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6 Geo. L. Tech. Rev. 1 (2022)

handle is hein.journals/gtltr6 and id is 1 raw text is: GEORGETOWN LAW TECHNOLOGY REVIEW IMPACT-BASED INFORMED CONSENT: WHAT PRIVACY LAWS CAN LEARN FROM THE ETHICS OF HUMAN SUBJECTS RESEARCH April Falcon Doss* CITE As: 6 GEO. L. TECH. REV. 1 (2022) ABSTRACT In the past twenty years, the rapid growth of data-intensive technologies such as smart devices and social media platforms has resulted in the collection and use of ever-expanding volumes and varieties ofpersonal information. Despite this fundamental reshaping of our relationship with technology, the legal framework for consent that underpins much of this data use has remained relatively static. Given the extraordinary impacts that data has on society and individuals, that framework should change. The traditional privacy and data protection framework relies heavily on notice-and-consent. In this regime, entities that collect and process personal information from individuals are generally required to tell users about the mechanics of what they do: what categories of information will be collected (e.g., online activity), how it may be used (e.g., to personalize ads or improve user experience), and with whom it may be shared (e.g., third-party partners and vendors). The explanations provided in these privacy notices and terms of service rarely, however, describe what the likely impact to individuals or to society will be. Looking at the widely reported example of Instagram teen mental health research alleged by whistleblower Frances Haugen, this paper argues that traditional privacy law has a great deal to learn from the guidelines for informed consent that applies in federally funded biomedical and behavioral research. Under that framework, researchers must notify research subjects not only of what * April Falcon Doss is the Executive Director of the Georgetown Institute for Technology Law and Policy, and author of the book Cyber Privacy: Who Has Your Data and Why You Should Care (BenBella, 2020), which won the Foreword Indies Award for best science or technology book published by a small or independent press in 2020. Prior to Georgetown, she was a partner at a major national law firm where she chaired the cybersecurity and privacy practice group; served as Senior Minority Counsel for the Russia Investigation in the United States Senate Select Committee on Intelligence; and spent over a decade at the National Security Agency where, among other positions, she served as Associate General Counsel for Intelligence Law.

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