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J Empir Res Hum Res Ethics. 2019 Nov 15:1556264619887073. doi: 10.1177/1556264619887073. [Epub ahead of print]

Dynamic Consent: An Evaluation and Reporting Framework.

Author information

1
Melbourne Law School, The University of Melbourne, Carlton, Victoria, Australia.
2
RTI International, Seattle, Washington, USA.
3
Sydney Health Ethics, Faculty of Medicine and Health, School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
4
Australian Genomics Health Alliance, Parkville, Victoria, Australia.
5
Murdoch Children's Research Institute, Parkville, Victoria, Australia.
6
Osaka University, Suita, Japan.
7
Yonsei University, Seoul, Republic of Korea.
8
Uehiro Research Division for iPS Cell Ethics, CiRA, Kyoto University, Japan.
9
Heidelberg Academy of Sciences and Humanities, Germany.
10
University of Oxford, Oxford, United Kingdom.

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.

KEYWORDS:

biobanking; digital; dynamic consent; evaluation; genomics; informed consent; reporting; research participation; trials

PMID:
31729900
DOI:
10.1177/1556264619887073

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