ArticleEuropean journal of human genetics : EJHG2021
'CTRL': an online, Dynamic Consent and participant engagement platform working towards solving the complexities of consent in genomic research.
Article in European journal of human genetics : EJHG, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 papers, 2 of them syntheses that pooled it.
What it found
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The trial behind it
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Who cites it
33 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Systematic review of preferences for additional findings from genomic testing.European journal of human genetics : EJHG · 2026Pooled it
- Opportunities for a national genomic data governance framework in Australia: a systematic review.BMC medical ethics · 2025Pooled it
- Individuals' preferences for future biological sample and genomic data sharing in the Australian Reproductive Genetic Carrier Screening Project.European journal of human genetics : EJHG · 2026Article
- Multimodal Wearable Biosensing Meets Multidomain AI: A Pathway to Decentralized Healthcare.Advanced science (Weinheim, Baden-Wurttemberg, Germany) · 2026Review
- Informed Consent for Newborn Genomic Screening: Interest-Holder Perspectives on Dynamic Consent in an Evolving Landscape.International journal of neonatal screening · 2025Article
- Enhancing diagnostic outcomes in kidney genetic disorders: the KidGen national kidney genomics study protocol.BMC nephrology · 2025Article
- Participant engagement and involvement in longitudinal cohort studies: qualitative insights from a selection of pregnancy and birth, twin, and family-based population cohort studies.BMC medical research methodology · 2024Article
- Integrating population-based biobanks: Catalyst for advances in precision health.Computational and structural biotechnology journal · 2024Article
- Review
- Insights From the Development of a Dynamic Consent Platform for the Australians Together Health Initiative (ATHENA) Program: Interview and Survey Study.JMIR formative research · 2024Article
- Data protection legislation in Africa and pathways for enhancing compliance in big data health research.Health research policy and systems · 2024Article
- Opportunities and challenges of a dynamic consent-based application: personalized options for personal health data sharing and utilization.BMC medical ethics · 2024Article
- Balancing the safeguarding of privacy and data sharing: perceptions of genomic professionals on patient genomic data ownership in Australia.European journal of human genetics : EJHG · 2024Article
- Comparing Attitudes Toward Different Consent Mediums: Semistructured Qualitative Study.JMIR human factors · 2024Article
- Participant characteristics and reasons for non-consent to health information linkage for research: experiences from the ATHENA COVID-19 study.BMC medical informatics and decision making · 2024Article
- Future-proofing genomic data and consent management: a comprehensive review of technology innovations.GigaScience · 2024Review
- A multitiered analysis platform for genome sequencing: Design and initial findings of the Australian Genomics Cardiovascular Disorders Flagship.Genetics in medicine open · 2024Article
- Evaluation of CTRL: a web application for dynamic consent and engagement with individuals involved in a cardiovascular genetic disorders cohort.European journal of human genetics : EJHG · 2024Article
- Risk mapping for better governance in biobanking: the case of biobank.cy.Frontiers in genetics · 2024Article
- Identifying facilitators of and barriers to the adoption of dynamic consent in digital health ecosystems: a scoping review.BMC medical ethics · 2023Article
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.