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

Dynamic consent (DC) was originally developed in response to challenges to the informed consent process presented by participants agreeing to ‘future research’ in biobanking. In the past 12 years, it has been trialled in a number of different projects, and examined as a new approach for consent and...

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Detalles Bibliográficos
Autores principales: Teare, Harriet J. A., Prictor, Megan, Kaye, Jane
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7695991/
https://www.ncbi.nlm.nih.gov/pubmed/33249421
http://dx.doi.org/10.1038/s41431-020-00771-z
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author Teare, Harriet J. A.
Prictor, Megan
Kaye, Jane
author_facet Teare, Harriet J. A.
Prictor, Megan
Kaye, Jane
author_sort Teare, Harriet J. A.
collection PubMed
description Dynamic consent (DC) was originally developed in response to challenges to the informed consent process presented by participants agreeing to ‘future research’ in biobanking. In the past 12 years, it has been trialled in a number of different projects, and examined as a new approach for consent and to support patient engagement over time. There have been significant societal shifts during this time, namely in our reliance on digital tools and the use of social media, as well as a greater appreciation of the integral role of patients in biomedical research. This paper reflects on the development of DC to understand its importance in an age where digital health is becoming the norm and patients require greater oversight and control of how their data may be used in a range of settings. As well as looking back, it looks forwards to consider how DC could be further utilised to enhance the patient experience and address some of the inequalities caused by the digital divide in society.
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spelling pubmed-76959912020-12-01 Reflections on dynamic consent in biomedical research: the story so far Teare, Harriet J. A. Prictor, Megan Kaye, Jane Eur J Hum Genet Article Dynamic consent (DC) was originally developed in response to challenges to the informed consent process presented by participants agreeing to ‘future research’ in biobanking. In the past 12 years, it has been trialled in a number of different projects, and examined as a new approach for consent and to support patient engagement over time. There have been significant societal shifts during this time, namely in our reliance on digital tools and the use of social media, as well as a greater appreciation of the integral role of patients in biomedical research. This paper reflects on the development of DC to understand its importance in an age where digital health is becoming the norm and patients require greater oversight and control of how their data may be used in a range of settings. As well as looking back, it looks forwards to consider how DC could be further utilised to enhance the patient experience and address some of the inequalities caused by the digital divide in society. Springer International Publishing 2020-11-28 2021-04 /pmc/articles/PMC7695991/ /pubmed/33249421 http://dx.doi.org/10.1038/s41431-020-00771-z Text en © The Author(s) 2020 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) .
spellingShingle Article
Teare, Harriet J. A.
Prictor, Megan
Kaye, Jane
Reflections on dynamic consent in biomedical research: the story so far
title Reflections on dynamic consent in biomedical research: the story so far
title_full Reflections on dynamic consent in biomedical research: the story so far
title_fullStr Reflections on dynamic consent in biomedical research: the story so far
title_full_unstemmed Reflections on dynamic consent in biomedical research: the story so far
title_short Reflections on dynamic consent in biomedical research: the story so far
title_sort reflections on dynamic consent in biomedical research: the story so far
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7695991/
https://www.ncbi.nlm.nih.gov/pubmed/33249421
http://dx.doi.org/10.1038/s41431-020-00771-z
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