Literature DB >> 31729900

Dynamic Consent: An Evaluation and Reporting Framework.

Megan Prictor1, Megan A Lewis2, Ainsley J Newson3, Matilda Haas4,5, Sachiko Baba6, Hannah Kim7, Minori Kokado6, Jusaku Minari8, Fruzsina Molnár-Gábor9, Beverley Yamamoto6, Jane Kaye1,10, Harriet J A Teare1,10.   

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.

Entities:  

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

Year:  2019        PMID: 31729900     DOI: 10.1177/1556264619887073

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  11 in total

1.  Who Will Get Paid for Artificial Intelligence in Medicine?

Authors:  Colin Rowell; Ronnie Sebro
Journal:  Radiol Artif Intell       Date:  2022-08-03

Review 2.  Digitizing the Informed Consent Process: A Review of the Regulatory Landscape in the European Union.

Authors:  Evelien De Sutter; Janos Meszaros; Pascal Borry; Isabelle Huys
Journal:  Front Med (Lausanne)       Date:  2022-05-25

3.  METORY: Development of a Demand-Driven Blockchain-Based Dynamic Consent Platform Tailored for Clinical Trials.

Authors:  Ki Young Huh; Sang-Un Jeong; Seol Ju Moon; Min-Ji Kim; Wooseok Yang; Myeonggyu Jeong; Ildae Song; Yong-Geun Kwak; SeungHwan Lee; Min-Gul Kim
Journal:  Front Med (Lausanne)       Date:  2022-05-13

Review 4.  Views on genomic research result delivery methods and informed consent: a review.

Authors:  Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Madeleine J Murtagh
Journal:  Per Med       Date:  2021-04-06       Impact factor: 2.512

5.  A Smart Contract-Based Dynamic Consent Management System for Personal Data Usage under GDPR.

Authors:  Mpyana Mwamba Merlec; Youn Kyu Lee; Seng-Phil Hong; Hoh Peter In
Journal:  Sensors (Basel)       Date:  2021-11-30       Impact factor: 3.576

6.  Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process.

Authors:  Deborah Mascalzoni; Roberto Melotti; Cristian Pattaro; Peter Paul Pramstaller; Martin Gögele; Alessandro De Grandi; Roberta Biasiotto
Journal:  Eur J Hum Genet       Date:  2022-09-05       Impact factor: 5.351

7.  Social differentiation of the perception and human tissues donation for research purposes.

Authors:  Anita Majchrowska; Michał Wiechetek; Jan Domaradzki; Jakub Pawlikowski
Journal:  Front Genet       Date:  2022-09-15       Impact factor: 4.772

8.  Associations between the Willingness to Donate Samples to Biobanks and Selected Psychological Variables.

Authors:  Jakub Pawlikowski; Michał Wiechetek; Anita Majchrowska
Journal:  Int J Environ Res Public Health       Date:  2022-02-23       Impact factor: 3.390

9.  Reflections on dynamic consent in biomedical research: the story so far.

Authors:  Harriet J A Teare; Megan Prictor; Jane Kaye
Journal:  Eur J Hum Genet       Date:  2020-11-28       Impact factor: 4.246

Review 10.  Electronic consenting for conducting research remotely: A review of current practice and key recommendations for using e-consenting.

Authors:  Emily Skelton; Nicholas Drey; Mary Rutherford; Susan Ayers; Christina Malamateniou
Journal:  Int J Med Inform       Date:  2020-09-13       Impact factor: 4.046

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