Development of a Culturally Sensitive Chatbot to Inform Living Donor Candidates of African Ancestry About Apol1 Genetic Testing
1Surgery, Northwestern University Feinberg School of Medicine, Chicago, IL, 2Center for Health Services and Outcomes Research, Northwestern University Feinberg School of Medicine, Chicago, IL, 3Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, 4Invitae, Inc, San Francisco, CA, 5Invitae, San Francisco, CA, 6Surgery, Georgetown University Medical Center, Washington, DC, DC, 7Obstetrics and Gynecology, Northwestern University Feinberg School of Medicine, Chicago, IL
Meeting: 2022 American Transplant Congress
Abstract number: 1597
Keywords: African-American, Donation, Ethics, Genomics
Topic: Clinical Science » Ethics » 22 - Psychosocial and Treatment Adherence
Session Information
Session Name: Psychosocial and Treatment Adherence
Session Type: Poster Abstract
Date: Tuesday, June 7, 2022
Session Time: 7:00pm-8:00pm
Presentation Time: 7:00pm-8:00pm
Location: Hynes Halls C & D
*Purpose: Living kidney donor candidates of African ancestry are increasingly asked to undergo Apolipoprotein L1 (APOL1) genetic testing to better understand their risk of kidney disease. This study aimed to adapt a HIPAA-compliant, interactive clinical chatbot, ‘Gia’ (Genetic Information Assistant), to inform donor candidates of African ancestry about APOL1 genetic testing in a culturally sensitive way, and scale up integration of APOL1 testing into donor evaluation.
*Methods: Gia chat content was developed by a team of social scientists, genetic counselors, and nephrologists. Feedback was solicited from a Community Advisory Board to refine content. Telephone focus groups were iteratively conducted with people of African ancestry. Participants reviewed the Gia chat to assess appearance, organization, wording, clarity, and cultural sensitivity. Participants then completed an online survey; descriptive statistics were analyzed. The research team revised Gia based on focus group and survey feedback.
*Results: Five focus groups were conducted (n=30 participants). Participants included community members (60%) or living kidney donors (40%). Most were female (60%) with a mean age of 40 years. Gia was designed to be culturally sensitive by addressing concerns about distrust (“How long has the medical community known about APOL1?”); privacy (“Your test results will be shared with you, your transplant team, the genetic testing lab⋯”); and risk profile (“Why do APOL1 risk variants occur mostly in people of African ancestry?”). Participant feedback informed adjustments to the chat including the need to explain early in the chat that APOL1 genetic testing is voluntary, free to study participants, and involves taking a saliva sample. Gia’s brief response options (“I see”, “Okay”) were viewed as ‘abrupt’ for some conversations among African Americans and replaced with engaging responses (“That makes sense”). Most participants ‘agreed’ or ‘strongly agreed’ that Gia was neutral and unbiased (83%), trustworthy (83%), and culturally sensitive to ethnic minority communities (70%).
*Conclusions: Preliminary findings suggest that individuals of African ancestry perceived Gia as informative about APOL1 genetic testing. Future research will assess the impact of Gia on informed decision making about APOL1 genetic testing.
To cite this abstract in AMA style:
Gordon EJ, Waite P, Gacki-Smith J, Duquette D, Agrawal A, Friedewald J, Savage S, Simmons E, Cooper M, Gilbert A, Wicklund C. Development of a Culturally Sensitive Chatbot to Inform Living Donor Candidates of African Ancestry About Apol1 Genetic Testing [abstract]. Am J Transplant. 2022; 22 (suppl 3). https://atcmeetingabstracts.com/abstract/development-of-a-culturally-sensitive-chatbot-to-inform-living-donor-candidates-of-african-ancestry-about-apol1-genetic-testing/. Accessed May 30, 2025.« Back to 2022 American Transplant Congress