Integrating a culturally competent APOL1 genetic testing program into living donor evaluation

PROJECT SUMMARY/ABSTRACT
Living donor (LD) kidney transplantation is the optimal treatment for patients with end-stage kidney disease
(ESKD). However, LDs take on a higher risk of future ESKD themselves. African American (AA) LDs have an
even greater, 3.3-fold, risk of ESKD than white LDs post-donation. Because evidence suggests that
Apolipoprotein L1 (APOL1) risk variants contribute to this greater risk, transplant nephrologists are increasingly
using APOL1 testing to evaluate LD candidates of African ancestry. However, nephrologists do not consistently
perform genetic counseling with LD candidates about APOL1 due to a lack of knowledge and skill in
counseling about APOL1. Without proper counseling, APOL1 testing will magnify LD candidates’ decisional
conflict about donating, jeopardizing their informed consent. Given their elevated risk of ESRD post-donation,
and AAs’ widely-held cultural concerns about genetic testing, it is ethically critical to protect AA LD candidates’
safety through APOL1 testing in a culturally competent manner to improve informed decisions about donating.
No transplant programs have integrated APOL1 testing into LD evaluation in a culturally competent manner.
Clinical “chatbots,” mobile apps that use artificial intelligence to provide genetic information to patients and
relieve constraints on clinicians’ time, can improve informed treatment decisions and reduce decisional conflict.
The chatbot “Gia,” created by a medical genetics company, can be adapted to any condition. However, no
chatbot on APOL1 is currently available. No counseling training programs are available for nephrologists to
counsel AA LDs about APOL1 and donation in a culturally competent manner. Given the shortage of genetic
counselors, increasing nephrologists’ genetic literacy is critical to integrating genetic testing into practice.
The objective of this study is to culturally adapt and evaluate the effectiveness of an APOL1 testing
program for AA LDs at two transplant centers serving large AA LD populations (Chicago, IL, and Washington,
DC). The APOL1 testing program will evaluate the effect of the culturally competent testing, chatbot, and
counseling on AA LD candidates’ decisional conflict about donating, preparedness for decision-making,
willingness to donate, and satisfaction with informed consent. The specific aims are to:
1. Adapt Gia and transplant counseling to APOL1 for use in routine clinical practice
2. Evaluate the effectiveness of this intervention on decisional conflict, preparedness, and willingness to
donate in a pre-post design
3. Evaluate the implementation of this intervention into clinical practice by using the RE-AIM framework to
longitudinally evaluate nephrologist counseling practices and LDs’ satisfaction with informed consent.
The impact of this study will be the creation of a model for APOL1 testing of AA LDs, which can then be
implemented nationally via implementation science approaches. APOL1 will serve as a model for integrating
culturally competent genetic testing into transplant and other practices to improve patient informed consent.

Grant Number: 5R01DK128207-05
NIH Institute/Center: NIH
Principal Investigator: Akansha Agrawal