Development of a culturally targeted chatbot to inform living kidney donor candidates of African ancestry about APOL1 genetic testing: a mixed methods study

Elisa J. Gordon*, Jessica Gacki-Smith, Matthew J. Gooden, Preeya Waite, Rochell Yacat, Zenab R. Abubakari, Debra Duquette, Akansha Agrawal, John Friedewald, Sarah K. Savage, Matthew Cooper, Alexander Gilbert, Lutfiyya N. Muhammad, Catherine Wicklund

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

3 Scopus citations

Abstract

Clinical chatbots are increasingly used to help integrate genetic testing into clinical contexts, but no chatbot exists for Apolipoprotein L1 (APOL1) genetic testing of living kidney donor (LKD) candidates of African ancestry. Our study aimed to culturally adapt and assess perceptions of the Gia® chatbot to help integrate APOL1 testing into LKD evaluation. Ten focus groups and post-focus group surveys were conducted with 54 LKDs, community members, and kidney transplant recipients of African ancestry. Data were analyzed through thematic analysis and descriptive statistics. Key themes about making Gia culturally targeted included ensuring: (1) transparency by providing Black LKDs’ testimonials, explaining patient privacy and confidentiality protections, and explaining how genetic testing can help LKD evaluation; (2) content is informative by educating Black LKDs about APOL1 testing instead of aiming to convince them to undergo testing, presenting statistics, and describing how genetic discrimination is legally prevented; and (3) content avoids stigma about living donation in the Black community. Most agreed Gia was neutral and unbiased (82%), trustworthy (82%), and words, phrases, and expressions were familiar to the intended audience (85%). Our culturally adapted APOL1 Gia chatbot was well regarded. Future research should assess how this chatbot could supplement provider discussion prior to genetic testing to scale APOL1 counseling and testing for LKD candidate clinical evaluation.

Original languageEnglish (US)
Pages (from-to)205-216
Number of pages12
JournalJournal of Community Genetics
Volume15
Issue number2
DOIs
StatePublished - Apr 2024

Funding

The authors thank all the participants who agreed to take part in the research study. This work was funded by the NIH/National Institute of Diabetes and Digestive and Kidney Diseases (R01DK128207, PI: Gordon). The authors wish to thank our collaborators from the study\u2019s Community Advisory Board in Chicago, IL (Phalese Binion, Jacqueline Burgess-Bishop, Calmetta Coleman, Vea Crawford, Monica Fox, Joann Howard-Burden, Marion Shuck, George Wells) and the Association for Multicultural Affairs in Transplantation in Washington, DC; the dedicated research teams at Northwestern University and Georgetown University; and the scientific consultants on this project (Mona Doshi, MD, Charmaine Royal, PhD, Richard R. Sharp, PhD) for providing sage guidance. This study was funded by The NIH/National Institute of Diabetes and Digestive and Kidney Diseases (R01DK128207, PI: Elisa Gordon).

Keywords

  • Adaptation
  • African American
  • Black
  • Community engagement
  • Digital health technologies
  • Equity
  • Evaluation
  • Focus groups
  • Genetic counseling
  • Informed consent
  • Nephrology
  • Patient-centered
  • Scaling
  • Transplantation

ASJC Scopus subject areas

  • Epidemiology
  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)

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