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“Development and Implementation of Novel Chatbot-based Genomic Research Consent”

View ORCID ProfileErica D. Smith, Sarah K. Savage, E. Hallie Andrew, Gloria Mas Martin, View ORCID ProfileAmanda H. Kahn-Kirby, View ORCID ProfileJonathan LoTempio, Emmanuèle Délot, Andrea J. Cohen, View ORCID ProfileGeorgia Pitsava, View ORCID ProfileSeth Berger, Vincent A. Fusaro, View ORCID ProfileEric Vilain
doi: https://doi.org/10.1101/2023.01.23.525221
Erica D. Smith
aInvitae Corporation, San Francisco, CA, USA
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Sarah K. Savage
aInvitae Corporation, San Francisco, CA, USA
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E. Hallie Andrew
bChildren’s National Rare Disease Institute, Division of Genetics and Metabolism, Washington, DC, USA
cCenter for Genetic Medicine Research, Children’s National Research Institute, Washington, DC, USA
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Gloria Mas Martin
aInvitae Corporation, San Francisco, CA, USA
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Amanda H. Kahn-Kirby
aInvitae Corporation, San Francisco, CA, USA
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Jonathan LoTempio
dInstitute for Clinical and Translational Science, University of California, Irvine, CA, USA
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Emmanuèle Délot
cCenter for Genetic Medicine Research, Children’s National Research Institute, Washington, DC, USA
eDepartment of Genomics and Precision Medicine, George Washington University, Washington, DC, USA
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Andrea J. Cohen
cCenter for Genetic Medicine Research, Children’s National Research Institute, Washington, DC, USA
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Georgia Pitsava
cCenter for Genetic Medicine Research, Children’s National Research Institute, Washington, DC, USA
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  • ORCID record for Georgia Pitsava
Seth Berger
bChildren’s National Rare Disease Institute, Division of Genetics and Metabolism, Washington, DC, USA
cCenter for Genetic Medicine Research, Children’s National Research Institute, Washington, DC, USA
eDepartment of Genomics and Precision Medicine, George Washington University, Washington, DC, USA
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Vincent A. Fusaro
aInvitae Corporation, San Francisco, CA, USA
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Eric Vilain
cCenter for Genetic Medicine Research, Children’s National Research Institute, Washington, DC, USA
dInstitute for Clinical and Translational Science, University of California, Irvine, CA, USA
eDepartment of Genomics and Precision Medicine, George Washington University, Washington, DC, USA
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  • For correspondence: Evilain@uci.edu
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ABSTRACT

Objective To conduct a retrospective analysis comparing traditional human-based consenting to an automated chat-based consenting process.

Materials and Methods We developed a new chat-based consent using our IRB-approved consent forms. We leveraged a previously developed platform (Gia®, or “Genetic Information Assistant”) to deliver the chat content to candidate participants. The content included information about the study, educational information, and a quiz to assess understanding. We analyzed 144 families referred to our study during a 6-month time period. A total of 37 families completed consent using the traditional process, while 35 families completed consent using Gia.

Results Engagement rates were similar between both consenting methods. The median length of the consent conversation was shorter for Gia users compared to traditional (44 vs. 76 minutes). Additionally, the total time from referral to consent completion was faster with Gia (5 vs. 16 days). Within Gia, understanding was assessed with a 10-question quiz that most participants (96%) passed. Feedback about the chat consent indicated that 86% of participants had a positive experience.

Discussion Using Gia resulted in time savings for both the participant and study staff. The chatbot enables studies to reach more potential candidates. We identified five key features related to human-centered design for developing a consent chat.

Conclusion This analysis suggests that it is feasible to use an automated chatbot to scale obtaining informed consent for a genomics research study. We further identify a number of advantages when using a chatbot.

Competing Interest Statement

EDS, SKS, GMM, AHKK, and VAF are full time employees and stockholders of Invitae Corporation.

Footnotes

  • ↵* Co-first authorship

Copyright 
The copyright holder for this preprint is the author/funder, who has granted bioRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY-NC-ND 4.0 International license.
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Posted January 24, 2023.
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“Development and Implementation of Novel Chatbot-based Genomic Research Consent”
Erica D. Smith, Sarah K. Savage, E. Hallie Andrew, Gloria Mas Martin, Amanda H. Kahn-Kirby, Jonathan LoTempio, Emmanuèle Délot, Andrea J. Cohen, Georgia Pitsava, Seth Berger, Vincent A. Fusaro, Eric Vilain
bioRxiv 2023.01.23.525221; doi: https://doi.org/10.1101/2023.01.23.525221
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“Development and Implementation of Novel Chatbot-based Genomic Research Consent”
Erica D. Smith, Sarah K. Savage, E. Hallie Andrew, Gloria Mas Martin, Amanda H. Kahn-Kirby, Jonathan LoTempio, Emmanuèle Délot, Andrea J. Cohen, Georgia Pitsava, Seth Berger, Vincent A. Fusaro, Eric Vilain
bioRxiv 2023.01.23.525221; doi: https://doi.org/10.1101/2023.01.23.525221

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