Pandemics (2024 Sept)

Privacy Concerns Related to Using Chatbots to Inform Consent for Participation in Human Challenge Trials

By Julian Guidote (Published on January 27, 2025)

This project won the "Other exceptional project" prize on our Pandemics (Sept 2024) course. The text below is an excerpt from the final project.

Purpose: Why I’m Doing This

This memorandum explains the privacy implications of using a chatbot to inform consent for participating in human challenge trials (HCTs). I originally drafted it for an organizer of HCTs, so that they could modify their approach to privacy before submitting a request to a Research and Ethics board for approval to use this bot in 2025.

The hope is that chatbots will help ensure informed consent in HCTs. This improvement can inspire confidence in future HCTs, resulting in their increased adoption. That will help found a biosecure future.

This version of that original memorandum is submitted as a requirement for completing the BlueDot Impact’s September 2024 “Biosecurity Fundamentals” Course.

Background: How This Came Up

An organizer of human challenge studies is introducing a chatbot to help inform participants about consenting to take part in these trials. It's important to emphasize that the chatbot does not replace the existing procedures for providing information and obtaining consent. These traditional methods remain the official way to secure consent for the trial.

The chatbot is built on a customized version of OpenAI’s ChatGPT from an Enterprise account. While OpenAI supplies the basic language capabilities, the organizer has programmed the chatbot with specific information needed to inform consent. This was done by uploading relevant studies related to the disease being studied and by manually testing and refining (fine-tuning) the chatbot’s responses.

Participants can use the chatbot to ask questions about the trial and check their eligibility. All conversation transcripts are anonymized and not accessible to the organizer. However, OpenAI still manages the data in accordance with their Privacy Policy.

Full project

You can view the full project here.