Dynamic Consent: An Evaluation and Reporting Framework
Journal of Empirical Research on Human Research Ethics, Vol 15, No. 3 (2020)
30 Pages Posted: 1 Jun 2020
Date Written: June 1, 2020
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 paper outlines a framework for DC evaluation and reporting. The paper 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 maximise their quality, replicability and relevance based on this framework. Finally, the paper considers best-practice for reporting studies that assess DC, to enable future research and implementation to build upon the emerging evidence base.
Keywords: dynamic consent, informed consent
JEL Classification: K30
Suggested Citation: Suggested Citation