Alan Rubel

Privacy and confidentiality in pragmatic clinical trials

With pragmatic clinical trials, an opportunity exists to answer important questions about the relative risks, burdens, and benefits of therapeutic interventions. However, concerns about protecting the privacy of this information are significant and must be balanced with the imperative to learn from the data gathered in routine clinical practice. Traditional privacy protections for research uses of identifiable information rely disproportionately on informed consent or authorizations, based on a presumption that this is necessary to fulfill ethical principles of respect for persons. But frequently, the ideal of informed consent is not realized in its implementation. Moreover, the principle of respect for persons—which encompasses their interests in health information privacy—can be honored through other mechanisms. Data anonymization also plays a role in protecting privacy but is not suitable for all research, particularly pragmatic clinical trials. In this article, we explore both the ethical foundation and regulatory framework intended to protect privacy in pragmatic clinical trials. We then review examples of novel approaches to respecting persons in research that may have the added benefit of honoring patient privacy considerations.

Libraries, Electronic Resources, and Privacy: The Case for Positive Intellectual Freedom

Public and research libraries have long provided resources in electronic formats, and the tension between providing electronic resources and patron privacy is widely recognized. But assessing trade-offs between privacy and access to electronic resources remains difficult. One reason is a conceptual problem regarding intellectual freedom. Traditionally, the LIS literature has plausibly understood privacy as a facet of intellectual freedom. However, while certain types of electronic resource use may diminish patron privacy, thereby diminishing intellectual freedom, the opportunities created by such resources also appear liberty enhancing. Adjudicating between privacy loss and enhanced opportunities on intellectual freedom grounds must therefore provide an account of intellectual freedom capable of addressing both privacy and opportunity. I will argue that intellectual freedom is a form of positive freedom, where a person’s freedom is a function of the quality of her agency. Using this view as the lodestar, I articulate several principles for assessing adoption of electronic resources and privacy protections.

A framework for analyzing and comparing privacy states

This article develops a framework for analyzing and comparing privacy and privacy protections across (inter alia) time, place, and polity and for examining factors that affect privacy and privacy protection. This framework provides a method to describe precisely aspects of privacy and context and a flexible vocabulary and notation for such descriptions and comparisons. Moreover, it links philosophical and conceptual work on privacy to social science and policy work and accommodates different conceptions of the nature and value of privacy. The article begins with an outline of the framework. It then refines the view by describing a hypothetical application. Finally, it applies the framework to a real‐world privacy issue—campaign finance disclosure laws in the United States and France. The article concludes with an argument that the framework offers important advantages to privacy scholarship and for privacy policy makers.

Justifying Public Health Surveillance: Basic Interests, Unreasonable Exercise, and Privacy

Surveillance plays a crucial role in public health and for obvious reasons conflicts with individual privacy. This article argues that the predominant approach to the conflict—relying on a conceptual distinction between research and practice—is problematic and then offers an alternative. It outlines a basic interests approach to public health measures and an unreasonable exercise argument, which sets forth conditions under which individuals may justifiably exercise individual privacy claims that conflict with public health goals. The view articulated is compatible with a broad range of conceptions of the value of health.

Four Facets of Privacy and Intellectual Freedom in Licensing Contracts for Electronic Journals

This is a study of the treatment of library patron privacy in licenses for electronic journals in academic libraries. We begin by distinguishing four facets of privacy and intellectual freedom based on the LIS and philosophical literature. Next, we perform a content analysis of 42 license agreements for electronic journals, focusing on terms for enforcing authorized use and collection and sharing of user data. We compare our findings to model licenses, to recommendations proposed in a recent treatise on licenses, and to our account of the four facets of intellectual freedom. We find important conflicts with each.

A framework for comparing privacy states

This paper offers a framework for analyzing and comparing privacy and privacy protections across (inter alia) time, place, and polity and for examining factors that affect privacy and privacy protection. This framework provides a way to describe precisely aspects of privacy and context and a flexible vocabulary and notation for such descriptions and comparisons. Moreover, it links philosophical and conceptual work on privacy to social science and policy work and accommodates different conceptions of the nature and value of privacy. The paper begins with an outline of the framework. It then refines the view by describing a hypothetical application. The paper concludes with an argument that the framework offers important advantages to privacy scholarship and for privacy policy makers.