Who invented digital consent systems?

The development of digital consent systems is less the story of a single inventor and more a chronicle of continuous, often reactive, evolution driven by the collision of medical ethics, regulatory mandates, and the ever-expanding complexity of digital life. While paper forms once ruled the process of granting permission—whether for a medical procedure or accessing a new service—the shift to digital involved a fragmented, multi-decade effort spearheaded by various technical standards groups, regulatory bodies, and critical legal scholars.

# Early Digital Standards

The need to move consent from paper to a computable, digital format was arguably first addressed with rigor in the healthcare sector. Here, the stakes tied to patient privacy and data exchange demanded early standardization that mirrored the seriousness of traditional informed consent.

A landmark starting point in this digital transition can be traced back to the Integrating the Healthcare Enterprise (IHE) initiative. Around 2006 to 2008, IHE pioneered the Basic Patient Privacy Consents (BPPC) standard. This was designed as a systematic way to capture high-level preferences regarding privacy across different organizations and Health Information Exchanges (HIEs). This initial digital foray was not about simple button-clicking; it was an attempt to translate nuanced legal and ethical permissions into standardized digital codes.

This foundation was built upon in the early-to-mid 2010s with the Advanced Patient Privacy Consents (APPC) standard, which aimed for finer-grained control, allowing policies for partial data sharing. It is noteworthy that the initial impetus for digital consent, especially in medicine, centered on granularity—the ability to precisely define what data could be shared and with whom—a level of detail consumer-facing systems rarely attempt.

Beyond this foundational work, specific systems were being built. In Korea, Seoul National University Hospital developed and implemented a computer-based informed consent system in December 2011. Recognizing that the computer-based system still left nearly 30% of consents manually filled out on paper, they further advanced the effort in 2013 by creating a mobile-based electronic informed consent system. The adoption of this mobile system dramatically increased the rate of electronic consent fulfillment from 69% to 95%, demonstrating the practical efficacy of integrating digital consent directly into common workflows.

# Conceptualization and Critique

While healthcare standards were maturing, the digital world of commercial websites and applications operated under the much looser “notice and choice” model, often enforced by the Federal Trade Commission (FTC) in the United States. This model frequently resulted in consent that fell far short of the "gold standard" of being truly knowing and voluntary.

The intellectual heavy lifting to define why this consumer-facing consent was failing began to coalesce in legal and academic circles. Key contributors to establishing a vocabulary for this problem include legal scholars like Neil Richards and Woodrow Hartzog. In 2019, their work introduced the concept of “the pathologies of consent,” offering a vital framework to distinguish between different types of flawed agreements: unwitting consent, coerced consent, and incapacitated consent. This analysis argued that the overuse of consent in contexts where choice is infrequent, risks are not vivid, or incentives to choose seriously are absent, makes consent pathological.

This period also saw the development of more formal, internationally recognized methods for capturing consent events. The Kantara Initiative designed its Consent Receipt between 2016 and 2017, which later gained global significance through its adoption into the ISO 29184 standard. Furthermore, the Office of the National Coordinator for Health Information Technology (ONC) led the LEAP Computable Consent Project around 2019, which explored machine-readable models based on the FHIR Consent resource. This research proved that computable consents could effectively capture and enforce privacy preferences across various health data exchange technologies.

The academic dissection of digital consent extends to how systems themselves are architected. Research emerging from institutions like the University of Michigan has explored Social Computing Systems Grounded in Affirmative Consent. This work theorizes affirmative consent as being voluntary, informed, specific, revertible, and unburdensome. Practical system development stemming from this research included redesigning online advertisement settings on platforms like Facebook and building a novel social media platform named Moa, which featured a “consent boundary” to let users precisely demarcate who could view their posts based on contextual dimensions. These efforts represent the cutting edge of attempting to engineer truly user-centric digital consent mechanisms.

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# Limits and Future Design

The conversation around digital consent is not just about who is building the systems, but whether the concept itself is fit for purpose at scale. Several reports and studies have emphasized that current methods often fail to account for the broader socio-technical realities of data collection.

One critical analysis notes that when designers focus only on mitigating immediate platform control—often by proposing “local-first” data storage—they inadvertently shift the risk onto the individual. If data is stored locally, the individual becomes the primary target for sophisticated adversaries, law enforcement searches, or theft, whereas a centralized organization has the security expertise to fight such access attempts. The notion that the inventor of a digital consent system can insulate users from all future misuse is undercut by this shift in risk, which is often ignored by simplified consent models.

The failure of the current digital consent paradigm—where users are expected to manage thousands of micro-decisions about complex, opaque data flows—is evident in the rise of what legal scholars call dark patterns. These manipulative interfaces, such as “confirmshaming” (e.g., a button labeled "no, I prefer to bleed to death" to opt out of notifications), are not bugs but features designed to exploit predictable human behavior, such as cognitive limitations or decision fatigue.

If we consider the early healthcare standards like BPPC, they established a precedent for digitalizing specific, high-stakes choices. The contemporary consumer system, however, has morphed this into something entirely different:

This comparison highlights that the technical architects who first developed digital consent in regulated spaces sought to replicate the strictness of paper, whereas the systems built for the mass market appear engineered to bypass its deliberation.

Ultimately, the question of who invented digital consent leads not to a single name but to a continuum of efforts: from the standards bodies like IHE and HL7 FHIR working to make healthcare data portable under strict rules, to the researchers developing computable consent resources and affirmative consent boundaries to try and repair the failures of the consumer model, and the legal minds who mapped out the resulting "pathologies". The path forward suggests a move away from consent as the primary justification, pivoting instead toward trust-based obligations that require custodians of data to act loyally, regardless of what a user might have clicked in haste.