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2023 PRIM&R Annual Conference

Research Involving Data and Biospecimens

Emerging Research Challenges and Breaking Issues

A10 - [IN-PERSON ONLY] Ethical Considerations in the Management of Research Data Using Tokens Session

Monday, December 4, 2023
1:00 PM – 2:00 PM ET
Location: Room 209 BC
Human Subjects Research Call for Session Proposal Deep Dive Series CIP Accredited
This session is being held in-person only at PRIMR23. It will not be recorded for on-demand access or for the PRIMR23/SBER23 Virtual Meeting.

The session will describe emerging data uses in synthetic data and token technologies and the ethical implications of these technologies in research protocols. The session will introduce the concept of token technology and describe token technology and its relationship to synthetic data. Speakers will discuss PHI in regard to synthetic data and if it is a HIPAA compliant method for deidentification, and will discuss the technology's impact on privacy and how it may or may not support the human subjects research regulatory framework we have now. This session will provide insight from IRBs, healthcare institutions, and pharma on questions IRBs, institutional officials, and privacy boards may have about the ethical considerations around privacy, consent, and data validity when using tokens and synthetic data in research and clinical trials.  

Learning Objectives:

  • Discuss ethical issues of data management technologies, including tokens and synthetic data
  • Explore how new data management technologies such as tokens and synthetic data impact privacy, consent, and data validity
  • Evaluate best practices for considering protocols utilizing tokens for ethical and regulatory review