Recovering the History of Informed Consent for Data Science and Internet Industry Research Ethics

Abstract: Respect for persons is a cornerstone value for any conception of research ethics--though how to best realize respect in practice is an ongoing question. In the late 19th and early 20th centuries, "informed consent" emerged as a particular way to operationalize respect in medical and behavioral research contexts. Today, informed consent has been challenged by increasingly advanced networked information and communication technologies (ICTs) and the massive amounts of data they produce--challenges that have led many researchers and private companies to abandon informed consent as untenable or infeasible online. Against any easy dismissal, we aim to recover insights from the history of informed consent as it developed from the late 19th century to today. With a particular focus on the United States policy context, we show how informed consent is not a fixed or monolithic concept that should be abandoned in view of new data-intensive and technological practices, but rather it is a mechanism that has always been fluid--it has constantly evolved alongside the specific contexts and practices it is intended to regulate. Building on this insight, we articulate some specific challenges and lessons from the history of informed consent that stand to benefit current discussions of informed consent and research ethics in the context of data science and Internet industry research.