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Evaluation On-Demand Video

2024 PRIM&R Annual Conference

Research Involving Data and New Technologies

IRB Review

Emerging Research Challenges and Breaking Issues

D09 - The Shifting Paradigm of Data Sharing: Navigating New Challenges Through a Participant-Centered Lens

Tuesday, November 19, 2024
10:30 AM – 11:45 AM PT
Location: Room 423-425
Human Subject Research - HSR Live Session Recorded Deep Dive Series Call for Session Proposal - CSP CIP Accredited Live Streamed Session
CLICK HERE to view captioning for this session! 

Recent changes to federal guidelines set the expectation for researchers to bank study data for purposes of fostering future research. However, ethical guidelines developed before this paradigm shift do not provide clear guidance for how researchers should proceed with sharing different types of data, for example, images and other data that may be challenging to de-identify in a way that appropriately protects participants while still achieving the important goals of data sharing. This session will examine emerging ethical challenges that arise for different types of data, explore participant values and expectations about data sharing, and propose next steps for participant-centered data protections.

Learning Objectives:

  • Discuss the implications of new data sharing requirements for researchers and IRBs
  • Describe participant perspectives on data sharing, including unique considerations based on type of data and condition of study
  • Identify opportunities to better align data sharing and consent practices with participant values