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

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          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          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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          From patients to partners: participant-centric initiatives in biomedical research.

          Jane Kaye, Liam Curren, Nick Anderson … (2012)
          Advances in computing technology and bioinformatics mean that medical research is increasingly characterized by large international consortia of researchers that are reliant on large data sets and biobanks. These trends raise a number of challenges for obtaining consent, protecting participant privacy concerns and maintaining public trust. Participant-centred initiatives (PCIs) use social media technologies to address these immediate concerns, but they also provide the basis for long-term interactive partnerships. Here, we give an overview of this rapidly moving field by providing an analysis of the different PCI approaches, as well as the benefits and challenges of implementing PCIs.
          Article 0 comments Cited 104 times – based on 0 reviews     Review now
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            Broad Consent for Research With Biological Samples: Workshop Conclusions.

            Christine Grady, Lisa Eckstein, Ben Berkman … (2015)
            Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health (NIH) Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and timely topic.
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              Dynamic Consent: a potential solution to some of the challenges of modern biomedical research

              Isabelle Budin-Ljøsne, Harriet J. A. Teare, Jane Kaye … (2017)
              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.
              Article 0 comments Cited 71 times – based on 0 reviews     Review now
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                Author and article information

                Contributors
                Harriet J. A. Teare:
                ORCID: http://orcid.org/0000-0002-3783-7547
                harriet.teare@law.ox.ac.uk
                Journal
                Journal ID (nlm-ta): Eur J Hum Genet
                Journal ID (iso-abbrev): Eur J Hum Genet
                Title: European Journal of Human Genetics
                Publisher: Springer International Publishing (Cham )
                ISSN (Print): 1018-4813
                ISSN (Electronic): 1476-5438
                Publication date (Electronic): 28 November 2020
                Publication date PMC-release: 28 November 2020
                Pages: 1-8
                Affiliations
                [1 ]GRID grid.4991.5, ISNI 0000 0004 1936 8948, Centre for Health, Law and Emerging Technologies, Faculty of Law, , University of Oxford, ; Oxford, UK
                [2 ]GRID grid.1008.9, ISNI 0000 0001 2179 088X, Health, Law and Emerging Technologies, Melbourne Law School, , University of Melbourne, ; Carlton, VIC Australia
                Author information
                http://orcid.org/0000-0002-3783-7547
                http://orcid.org/0000-0002-5244-2041
                http://orcid.org/0000-0002-7311-4725
                Article
                Publisher ID: 771
                DOI: 10.1038/s41431-020-00771-z
                PMC ID: 7695991
                PubMed ID: 33249421
                SO-VID: 78375f5d-9a8c-4b4e-916b-babeeac03fbb
                Copyright © © The Author(s) 2020
                License:

                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/.

                History
                Date received : 16 July 2020
                Date revision received : 30 September 2020
                Date accepted : 22 October 2020
                Categories
                Subject: Article

                ScienceOpen disciplines: Genetics
                Keywords: ethics,medical ethics
                Data availability:
                ScienceOpen disciplines: Genetics
                Keywords: ethics, medical ethics

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