Seeking a match: Identity politics and genetic rationales in recruiting Korean-American hematopoietic stem cell donors

Hematopoietic stem cell (HSC) transplantation is a potentially curative therapy for hematologic malignancies that depends on the identification of a human leukocyte antigen (HLA)-matched donor. In the United States, patients of Asian ancestry are less likely to find matching donors due to, in part, an under-representation of Asian donors in the National Marrow Donor Program (NMDP) registry. Donor recruitment drives have been organized in and by Asian American communities to address this disparity. Little attention has been paid, however, to Asian Americans' knowledge of the genetic basis of an HLA-match and how their attitudes toward genetic information influence donor registration. The purpose of this study is to identify prospective Korean-American donors' understandings of a “match” and attitudes toward genetic information. Participants were recruited from those who enrolled and those who declined to enroll during three community NMDP registry drives. Participants' cultural beliefs toward donation, understanding of “match,” and attitudes toward the benefits and harms of genetic information were ascertained through in-depth, semi-structured interviews. Preliminary findings suggest that prospective donors are familiar with the idea of a “match” but not in terms of donor-recipient ethnic concordance. Thus, while ethnic identity frames donor enrollment, its function as a proxy for HLA-types prevalent among Koreans is not well understood. Follow-up interviews examine this issue further. Current recruitment strategies to increase the HSC donor pool among Asian Americans may benefit from fostering a greater understanding of the genetic basis of HSC transplantation while addressing concerns regarding the use of genetic information.