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

TL;DR

This paper traces the historical evolution of informed consent from the 19th century to today, emphasizing its fluid nature and relevance for current data science and internet research ethics.

Contribution

It recovers historical insights on informed consent, highlighting its evolving nature and offering lessons for contemporary research ethics in data-intensive environments.

Findings

Informed consent has historically been a fluid and evolving concept.

Understanding its history can inform current research ethics debates.

Challenges of online informed consent are not unique but part of a long-standing evolution.

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.