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

Project: Research project

Project Details


Living donor (LD) kidney transplantation is the optimal treatment for patients with end-stage renal disease (ESRD) as it confers greater patient and graft survival than deceased donor kidney transplantation. However, LDs have a higher risk of ESRD than non-LDs. African American (AA) LDs have an even greater risk of ESRD than white LDs post-donation: 74.7 versus 22.7 per 10,000 LDs. 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 inconsistently 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 kidney disease post-donation, and AAs’ widely-held concerns about genetics, it is ethically critical to protect AA LD candidates’ safety through APOL1 testing in a socially sound manner to enable informed decisions about donating. No transplant programs have integrated APOL1 testing into LD evaluation in a systematic, culturally competent manner. Clinical “chatbots,” a smartphone app involving artificial intelligence to provide genetic information to patients and relieve constraints on counselors’ time, can increase informed treatment decisions and reduce decisional conflict. The chatbot “Gia,” acquired by Invitae, a medical genetics company can be adapted to any condition. However, no chatbot on APOL1 is currently available. No nephrologist counseling programs are available to counsel AA LDs about APOL1 and donation in a culturally competent manner. 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 study 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 the APOL1 intervention on decisional conflict, preparedness, and willingness to donate in a pre-post design 3. Evaluate the implementation of the APOL1 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. The proposed study will prepare transplant programs to deliver culturally competent counseling when the NIH APOLLO study is done in ~5 years.
Effective start/end date4/1/213/31/26


  • National Institute of Diabetes and Digestive and Kidney Diseases (5R01DK128207-02)


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