scholarly journals Flexible and Dynamic Consent-Capturing

2012 ◽  
pp. 119-131 ◽  
Author(s):  
Muhammad Rizwan Asghar ◽  
Giovanni Russello
Keyword(s):  
Dynamic Consent

scholarly journals ‘CTRL’: an online, Dynamic Consent and participant engagement platform working towards solving the complexities of consent in genomic research

2021 ◽  
Author(s):  
Matilda A. Haas ◽  
Harriet Teare ◽  
Megan Prictor ◽  
Gabi Ceregra ◽  
Miranda E. Vidgen ◽  
...  
Keyword(s):  
Large Scale ◽  
Genomic Medicine ◽  
International Standards ◽  
Security And Privacy ◽  
Genomic Research ◽  
Return Of Results ◽  
Future Research ◽  
Design And Development ◽  
Participant Engagement ◽  
Dynamic Consent

AbstractThe complexities of the informed consent process for participating in research in genomic medicine are well-documented. Inspired by the potential for Dynamic Consent to increase participant choice and autonomy in decision-making, as well as the opportunities for ongoing participant engagement it affords, we wanted to trial Dynamic Consent and to do so developed our own web-based application (web app) called CTRL (control). This paper documents the design and development of CTRL, for use in the Australian Genomics study: a health services research project building evidence to inform the integration of genomic medicine into mainstream healthcare. Australian Genomics brought together a multi-disciplinary team to develop CTRL. The design and development process considered user experience; security and privacy; the application of international standards in data sharing; IT, operational and ethical issues. The CTRL tool is now being offered to participants in the study, who can use CTRL to keep personal and contact details up to date; make consent choices (including indicate preferences for return of results and future research use of biological samples, genomic and health data); follow their progress through the study; complete surveys, contact the researchers and access study news and information. While there are remaining challenges to implementing Dynamic Consent in genomic research, this study demonstrates the feasibility of building such a tool, and its ongoing use will provide evidence about the value of Dynamic Consent in large-scale genomic research programs.

scholarly journals DynamiChain: Development of Medical Blockchain Ecosystem Based on Dynamic Consent System

2021 ◽  
Vol 11 (4) ◽  
pp. 1612
Author(s):  
Tong Min Kim ◽  
Seo-Joon Lee ◽  
Dong-Jin Chang ◽  
Jawook Koo ◽  
Taenam Kim ◽  
...  
Keyword(s):  
Industrial Revolution ◽  
Health Management ◽  
Personal Health Information ◽  
Healthcare Sector ◽  
Personal Health ◽  
Health Examination ◽  
Fourth Industrial Revolution ◽  
Management Algorithm ◽  
Dynamic Consent ◽  
Privacy Issues

Although blockchain is acknowledged as one of the most important technologies to lead the fourth industrial revolution, major technical challenges regarding security breach and privacy issues remain. This issue is particularly sensitive in applied medical fields where personal health information is handled within the network. In addition, contemporary blockchain-converged solutions do not consider restricted medical data regulations that are still obstacles in many countries worldwide. This implies a crucial need for a system or solution that is suitable for the healthcare sector. Therefore, this article proposes the development of a dynamic consent medical blockchain system called DynamiChain, based on a ruleset management algorithm for handling health examination data. Moreover, medical blockchain-related studies were systematically reviewed to prove the novelty of DynamiChain. The proposed system was implemented in a scenario where the exercise management healthcare company provided health management services based on data obtained from the data provider’s hospital. The proposed research is envisioned to provide a widely compatible blockchain medical system that could be applied in future healthcare fields.

Dynamic Consent in Neuroscience Too?

2021 ◽  
Vol 12 (1) ◽  
pp. 70-72
Author(s):  
Henri-Corto Stoeklé ◽  
Achille Ivasilevitch ◽  
Christian Hervé
Keyword(s):  
Dynamic Consent

scholarly journals Ethics: Dynamic consent in the digital age of biology: online initiatives and regulatory considerations

2013 ◽  
Vol 5 (4) ◽  
pp. 341 ◽  
Author(s):  
Richman Wee ◽  
Mark Henaghan ◽  
Ingrid Winship
Keyword(s):  
Digital Age ◽  
Dynamic Consent

scholarly journals Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?

2013 ◽  
Vol 21 (9) ◽  
pp. 897-902 ◽  
Author(s):  
Kristin Solum Steinsbekk ◽  
Bjørn Kåre Myskja ◽  
Berge Solberg
Keyword(s):  
Ethical Problem ◽  
Broad Consent ◽  
Biobank Research ◽  
Dynamic Consent

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

2020 ◽  
Author(s):  
Harriet J. A. Teare ◽  
Megan Prictor ◽  
Jane Kaye
Keyword(s):  
Digital Divide ◽  
Biomedical Research ◽  
Digital Health ◽  
Future Research ◽  
New Approach ◽  
Dynamic Consent ◽  
Integral Role ◽  
Use Of Social Media ◽  
And Control

AbstractDynamic 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.

scholarly journals Can dynamic consent facilitate the protection of biomedical big data in biobanking in Malaysia?

2019 ◽  
Vol 11 (2) ◽  
pp. 209-222
Author(s):  
Mohammad Firdaus Abdul Aziz ◽  
Aimi Nadia Mohd Yusof
Keyword(s):  
Big Data ◽  
Dynamic Consent

scholarly journals Authority and the Future of Consent in Population-Level Biomedical Research

2019 ◽  
Author(s):  
Mark Sheehan ◽  
Rachel Thompson ◽  
Jon Fistein ◽  
Jim Davies ◽  
Michael Dunn ◽  
...  
Keyword(s):  
Biomedical Research ◽  
Large Scale ◽  
Population Level ◽  
Research Governance ◽  
Choice Making ◽  
Research Activities ◽  
Dynamic Consent ◽  
Governance Process ◽  
Technical Solutions ◽  
Meta Consent

Abstract Population-level biomedical research has become crucial to the health system’s ability to improve the health of the population. This form of research raises a number of well-documented ethical concerns, perhaps the most significant of which is the inability of the researcher to obtain fully informed specific consent from participants. Two proposed technical solutions to this problem of consent in large-scale biomedical research that have become increasingly popular are meta-consent and dynamic consent. We critically examine the ethical and practical credentials of these proposals and find them lacking. We suggest that the consent problem is not solved by adopting a technology driven approach grounded in a notion of ‘specific’ consent but by taking seriously the role of research governance in combination with broader conceptions of consent. In our view, these approaches misconstrue the rightful location of authority in the way in which population-level biomedical research activities are structured and organized. We conclude by showing how and why the authority for determining the nature and shape of choice making about participation ought not to lie with individual participants, but rather with the researchers and the research governance process, and that this necessarily leads to the endorsement of a fully articulated broad consent approach.

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