicago.

“If people feel manipulated, like they’re being given only half the information, that tends to backfire,” explained Dr. Michael Quinn, a social psychologist at the University of Chicago who worked with Padela to design the study. People are better able to recall information when they feel they have been given the chance to make choices based on all of the available information.

Final study data have shown that participants indeed did increase their understanding of medical information and Islamic perspectives related to organ donation (results are pending publication). More importantly, participants indicated clear behavioral changes in their informed preparedness to make organ donation-related decisions for themselves and their families.

Collaborations with organizations already doing organ donation-related outreach, as well as locating educational sessions inside mosques, have put study participants further at ease while learning the presented material. A community advisory board made up of mosque leaders and health advocates has helped ensure the team’s two-sided approach.

“I think the fact that we held these workshops in a mosque setting and had permission of mosque leadership allowed people to put some faith in us,” Quinn said. “We still had doctors and people from the kidney foundation talk about their areas of specialty, but they did this in the context of going into the community, of being there, of being part of that system.”

Being absolutely clear that speakers, community leaders, and peer educators were available to give information and answer questions, but not to persuade or force decisions on participants, allowed for nonjudgmental discussions about the potential costs and benefits of organ donation from all perspectives.

This improved way of offering information without bias is particularly important for Muslim communities, which are not monolithic, but rather are made up of diverse foundational and formed beliefs. It is unlikely that people would respond well to being told what they should believe, particularly by those in the medical establishment or by outside groups. By further exploring the unbiased and non-persuasive educational intervention style implemen­ted in this study, groups internationally may be able to offer information about the permissibility of organ donation and its potential medical effects with more success, having gained the trust of participants.

References:

1. Padela AI, Duivenbode R, Quinn M, Saunders MR. Study protocol for ‘Informing American Muslims about Organ Donation (IAMaLD)’: a randomized controlled cross-over trial evaluating the effect of religiously—tailored health education. Social Science Protocols. 2019:1-17. doi:10.7565/ssp.2019.2654