*Purpose: Queens County, NY, one of the most densely populated and most diverse areas in the country with >27% Asian but has one of the lowest donor registration rates in the country (13% vs national average of 52%). Asian Americans have the lowest organ donation registration rates in the United States, and the reason for this is incompletely understood. We aim to identify the barriers to organ donation among Chinese and Korean Americans.

*Methods: A systematic literature search was followed by a series of key informant interviews to gain a better understanding of the cultural, logistical and other barriers to donor registration among Chinese and Korean Americans. We conducted 15 face-to-face interviews with Chinese and Korean transplant nephrologists, community physicians, members of the clergy (Buddhist and Christian), transplant recipients, living donors, and donor family members using a scripted interview guide. Participants were queried about the personal/professional experience with organ donation, pragmatic, religious, cultural, and social barriers and facilitators to organ donation, and common misperceptions, myths, and taboos surrounding organ donation.

*Results: Consistent with the themes identified from the systematic review, commonly reported barriers among Korean and Chinese Americans in Flushing were a lack of knowledge of organ donation, desire for the body to remain intact after death and distrust of the healthcare system (resulting in a fear that one would be left to die if registered as a donor). Filial piety and respect for the body given by one’s parents were important factors thought to influence donor registration. Strong family values coupled with a cultural reluctance to discuss death as a topic among family members appears to underscore the reluctance to register. Notably religious beliefs do not appear to be a major barrier to organ donor registration.

*Conclusions: The literature review and key informant interviews identified a number of consistent themes regarding barriers to organ donation among Asian Americans. These findings will be used to inform the development of culturally and linguistically appropriate educational material aimed at heightening awareness of the dire need for organ registration among Asian Americans, addressing misperceptions surrounding organ donation, and increasing organ donation registration rates among Asian Americans in.

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