Electronic consenting for conducting research remotely: A review of current practice and key recommendations for using e-consenting

E Skelton, N Drey, M Rutherford, S Ayers… - International journal of …, 2020 - Elsevier
Background Electronic approaches are becoming more widely used to obtain informed
consent for research participation. Electronic consent (e-consent) provides an accessible …

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

HJA Teare, M Prictor, J Kaye - European journal of human genetics, 2021 - nature.com
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 …

[HTML][HTML] Digitizing the informed consent process: a review of the regulatory landscape in the European Union

E De Sutter, J Meszaros, P Borry, I Huys - Frontiers in Medicine, 2022 - frontiersin.org
Background: Rapid technological advancements are reshaping the conduct of clinical
research. Electronic informed consent (eIC) is one of these novel advancements, allowing to …

Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process

D Mascalzoni, R Melotti, C Pattaro… - European Journal of …, 2022 - nature.com
Abstract The Cooperative Health Research in South Tyrol (CHRIS) is a longitudinal study in
Northern Italy, using dynamic consent since its inception in 2011. The CHRIS study collects …

[HTML][HTML] Ethical issues in patient data ownership

V Chiruvella, AK Guddati - Interactive journal of medical research, 2021 - i-jmr.org
Patient data have conventionally been thought to be well protected by the privacy laws
outlined in the United States. The increasing interest of for-profit companies in acquiring the …

A smart contract-based dynamic consent management system for personal data usage under GDPR

MM Merlec, YK Lee, SP Hong, HP In - Sensors, 2021 - mdpi.com
A massive amount of sensitive personal data is being collected and used by scientists,
businesses, and governments. This has led to unprecedented threats to privacy rights and …

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

MA Haas, H Teare, M Prictor, G Ceregra… - European Journal of …, 2021 - nature.com
The 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 …

Privacy concerns of the Australian My Health Record: Implications for other large-scale opt-out personal health records

PCI Pang, D McKay, S Chang, Q Chen, X Zhang… - Information Processing …, 2020 - Elsevier
Personal health records offer the convenience of accessing medical history and personal
health information, but also raise a range of privacy concerns which affect their adoption. In …

Evaluation of CTRL: a web application for dynamic consent and engagement with individuals involved in a cardiovascular genetic disorders cohort

MA Haas, EO Madelli, R Brown, M Prictor… - European Journal of …, 2024 - nature.com
There has been keen interest in whether dynamic consent should be used in health
research but few real-world studies have evaluated its use. Australian Genomics piloted and …

Social differentiation of the perception and human tissues donation for research purposes

A Majchrowska, M Wiechetek, J Domaradzki… - Frontiers in …, 2022 - frontiersin.org
The willingness to donate human biological material for research purposes is shaped by
socio-cultural factors; however, there is a lack of studies analysing the social perception of …