Evaluating ApoL1 Genetic Testing Policy Options for Transplant Centers: A Delphi Consensus Panel Project with...

Area of Science:

• Nephrology
• Genetics
• Transplantation

Background:

• Apolipoprotein L1 (ApoL1) risk variants (G1 and G2) are linked to kidney disease, particularly in individuals of sub-Saharan African ancestry.
• Current transplant practices for ApoL1 genetic testing in organ donors are inconsistent, necessitating clear clinical policy guidance.

Purpose of the Study:

• To establish consensus on key clinical policy questions regarding Apolipoprotein L1 (ApoL1) genetic testing in organ donation.
• To develop guidelines for testing procedures, decision-making processes, and result disclosure involving donors, recipients, and transplant programs.

Main Methods:

• A Delphi consensus panel involving 27 diverse stakeholders (donors, recipients, clinicians, genetic counselors) was convened.
• The panel, with 70% identifying as Black, engaged in two webinar rounds and three survey rounds to evaluate policy options.

Main Results:

• Consensus was reached on 18 policy options, with opposition to 15, emphasizing shared decision-making.
• Key agreements include inquiring about African ancestry (not race), discussing testing with donors before decisions, encouraging but not mandating result disclosure, and using results for informed decisions, not unilateral rejections.

Conclusions:

• The panel supported policies promoting discussion and shared decision-making among all stakeholders in the ApoL1 testing process.
• There was a collective opposition to transplant programs making unilateral decisions or prohibiting organ donation based solely on ApoL1 status.