Insights From Black Living Kidney Donors: An Interview Study on APOL1 Genetic Testing Experiences

Area of Science:

• Nephrology
• Genetics
• Transplantation

Background:

• APOL1 genetic testing practices for living kidney donor candidates vary across transplant centers.
• Understanding the perspectives of living donors who have undergone APOL1 testing is crucial for policy development.

Purpose of the Study:

• To explore the experiences, beliefs, and motivations of Black living kidney donors regarding APOL1 genetic testing.
• To gather insights for transplant programs developing APOL1 testing policies.

Main Methods:

• In-depth, semi-structured interviews were conducted with 31 Black individuals evaluated for living kidney donation who underwent APOL1 testing.
• Thematic analysis was applied to de-identified interview transcripts.

Main Results:

• Participants expressed a need for better information and communication regarding APOL1 testing.
• Concerns were raised about potential impacts on donation eligibility and a desire for donor involvement in testing decisions.
• Opinions varied on sharing APOL1 results with recipients, and some participants voiced concerns about race-based testing.

Conclusions:

• Living kidney donors emphasize the need for enhanced transparency, autonomy, and shared decision-making in APOL1 testing.
• Findings offer valuable insights for transplant centers to refine their APOL1 testing policies and practices.