European Journal of Human Genetics · 2020 · 99 citations · 35 references
Health ProfessionsBiomedical SciencesHealth InformaticsElectronic Health RecordsHealth Information GovernanceMedical EthicsConsentDigital Health GovernanceDigital Health Research EthicsHealth Information EthicsParticipant ConfidentialityPatient PrivacyBiobanking ConsentBiomedical Research EthicsConsent In Clinical ResearchConsent In HealthcareDynamic ConsentHealthcare Patient EngagementInformed ConsentPatient Consent
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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Broad Consent for Research With Biological Samples: Workshop Conclusions
Christine Grady, Lisa Eckstein, Ben Berkman et al. · The American Journal of Bioethics · 2015 · 338 citations · Full text
Law, Health Law, Bioethics +16
Karen Spencer, Caroline Sanders, Edgar A. Whitley et al. · Journal of Medical Internet Research · 2016 · 200 citations · Full text
Computing, Health Informatics, Electronic Health Records +15