ELSI and the Philosophy of Science

Abstract

Clinical studies that run over the Internet, if they are not supported or regulated by a federal agency, are generally not covered by the Common Rule, which protects (among other things) the privacy and confidentiality of information obtained from the human subjects of research. Instead, Internet-leveraged clinical studies improvise a variety of their own protocols to protect research subjects from "informational risk." These protocols generally put less emphasis on the analysis of big data and more emphasis on the history of particular cases. The protocols chosen to manage informational risk might then reflect and reinforce assumptions about the philosophy of science and about the progress of medicine.