Privacy of Clinical Research Subjects: An Integrative Literature Review

Author:

Nurmi Sanna-Maria1,Kangasniemi Mari1,Halkoaho Arja23,Pietilä Anna-Maija14

Affiliation:

1. University of Eastern Finland, Kuopio, Finland

2. Kuopio University Hospital, Finland

3. Tampere University of Applied Sciences, Finland

4. Social and Health Care Services, Kuopio, Finland

Abstract

With changes in clinical research practice, the importance of a study-subject’s privacy and the confidentiality of their personal data is growing. However, the body of research is fragmented, and a synthesis of work in this area is lacking. Accordingly, an integrative review was performed, guided by Whittemore and Knafl’s work. Data from PubMed, Scopus, and CINAHL searches from January 2012 to February 2017 were analyzed via the constant comparison method. From 16 empirical and theoretical studies, six topical aspects were identified: the evolving nature of health data in clinical research, sharing of health data, the challenges of anonymizing data, collaboration among stakeholders, the complexity of regulation, and ethics-related tension between social benefits and privacy. Study subjects’ privacy is an increasingly important ethics principle for clinical research, and privacy protection is rendered even more challenging by changing research practice.

Funder

Finnish Cultural Foundation North Savo Regional Fund

Publisher

SAGE Publications

Subject

Communication,Education,Social Psychology

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