A2 Refereed review article in a scientific journal
Privacy of clinical research subjects: An integrative literature review
Authors: Nurmi S-M, Kangasniemi M, Halkoaho A, Pietilä A-M
Publication year: 2019
Journal: Journal of Empirical Research on Human Research Ethics
Volume: 14
Issue: 1
Number of pages: 16
ISSN: 1556-2646
DOI: https://doi.org/10.1177/1556264618805643
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.