Beyond the Common Rule: Ethical Structures for Data Research in Non-Academic Settings

Future of Privacy Forum: “In the wake of last year’s news about the Facebook “emotional contagion” study and subsequent public debate about the role of A/B Testing and ethical concerns around the use of Big Data, FPF Senior Fellow Omer Tene participated in a December symposum on corporate consumer research hosted by Silicon Flatirons. This past month, the Colorado Technology Law Journal published a series of papers that emerged out of the symposium, including “Beyond the Common Rule: Ethical Structures for Data Research in Non-Academic Settings.”

“Beyond the Common Rule,” by Jules Polonetsky, Omer Tene, and Joseph Jerome, continues the Future of Privacy Forum’s effort to build on the notion of consumer subject review boards first advocated by Ryan Calo at FPF’s 2013 Big Data symposium. It explores how researchers, increasingly in corporate settings, are analyzing data and testing theories using often sensitive personal information. Many of these new uses of PII are simply natural extensions of current practices, and are either within the expectations of individuals or the bounds of the FIPPs. Yet many of these projects could involve surprising applications or uses of data, exceeding user expectations, and offering notice and obtaining consent could may not be feasible.

This article expands on ideas and suggestions put forward around the recent discussion draft of the White House Consumer Privacy Bill of Rights, which espouses “Privacy Review Boards” as a safety value for noncontextual data uses. It explores how existing institutional review boards within the academy and for human testing research could offer lessons for guiding principles, providing accountability and enhancing consumer trust, and offers suggestions for how companies — and researchers — can pursue both knowledge and data innovation responsibly and ethically….(More)”