A Focus Group Study on African American Living Donors' Treatment Preferences, Sociocultural Factors, and Health Beliefs About Apolipoprotein L1 Genetic Testing.

INTRODUCTION

Because L1 () risk variants may contribute to live donors' kidney failure postdonation, professional guidelines suggest informing potential donors with African ancestry about the availability of genotyping. This study assessed African American (AA) donors' perceptions of genetic testing and how may affect ethnic identity.

METHODS/APPROACH: Four focus groups were conducted with AA donors about their decision-making for and perceptions of genetic testing and donation to inform a new culturally targeted educational brochure on genetic testing. Qualitative data were analyzed by thematic analysis.

FINDINGS

Seventeen donors participated (47% participation rate). Four major themes emerged. (1) In hypothetical scenarios, most participants would have undergone testing during donor evaluation to make a more informed decision, but many would have still donated. (2) Participants desired information about how having 2 risk variants affects the donor's and the recipient's health. (3) Participants referred to diversity of genetic ancestry and cultural constructions of racial/ethnic identity to question the population at risk for risk variants and recommended that all potential donors undergo genetic testing and receive education about . (4) Participants worried that out-of-pocket costs would deter testing and that could become a preexisting condition and discriminate against AAs.

DISCUSSION

Our findings suggest that AA donors desire testing to foster informed consent. Transplant clinicians should be aware of these responses to testing and be sensitive to historical issues of distrust and discrimination.