Using a chat-based informed consent tool in large-scale genomic research

Author:

Savage Sarah K1,LoTempio Jonathan2,Smith Erica D1ORCID,Andrew E Hallie34,Mas Gloria1,Kahn-Kirby Amanda H12,Délot Emmanuèle45,Cohen Andrea J4,Pitsava Georgia4,Nussbaum Robert1,Fusaro Vincent A12,Berger Seth345,Vilain Eric245ORCID

Affiliation:

1. Invitae Corporation , San Francisco, CA, United States

2. Institute for Clinical and Translational Science, University of California , Irvine, CA, United States

3. Division of Genetics and Metabolism, Children's National Rare Disease Institute , Washington, DC, United States

4. Center for Genetic Medicine Research, Children's National Research Institute , Washington, DC, United States

5. Department of Genomics and Precision Medicine, George Washington University , Washington, DC, United States

Abstract

Abstract Objective We implemented a chatbot consent tool to shift the time burden from study staff in support of a national genomics research study. Materials and Methods We created an Institutional Review Board-approved script for automated chat-based consent. We compared data from prospective participants who used the tool or had traditional consent conversations with study staff. Results Chat-based consent, completed on a user’s schedule, was shorter than the traditional conversation. This did not lead to a significant change in affirmative consents. Within affirmative consents and declines, more prospective participants completed the chat-based process. A quiz to assess chat-based consent user understanding had a high pass rate with no reported negative experiences. Conclusion Our report shows that a structured script can convey important information while realizing the benefits of automation and burden shifting. Analysis suggests that it may be advantageous to use chatbots to scale this rate-limiting step in large research projects.

Funder

Children’s National Research Institute, Invitae Corporation

University of California Irvine

National Human Genome Research Institute

The Institute for Clinical and Translational Science

University of California

National Center for Advancing Translational Sciences

NIH

Publisher

Oxford University Press (OUP)

Subject

Health Informatics

Cited by 2 articles. 订阅此论文施引文献 订阅此论文施引文献,注册后可以免费订阅5篇论文的施引文献,订阅后可以查看论文全部施引文献

1. The Role of Artificial Intelligence in Nephrology Clinical Trials;Journal of the American Society of Nephrology;2024-08-13

2. Should Chatbots Be Used to Obtain Informed Consent for Research?;Ethics & Human Research;2023-11

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