Ethical Considerations in Real World Evidence Data Technology
Date & Time
Monday, May 22, 2023, 2:00 PM - 3:30 PM
Location Name
Congress B-C (4th Fl)

Data sharing and transparency is now required for NIH-funded research as of January, 2023, and FDA published draft guidance, “Considerations for the Design and Conduct of Externally Controlled Trials for Drug and Biological Products” in February 2023. As more human data sets are published and researchers seek to use that data to drive new insights, how will we ensure research participants protected? The panelists will describe emerging data uses and technologies for linking participants across datasets including tokens, a method of de-identifying, linking, and matching individuals based on their data. The panel will discuss the ethical implications of these technologies in research protocols and informed consent. The session will provide insight from IRBs, healthcare institutions, and data management companies, on questions IRBs, leaders of research institutions, and privacy boards may have about the ethical considerations around privacy, consent, and data validity when using tokens to link data.

Kelly FitzGerald Ryan Moog Don Workman
CIP CEU Credits