Journal
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS
Volume 15, Issue 3, Pages 175-186Publisher
SAGE PUBLICATIONS INC
DOI: 10.1177/1556264619887073
Keywords
dynamic consent; informed consent; evaluation; reporting; trials; digital; genomics; biobanking; research participation
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Funding
- Daiwa Anglo-Japanese Foundation
- Japanese Agency for Medical Research and Development [AMED], Japan
- DAIWA Anglo-Japanese Foundation [11037/12349]
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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.
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