Has Informed Consent Outrun its Usefulness?

• Activity Number: 115
• Type: Invited
• Date/Time: Monday, August 10, 2015 : 8:30 AM to 10:20 AM
• Sponsor: Committee on Privacy and Confidentiality
• Author(s): Frauke Kreuter* and Julia Lane* and Marjory Blumenthal* and Helen Nissenbaum*
• Companies: American Institutes for Research and Joint Program in Survey Methodology and New York University and Office of Science and Technology Policy

Abstract

The use of informed consent as an adequate mechanism for resolving privacy concerns continues to change with the expanded role of technology in collecting information across many sectors of society. Today, large amounts of data are collected from individuals without their knowledge. Examples include roadside Bluetooth readers used to measure travel times, images of buildings showing whose lights are on, and web browsing histories. Much of this information is, or has the potential to be, personally identifiable. Equally important, uses of data can no longer be narrowly delimited at the time of collection. Repurposing of data is widespread as researchers access databases from interrelated fields of study. To illustrate, data collected fifty years ago under the auspices of Project Talent are being used now to understand the lifetime social and economic trajectories of baby boomers, many of whom are retiring. Can adequate notice be given to data subjects at the time of collection so that consent truly is based on an informed decision in this age of Big Data collections and the development of new mechanisms for expanded researcher access? The session will address the current status and future role of informed consent in light of these developments from multiple perspectives.