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2023 SBER Conference

Informed Consent

Research Conducted in the Digital World

SBER

Legal Considerations in Research Oversight

A03 - [IN-PERSON ONLY] Privacy on Display: What Kind of Private Information Is Open to the Public and How Does That Make Sense?

Sunday, December 3, 2023
10:15 AM – 11:15 AM ET
Location: Room 152A
Human Subjects Research Deep Dive Series CIP Accredited
This session is being held in-person only at SBER23. It will not be recorded for on-demand access or for the PRIMR23/SBER23 Virtual Meeting.

In an era of advancing technology and evolving expectations surrounding personal information, the research community faces new and complex ethical challenges. However, within the research oversight world, there has been confusion regarding the idea of private, identifiable information that is, at the same time, available to the public. How can this be? If it's available to the public, is it not by definition public data and not private? This session will breakdown the types of data that exempt category 4(i) was intended for and help explain the confusion.

Learning Objectives:

  • Address the confusion surrounding private information that is publicly available (i.e., how can it be considered private if the public can access it?)
  • Differentiate between private and non-private information available to the public (i.e., when would exempt 4(i) be needed as opposed to a not-human-subjects research determination being appropriate?)
  • Through case studies and scenarios, participants will have the opportunity to explore how exempt category 4(i) should be used.