Cargando…

Dynamic Consent: a potential solution to some of the challenges of modern biomedical research

BACKGROUND: Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirem...

Descripción completa

Detalles Bibliográficos
Autores principales: Budin-Ljøsne, Isabelle, Teare, Harriet J. A., Kaye, Jane, Beck, Stephan, Bentzen, Heidi Beate, Caenazzo, Luciana, Collett, Clive, D’Abramo, Flavio, Felzmann, Heike, Finlay, Teresa, Javaid, Muhammad Kassim, Jones, Erica, Katić, Višnja, Simpson, Amy, Mascalzoni, Deborah
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5264333/
https://www.ncbi.nlm.nih.gov/pubmed/28122615
http://dx.doi.org/10.1186/s12910-016-0162-9
_version_ 1782500085199798272
author Budin-Ljøsne, Isabelle
Teare, Harriet J. A.
Kaye, Jane
Beck, Stephan
Bentzen, Heidi Beate
Caenazzo, Luciana
Collett, Clive
D’Abramo, Flavio
Felzmann, Heike
Finlay, Teresa
Javaid, Muhammad Kassim
Jones, Erica
Katić, Višnja
Simpson, Amy
Mascalzoni, Deborah
author_facet Budin-Ljøsne, Isabelle
Teare, Harriet J. A.
Kaye, Jane
Beck, Stephan
Bentzen, Heidi Beate
Caenazzo, Luciana
Collett, Clive
D’Abramo, Flavio
Felzmann, Heike
Finlay, Teresa
Javaid, Muhammad Kassim
Jones, Erica
Katić, Višnja
Simpson, Amy
Mascalzoni, Deborah
author_sort Budin-Ljøsne, Isabelle
collection PubMed
description BACKGROUND: Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment. METHODS: An interdisciplinary workshop jointly organised by the University of Oxford and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach. RESULTS: Dynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies. CONCLUSIONS: Dynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures.
format Online
Article
Text
id pubmed-5264333
institution National Center for Biotechnology Information
language English
publishDate 2017
publisher BioMed Central
record_format MEDLINE/PubMed
spelling pubmed-52643332017-01-30 Dynamic Consent: a potential solution to some of the challenges of modern biomedical research Budin-Ljøsne, Isabelle Teare, Harriet J. A. Kaye, Jane Beck, Stephan Bentzen, Heidi Beate Caenazzo, Luciana Collett, Clive D’Abramo, Flavio Felzmann, Heike Finlay, Teresa Javaid, Muhammad Kassim Jones, Erica Katić, Višnja Simpson, Amy Mascalzoni, Deborah BMC Med Ethics Research Article BACKGROUND: Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment. METHODS: An interdisciplinary workshop jointly organised by the University of Oxford and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach. RESULTS: Dynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies. CONCLUSIONS: Dynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures. BioMed Central 2017-01-25 /pmc/articles/PMC5264333/ /pubmed/28122615 http://dx.doi.org/10.1186/s12910-016-0162-9 Text en © The Author(s). 2017 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided 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 Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research Article
Budin-Ljøsne, Isabelle
Teare, Harriet J. A.
Kaye, Jane
Beck, Stephan
Bentzen, Heidi Beate
Caenazzo, Luciana
Collett, Clive
D’Abramo, Flavio
Felzmann, Heike
Finlay, Teresa
Javaid, Muhammad Kassim
Jones, Erica
Katić, Višnja
Simpson, Amy
Mascalzoni, Deborah
Dynamic Consent: a potential solution to some of the challenges of modern biomedical research
title Dynamic Consent: a potential solution to some of the challenges of modern biomedical research
title_full Dynamic Consent: a potential solution to some of the challenges of modern biomedical research
title_fullStr Dynamic Consent: a potential solution to some of the challenges of modern biomedical research
title_full_unstemmed Dynamic Consent: a potential solution to some of the challenges of modern biomedical research
title_short Dynamic Consent: a potential solution to some of the challenges of modern biomedical research
title_sort dynamic consent: a potential solution to some of the challenges of modern biomedical research
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5264333/
https://www.ncbi.nlm.nih.gov/pubmed/28122615
http://dx.doi.org/10.1186/s12910-016-0162-9
work_keys_str_mv AT budinljøsneisabelle dynamicconsentapotentialsolutiontosomeofthechallengesofmodernbiomedicalresearch
AT teareharrietja dynamicconsentapotentialsolutiontosomeofthechallengesofmodernbiomedicalresearch
AT kayejane dynamicconsentapotentialsolutiontosomeofthechallengesofmodernbiomedicalresearch
AT beckstephan dynamicconsentapotentialsolutiontosomeofthechallengesofmodernbiomedicalresearch
AT bentzenheidibeate dynamicconsentapotentialsolutiontosomeofthechallengesofmodernbiomedicalresearch
AT caenazzoluciana dynamicconsentapotentialsolutiontosomeofthechallengesofmodernbiomedicalresearch
AT collettclive dynamicconsentapotentialsolutiontosomeofthechallengesofmodernbiomedicalresearch
AT dabramoflavio dynamicconsentapotentialsolutiontosomeofthechallengesofmodernbiomedicalresearch
AT felzmannheike dynamicconsentapotentialsolutiontosomeofthechallengesofmodernbiomedicalresearch
AT finlayteresa dynamicconsentapotentialsolutiontosomeofthechallengesofmodernbiomedicalresearch
AT javaidmuhammadkassim dynamicconsentapotentialsolutiontosomeofthechallengesofmodernbiomedicalresearch
AT joneserica dynamicconsentapotentialsolutiontosomeofthechallengesofmodernbiomedicalresearch
AT katicvisnja dynamicconsentapotentialsolutiontosomeofthechallengesofmodernbiomedicalresearch
AT simpsonamy dynamicconsentapotentialsolutiontosomeofthechallengesofmodernbiomedicalresearch
AT mascalzonideborah dynamicconsentapotentialsolutiontosomeofthechallengesofmodernbiomedicalresearch