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Institutional review boards' use and understanding of certificates of confidentiality.

dc.contributor.author Beskow, Laura M
dc.contributor.author Check, Devon K
dc.contributor.author Namey, Emily E
dc.contributor.author Dame, Lauren A
dc.contributor.author Lin, Li
dc.contributor.author Cooper, Alexandra
dc.contributor.author Weinfurt, Kevin P
dc.contributor.author Wolf, Leslie E
dc.date.accessioned 2020-06-19T16:00:07Z
dc.date.available 2020-06-19T16:00:07Z
dc.date.issued 2012-01
dc.identifier PONE-D-12-15979
dc.identifier.issn 1932-6203
dc.identifier.issn 1932-6203
dc.identifier.uri https://hdl.handle.net/10161/21077
dc.description.abstract Certificates of Confidentiality, issued by agencies of the U.S. government, are regarded as an important tool for meeting ethical and legal obligations to safeguard research participants' privacy and confidentiality. By shielding against forced disclosure of identifying data, Certificates are intended to facilitate research on sensitive topics critical to the public's health. Although Certificates are potentially applicable to an extensive array of research, their full legal effect is unclear, and little is known about stakeholders' views of the protections they provide. To begin addressing this challenge, we conducted a national survey of institutional review board (IRB) chairs, followed by telephone interviews with selected chairs, to learn more about their familiarity with and opinions about Certificates; their institutions' use of Certificates; policies and practices concerning when Certificates are required or recommended; and the role Certificates play in assessments of research risk. Overall, our results suggest uncertainty about Certificates among IRB chairs. On most objective knowledge questions, most respondents chose the incorrect answer or 'unsure'. Among chairs who reported more familiarity with Certificates, composite opinion scores calculated based on five survey questions were evenly distributed among positive, neutral/middle, and negative views. Further, respondents expressed a variety of ideas about the appropriate use of Certificates, what they are intended to protect, and their effect on research risk. Nevertheless, chairs who participated in our study commonly viewed Certificates as a potentially valuable tool, frequently describing them as an 'extra layer' of protection. These findings lead to several practical observations concerning the need for more stakeholder education about Certificates, consideration of Certificates for a broader range of studies, the importance of remaining vigilant and using all tools available to protect participants' confidentiality, and the need for further empirical investigation of Certificates' effect on researchers and research participants.
dc.language eng
dc.publisher Public Library of Science (PLoS)
dc.relation.ispartof PloS one
dc.relation.isversionof 10.1371/journal.pone.0044050
dc.subject Humans
dc.subject Data Collection
dc.subject Disclosure
dc.subject Confidentiality
dc.subject Research
dc.subject Privacy
dc.subject Ethics Committees, Research
dc.subject Ethics, Research
dc.subject Middle Aged
dc.subject Research Personnel
dc.subject United States
dc.subject Female
dc.subject Male
dc.title Institutional review boards' use and understanding of certificates of confidentiality.
dc.type Journal article
duke.contributor.id Beskow, Laura M|0408666
duke.contributor.id Check, Devon K|0543201
duke.contributor.id Cooper, Alexandra|0230503
duke.contributor.id Weinfurt, Kevin P|0232646
dc.date.updated 2020-06-19T16:00:06Z
pubs.begin-page e44050
pubs.issue 9
pubs.organisational-group Faculty
pubs.organisational-group Duke
pubs.organisational-group School of Medicine
pubs.organisational-group Psychology and Neuroscience
pubs.organisational-group Duke Cancer Institute
pubs.organisational-group Duke Clinical Research Institute
pubs.organisational-group Biostatistics & Bioinformatics
pubs.organisational-group Population Health Sciences
pubs.organisational-group Duke Science & Society
pubs.organisational-group Psychiatry & Behavioral Sciences, Translational Neuroscience
pubs.organisational-group Trinity College of Arts & Sciences
pubs.organisational-group Institutes and Centers
pubs.organisational-group Basic Science Departments
pubs.organisational-group Initiatives
pubs.organisational-group Institutes and Provost's Academic Units
pubs.organisational-group Psychiatry & Behavioral Sciences
pubs.organisational-group Clinical Science Departments
pubs.organisational-group Staff
pubs.organisational-group Social Science Research Institute
pubs.organisational-group University Institutes and Centers
pubs.publication-status Published
pubs.volume 7
duke.contributor.orcid Check, Devon K|0000-0003-0872-5527


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