The Consent Myth: Improving Choice for Patients of the Future

Abstract

Consent has enjoyed a prominent position in the American privacy system since at least 1970, though historically, consent emerged from traditional notions of tort and contract. Largely because consent has an almost deferential power as a proxy for consumer choice, organizations increasingly use consent as a de facto standard for demonstrating privacy commitments. The Department of Health and Human Services and the Federal Trade Commission have integrated the concept of consent into health care, research, and general commercial activities. Despite consent’s prominence in U.S. law, this article seeks to understand, more fully, consent’s origins and development, then applies a philosophical-legal lens to clearly identify problems with consent in its current use. Jürgen Habermas’ theory of communicative action as it applies to private and public spheres and Helen Nissenbaum’s model for contextual inquiry provide useful lenses for understanding the impact of consent on human autonomy. This article suggests five resulting problems for human autonomy, the “consent myth,” and four principles for addressing these problems in contemporary health technologies, such as Internet of Health Things (IoHT) and artificial intelligence (AI) applications.

Keywords: Privacy, HIPAA, FTC, Informed Consent, Consent, Authorization, Artificial Intelligence, Internet of Things, Fairness, Data Protection