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Bridge2AI Discussion Forum on Emerging ELSI Issues: “Trust Starts Upstream: Recommendations for Creating Ethically Sourced Health Data Repositories for AI/ML”

January 20 @ 3:00 pm - 4:00 pm EST

Please join us on Tuesday, January 20th, 2026 at 12pm-1pm PST/3pm-4pm EST for the discussion forum: Trust Starts Upstream: Recommendations for creating ethically sourced health data repositories for AI/ML,” by Dr. Camille Nebeker.

Creating ethically sourced and trustworthy health data repositories is critical for building trustworthy biomedical and behavioral research infrastructure, especially when such repositories underpin machine learning and AI systems. In Ethical sourcing in the context of health data supply chain management: a value sensitive design approach (Nebeker et al., 2025), we integrate value sensitive design (VSD) with concepts from supply chain management to operationalize ethical values across the stages of developing health data repositories. The resulting framework identifies key actors, values (e.g., traceability, security, equity), and tensions that arise during repository creation and highlights practices such as documenting data provenance, articulating expectations for data stewards, and implementing comprehensive privacy and bias mitigation strategies.

During this session, Dr. Nebeker will provide an overview of this framework with a focus on developing a companion checklist that is grounded in VSD and supply chain scaffolding and can be used as actionable guidance in dataset creation.

Bio:

Dr. Camille Nebeker is a professor of public health with appointments in the UC San Diego Design Lab and the Herbert Wertheim School of Public Health and Human Longevity Science. In 2018, Dr. Nebeker co-founded the ReCODE Health center, which is dedicated to conducting cutting edge research to inform ethical practices in digital/AI health research – including machine learning and the use of large language models. The ReCODE Health center supports education and consultation services to guide ethical practices in technology-supported health research across diverse research sectors including traditional academic research and, increasingly, the health technology sector. She’s a principal investigator with the Bridge2AI Bridge Center’s Ethical, Legal and Social Implications Core.

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