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Evaluation On-Demand Video

2024 PRIM&R Annual Conference

Social, Behavioral, and Educational Research

Research Involving Data and New Technologies

IRB Review

A06 - Great “Private” Expectations: What Is Publicly Available Private Information?

Monday, November 18, 2024
10:30 AM – 11:45 AM PT
Location: Room 345-346
Live Session Recorded Human Subject Research - HSR Deep Dive Series Call for Session Proposal - CSP CIP Accredited
CLICK HERE to view captioning for this session! 

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? Furthermore, given the IRB's dual role in both regulatory and ethical review of research, determining whether it is ethical to use such data for research purposes can be challenging. This session will breakdown the types of data that exempt category 4(i) was intended for, help explain the confusion, and provide an ethical framework for its review.

Learning Objectives:

  • Consider the types of private information that are publicly available and the ethical considerations for its use (i.e., are there additional community risks that need to be assessed?)
  • Develop knowledge and understanding of what publicly available databases/datasets may look like that contain private information (i.e., how can it be considered private if the public can access it?)
  • Explore the key ethical considerations in establishing a framework for ethical review of research using such data