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Dynamic Consent: An Evaluation and Reporting Framework

Authors
 Megan Prictor  ;  Megan A Lewis  ;  Ainsley J Newson  ;  Matilda Haas  ;  Sachiko Baba  ;  Hannah Kim  ;  Minori Kokado  ;  Jusaku Minari  ;  Fruzsina Molnár-Gábor  ;  Beverley Yamamoto  ;  Jane Kaye  ;  Harriet J A Teare 
Citation
 Journal of Empirical Research on Human Research Ethics, Vol.15(3) : 175-186, 2020-07 
Journal Title
 Journal of Empirical Research on Human Research Ethics 
Issue Date
2020-07
MeSH
Biological Specimen Banks* ; Biomedical Research* ; Communication ; Humans ; Informed Consent* ; Research Personnel
Keywords
dynamic consent ; informed consent ; evaluation ; reporting ; trials ; digital ; genomics ; biobanking ; research participation
Abstract
Dynamic consent (DC) is an approach to consent that enables people, through an interactive digital interface, to make granular decisions about their ongoing participation. This approach has been explored within biomedical research, in fields such as biobanking and genomics, where ongoing contact is required with participants. It is posited that DC can enhance decisional autonomy and improve researcher-participant communication. Currently, there is a lack of evidence about the measurable effects of DC-based tools. This article outlines a framework for DC evaluation and reporting. The article draws upon the evidence for enhanced modes of informed consent for research as the basis for a logic model. It outlines how future evaluations of DC should be designed to maximize their quality, replicability, and relevance based on this framework. Finally, the article considers best-practice for reporting studies that assess DC, to enable future research and implementation to build upon the emerging evidence base.
Full Text
https://journals.sagepub.com/doi/10.1177/1556264619887073
DOI
10.1177/1556264619887073
Appears in Collections:
1. College of Medicine (의과대학) > Dept. of Medical Humanities and Social Sciences (인문사회의학교실) > 1. Journal Papers
Yonsei Authors
Kim, Han Nah(김한나)
URI
https://ir.ymlib.yonsei.ac.kr/handle/22282913/190046
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