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

IF 1.5 Q4 GENETICS & HEREDITY Journal of Community Genetics Pub Date : 2024-04-01 Epub Date: 2024-02-13 DOI:10.1007/s12687-024-00698-8
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
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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.

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开发具有文化针对性的聊天机器人,为非洲裔活体肾脏捐献者候选人提供有关 APOL1 基因检测的信息:一项混合方法研究。
临床聊天机器人越来越多地被用于帮助将基因检测整合到临床环境中,但目前还没有聊天机器人用于非洲裔活体肾脏捐献者(LKD)候选人的载脂蛋白 L1(APOL1)基因检测。我们的研究旨在对 Gia® 聊天机器人进行文化调整和评估,以帮助将载脂蛋白 L1 检测纳入 LKD 评估。我们与 54 名非洲裔 LKD、社区成员和肾移植受者进行了 10 次焦点小组讨论和焦点小组讨论后调查。通过主题分析和描述性统计对数据进行了分析。关于如何使 Gia 具有文化针对性的关键主题包括:(1)通过提供黑人 LKD 的见证、解释患者隐私和保密保护措施以及说明基因检测如何帮助 LKD 评估,确保透明度;(2)通过向黑人 LKD 介绍 APOL1 检测而不是说服他们接受检测、提供统计数据以及说明如何从法律上防止基因歧视,确保内容具有信息性;以及(3)内容避免黑人社区对活体捐献的污名化。大多数人认为 Gia 是中立和无偏见的(82%),值得信赖(82%),字词、短语和表达方式为目标受众所熟悉(85%)。我们经过文化调整的 APOL1 Gia 聊天机器人广受好评。未来的研究应评估该聊天机器人如何在基因检测前对提供者的讨论进行补充,从而为 LKD 候选者的临床评估提供 APOL1 咨询和检测。
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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
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