Article ; Online: Reflections on dynamic consent in biomedical research: the story so far.
European journal of human genetics : EJHG
2020 Volume 29, Issue 4, Page(s) 649–656
Abstract: ... role of patients in biomedical research. This paper reflects on the development of DC to understand ... 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 ...
| 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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| MeSH term(s) | Biological Specimen Banks/statistics & numerical data ; Genetic Privacy/psychology ; Genetic Privacy/trends ; Humans ; Informed Consent/psychology ; Informed Consent/statistics & numerical data ; Tissue Donors/psychology ; Tissue Donors/statistics & numerical data ; Tissue and Organ Procurement/statistics & numerical data | |||||
| Language | English | |||||
| Publishing date | 2020-11-28 | |||||
| Publishing country | England | |||||
| Document type | Journal Article | |||||
| ZDB-ID | 1141470-4 | |||||
| ISSN | 1476-5438 ; 1018-4813 | |||||
| ISSN (online) | 1476-5438 | |||||
| ISSN | 1018-4813 | |||||
| DOI | 10.1038/s41431-020-00771-z | |||||
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| Database | MEDical Literature Analysis and Retrieval System OnLINE |
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