Title: ALL OF US Should Be Concerned: What History Says We Should Expect from the Largest Medical Study in the Nation's History
Abstract: The All of Us Research Program, a plan to recruit 1,000,000 Americans and follow them for over a decade all while collecting intimate health information along the way, is currently rolling out across the United States. Participants are being recruited at hospitals across the country, including in Pittsburgh at UPMC. In this talk, I'll review the history of where this idea for a nationwide study originally came from, tracing it back to the conclusion of the Human Genome Project. That history, along with an examination of the program's current design, raises some troubling conclusions. It is being marketed to participants, politicians, and taxpayers as one thing, but it is in fact being designed as another. The disconnect between what is actual and what is being promised, I'll argue, is both dishonest and dangerous.