What the Publisher Can Teach the Patient: Intellectual Property and Privacy in an Era of Trusted Privication

Jonathan Zittrain

doi:10.2139/ssrn.214468

Abstract

This article begins with a premise that intellectual property and privacy have something significant and yet understated in common: both are about balancing a creator's desire to control a particular set of data with consumers' desires to access and redistribute that data. Both law and technology influence such balancing, making it more or less palatable to use data for particular purposes--whether one is an individual making a copy of a popular song for a friend, or a hospital selling a list of maternity ward patients to a day care service. In the shadow of the Internet's rapid development and concomitant easing of barriers to data sharing, holders of intellectual property are pairing increased legal protection with the technologies of "trusted systems." I describe how these technologies might allow more thorough mass distribution of data, while allowing publishers to retain unprecedented control over their wares. For instance, an e-Book seller might charge one price for a read-only copy that could not be printed or forwarded and charge an additional fee for each copy or printout made. Taking up the case of medical privacy, I then suggest that those who worry about the confidentiality of medical records, particularly as they are digitized by recent congressional mandate, might seek to augment comparatively paltry legal protections with trusted systems technologies. For instance, a trusted system could allow a patient to specify how and by whom her records could be used; within limits, she could allow full access to her primary care physician, while allowing only time-limited access to emergency care providers, non-personally identifiable access to medical researchers, and no access at all for marketing purposes. These technologies could allow for new kinds of privacy protection, without sacrificing the legitimate interests of the consumers of medical records.

Highlights

Individuals have long had the desire but little ability to control the dissemination of personal information about their health
Law has been a weak instrument for such control, given the articulate and powerful interests that insist upon maintaining and enhancing access and use of others' personal information, with sensitive medical data proving only a sporadic exception
The evolving federal framework for the protection of electronic medical records is, at the moment, one in which individuals are third-party beneficiaries of what are likely to be flexibly-interpreted, ponderously-enforced fair information practices created in the shadow of a Congressionally-mandated networking of sensitive medical data

Summary

Introduction

Individuals have long had the desire but little ability to control the dissemination of personal information about their health. The evolving federal framework for the protection of electronic medical records is, at the moment, one in which individuals are third-party beneficiaries of what are likely to be flexibly-interpreted, ponderously-enforced fair information practices created in the shadow of a Congressionally-mandated networking of sensitive medical data This networking promises to greatly lower the costs of accessing and using medical data for any number of purposes—including ones not central to health care, such as direct marketing. In my view there is a profound relationship between those who wish to protect intellectual property and those who wish to protect privacy Their common desire to control the distribution of information, and the music industry’s potential. The Music Industry: A Trajectory of Intellectual Property Worries—and Responses to Them—in a Digitally Networked Environment

A New Problem

Lessons from the publisher

Beyond the publisher

Conclusion