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Book Chapter

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Transparency is one of the key concepts of privacy protection. Transparency means openness about data collection, use, and retention. Individuals need to know what information about them is being collected, how it is being collected, how it is to be used and shared, how it is protected, what has been learned from data use, how what has been learned might benefit them, and how they can seek correction or redress for security breaches or other unjustified uses or disclosures of data. This chapter begins with a highly salient recent example of transparency in action: the principled commitment to transparency in the precision medicine initiative (PMI) and the limited extent to which it has been developed in the initiative to date. The chapter then provides an overview of justifications for transparency and challenges inherent in providing consumers with understanding that is meaningful to them. The chapter then considers methods for achieving transparency through publication or notice and what is known about the success or failure of these methods. For example, privacy notices have grown bloated and legalistic; patients rarely read them and if they do, they do not understand them. The chapter concludes with a discussion of emerging solutions.

2017-Transparency-Table.docx (86 kB)
Table 4.1: Comments to ONC on Revising Model Privacy Notice: References to Transparency