Dealing With Uncertainty
Apolipoprotein L1 (APOL1) may explain much of the excess rate of end-stage renal disease (ESRD) in Blacks compared to Whites. Kidney grafts from deceased donors with two APOL1 risk alleles have worse graft survival, but outcomes appear unaffected by recipient APOL1 status. Unknown is whether unilateral nephrectomy increases the risk of ESRD in living donors with two APOL1 risk alleles and whether their donated kidneys have worse graft survival compared with other living donor grafts. This chapter addresses the decision-making processes of the donor and candidate with their respective separate transplant teams when incomplete data about long-term safety and outcome have implications for both patients. The chapter argues that voluntary APOL1 testing should be offered to prospective Black living donors but the results should only be shared with potential recipients with the living donor’s consent. Living donors are patients who have a right to privacy about their genetic makeup.