Dynamic Consent: An Evaluation and Reporting Framework

Journal of Empirical Research on Human Research Ethics, Vol 15, No. 3 (2020)

U of Melbourne Legal Studies Research Paper No. 886

30 Pages Posted: 1 Jun 2020

See all articles by Megan Prictor

Megan Prictor

Melbourne Law School; Centre for Digital Transformation of Health

Megan A Lewis

RTI International

Ainsley Newson

The University of Sydney

Matilda Haas

Australian Genomics Health Alliance

Sachiko Baba

Osaka University

Hannah Kim

Yonsei University

Minori Kokado

affiliation not provided to SSRN

Jusaku Minari

Kyoto University

Fruzsina Molnar-Gabor

Heidelberg Academy of Sciences and Humanities

Beverley Yamamoto

Osaka University

Jane Kaye

University of Oxford - Centre for Health, Law and Emerging Technologies

Harriet Teare

University of Oxford

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

Prictor, Megan and Lewis, Megan A and Newson, Ainsley and Haas, Matilda and Baba, Sachiko and Kim, Hannah and Kokado, Minori and Minari, Jusaku and Molnar-Gabor, Fruzsina and Yamamoto, Beverley and Kaye, Jane and Teare, Harriet, Dynamic Consent: An Evaluation and Reporting Framework (June 1, 2020). Journal of Empirical Research on Human Research Ethics, Vol 15, No. 3 (2020), U of Melbourne Legal Studies Research Paper No. 886, Available at SSRN: https://ssrn.com/abstract=3615380

Megan Prictor (Contact Author)

Melbourne Law School ( email )

University Square
185 Pelham Street
Carlton, Victoria 3010
Australia

Centre for Digital Transformation of Health

Parkville, 3010
Australia

Megan A Lewis

RTI International ( email )

PO Box 12194
Washington, DC 20036-3209
United States

Ainsley Newson

The University of Sydney ( email )

University of Sydney
Sydney, NSW 2006
Australia

Matilda Haas

Australian Genomics Health Alliance ( email )

Sachiko Baba

Osaka University ( email )

1-1 Yamadaoka
Suita
Osaka, 565-0871
Japan

Hannah Kim

Yonsei University

Seoul
Korea, Republic of (South Korea)

Minori Kokado

affiliation not provided to SSRN

No Address Available

Jusaku Minari

Kyoto University ( email )

Yoshida-Honmachi
Sakyo-ku
Kyoto, 606-8501
Japan

Fruzsina Molnar-Gabor

Heidelberg Academy of Sciences and Humanities ( email )

Beverley Yamamoto

Osaka University ( email )

1-1 Yamadaoka
Suita
Osaka, 565-0871
Japan

Jane Kaye

University of Oxford - Centre for Health, Law and Emerging Technologies ( email )

University of Oxford
Oxford, OX2 7DD
United Kingdom

Harriet Teare

University of Oxford

Mansfield Road
Oxford, Oxfordshire OX1 4AU
United Kingdom

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