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.

Student Consent in Learning Analytics

“…We do not claim to have the answers, but agree with Sedenberg and Hoffmann (2016) that there is a need to ask difficult questions about what individual freedom of choice really means when flows of online information are increasingly controlled by a few large internet companies with their own interests in mind. Despite a general consensus that it would be both impossible and impractical to apply conventional informed consent in ubiquitous learning environments, we should guard against allowing this to "distract us from heeding the key values (like autonomy or respect for persons) that consent was designed to support in the first place" (Sedenberg & Hoffmann, 2016, p. 26).…”

“…There is consensus that our understanding of ethics in research and, specifically, the notions of consent and informed consent are shaped by a biomedical model of ethics, as enshrined in the Belmont principles (Denzin & Giardina, 2007;Drachsler, 2016;Ferguson, Hoel, Scheffel, & Drachsler, 2016;Sedenberg & Hoffmann, 2016;Wilson, 2017). Though there are a few critical voices questioning the one-size-fits-all model of ethical guidelines for research (Denzin & Giardina, 2007;Manson & O'Neill, 2007), most literature refer to the biomedical roots of our understanding of consent and informed consent, which has changed little over the years.…”

Epidemiological statistical methods: A comparative review of their implementation in public health studies in the USA and Africa

“…The historical context of informed consent, as explored by Sedenberg and Hoffmann (2016), provides valuable insights into its evolution and current challenges in the digital age. Their work suggests that informed consent is not a static concept but one that needs continuous adaptation to align with technological advancements and societal norms.…”

“…Their work suggests that informed consent is not a static concept but one that needs continuous adaptation to align with technological advancements and societal norms. This adaptability is crucial in epidemiological research, where new forms of data collection and analysis are constantly emerging (Sedenberg & Hoffmann, 2016). Xiao et al (2023) investigate the role of AI-powered chatbots in enhancing the informed consent process in online settings.…”

Disparities in Students’ Propensity to Consent to Learning Analytics

“…Student consent is critical not only to demonstrate respect for them and their decisions, but also to support important values such as autonomy and freedom of choices (Sedenberg and Hoffmann 2016). Also, considering student consent is to acknowledge students' rights and voluntary collaboration to allow the collection and use of student data by learning analytics in supporting student learning (Slade and Prinsloo 2013).…”