Consumer Subject Review Boards: A Thought Experiment

The adequacy of consumer privacy law in America is a constant topic of debate. The majority position is that United States privacy law is a “patchwork,” that the dominant model of notice and choice has broken down, and that decades of self-regulation have left the fox in charge of the henhouse. A minority position chronicles the sometimes surprising efficacy of our current legal infrastructure. But the challenges posed by big data to consumer protection feel different. They seem to gesture beyond privacy’s foundations or buzzwords, beyond “fair information practice principles” or “privacy by design.” The challenges of big data may take us outside of privacy altogether into a more basic discussion of the ethics of information. The good news is that the scientific community has been heading down this road for thirty years. I explore a version of their approach here. Part I discusses why corporations study consumers so closely, and what harm may come of the resulting asymmetry of information and control. Part II explores how established ethical principles governing biomedical and behavioral science might interact with consumer privacy