African American living kidney donors who wish to save kidney transplant candidates’ lives may have a genetic variant (‘APOL1’) predisposing them to getting kidney disease after donating. Few transplant programs provide genetic counseling to donor candidates about APOL1 genetic testing and their risk of kidney disease. There are not enough genetic counselors to provide counseling in the US. This is a problem because counseling is needed to ensure informed consent for donors with elevated risk of kidney disease. No transplant program provides culturally competent counseling, which is needed because many African Americans distrust the healthcare system and genetic testing. The proposed study aims to develop and pilot test a culturally competent APOL1 genetic counseling program (curriculum) to improve transplant nephrologists’ practical knowledge and skills in counseling donor candidates about APOL1 and living donation. To achieve this goal, we will adapt available genetic counseling training programs to the APOL1 context, conduct a needs assessment of nephrologists’ counseling knowledge and skills about APOL1, and leverage our prior research. The proposed program will better enable Northwestern Medicine’s transplant team to integrate APOL1 genetic testing into donor evaluation, and serve as a model for integrating APOL1 genetic counseling into transplant programs across the country.
|Effective start/end date
|7/1/21 → 12/31/22
- Northwestern Memorial Hospital (Award Letter 4/1/21)
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