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

Authors

Sarah K. Savage, Invitae Corporation, San Francisco, CA, United States.
Jonathan LoTempio, Institute for Clinical and Translational Science, University of California, Irvine, CA, United States.
Erica D. Smith, Invitae Corporation, San Francisco, CA, United States.
E Hallie Andrew, Division of Genetics and Metabolism, Children's National Rare Disease Institute, Washington, DC, United States.
Gloria Mas, Invitae Corporation, San Francisco, CA, United States.
Amanda H. Kahn-Kirby, Invitae Corporation, San Francisco, CA, United States.
Emmanuèle Délot, Center for Genetic Medicine Research, Children's National Research Institute, Washington, DC, United States.
Andrea J. Cohen, Center for Genetic Medicine Research, Children's National Research Institute, Washington, DC, United States.
Georgia Pitsava, Center for Genetic Medicine Research, Children's National Research Institute, Washington, DC, United States.
Robert Nussbaum, Invitae Corporation, San Francisco, CA, United States.
Vincent A. Fusaro, Invitae Corporation, San Francisco, CA, United States.
Seth Berger, Division of Genetics and Metabolism, Children's National Rare Disease Institute, Washington, DC, United States.
Eric Vilain, Institute for Clinical and Translational Science, University of California, Irvine, CA, United States.

Document Type

Journal Article

Publication Date

9-4-2023

Journal

Journal of the American Medical Informatics Association : JAMIA

DOI

10.1093/jamia/ocad181

Keywords

chatbot; genetic counseling; genomics; informed consent; large-scale research

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.

APA Citation

Savage, Sarah K.; LoTempio, Jonathan; Smith, Erica D.; Andrew, E Hallie; Mas, Gloria; Kahn-Kirby, Amanda H.; Délot, Emmanuèle; Cohen, Andrea J.; Pitsava, Georgia; Nussbaum, Robert; Fusaro, Vincent A.; Berger, Seth; and Vilain, Eric, "Using a chat-based informed consent tool in large-scale genomic research" (2023). GW Authored Works. Paper 3458.
https://hsrc.himmelfarb.gwu.edu/gwhpubs/3458

Department

Genomics and Precision Medicine