Meeting Summary
Presented on: December 12, 2024
This meeting was presented to the Bioethics Collaborative. The Bioethics Collaborative is a forum to propose, share, and discuss ethical challenges in multi-national clinical trials. Meetings convene individuals from academia, industry, patient/participant groups, ethics committees, government, and others.
Abstract: The December 2024 session of the MRCT Center’s Bioethics Collaborative, Is It Time to Retire the Concept of Deidentification?, convened experts to explore the limitations of current deidentification standards in the face of advancing technologies and evolving data landscapes. Participants examined the ethical and regulatory frameworks underpinning HIPAA and the Common Rule, debated the feasibility and implications of redefining “identifiability,” and emphasized the growing risk of reidentification, particularly for minoritized groups. Discussions underscored the need for greater public engagement, transparency, and nuanced protections that balance data utility with privacy, while considering interim policy approaches amid calls for systemic reform.