Institutional Management for Privacy Protection and Informed Consent

Jian Guan ()
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Jian Guan: Peking Union Medical College Hospital, Peking Union Medical College (PUMC) & Chinese Academy of Medical Sciences (CAMS)

Chapter Chapter 7 in Governance and Management of Medical Scientific Data Sharing and Application, 2026, pp 201-233 from Springer

Abstract: Abstract Privacy protection and informed consent are two fundamental rights in the application of personal health information, including data sharing, which are subject to legal and ethical oversight. Privacy protection and informed consent face significant challenges, often clashing with data sharing practices and exhibiting contradictory relationships. This chapter presents our standards and methods for assessing the severity of private information and the potential risks of re-identification to provide a foundation for hierarchical management. Recommendations are provided for choosing informed consent models based on refined privacy conditions. Additionally, it investigates related factors and methods. Specifically, to determine the potential risks of re-identification, we innovatively introduced the concepts of ‘general technical personnel’ and ‘prior art’ as used in patent definitions. We suggest the ‘pre-engagement’ consent pathway as an active protective measure.

Keywords: Data governance; Hierarchical management; Privacy protection; Sensitive personal information; Informed consent; Digital consent; Prior art; Pre-engagement consent (search for similar items in EconPapers)
Date: 2026
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Persistent link: https://EconPapers.repec.org/RePEc:spr:sprchp:978-981-95-2806-6_7

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DOI: 10.1007/978-981-95-2806-6_7

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