ReviewComputational and structural biotechnology journal2020
Dynamic-informed consent: A potential solution for ethical dilemmas in population sequencing initiatives.
Review in Computational and structural biotechnology journal, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06656247 (Biobanks, Registries and National Health Records), which is not on this map. Cited by 27 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Biobanks, Registries and National Health Records: Modelling a Networking Strategy to Foster Research and Development and to Support the Secondary Use of Data and Samples of Rare Disease Patients: Implementing Dynamic Consent for Rare Disease Patients
Who cites it
27 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Blockchain-Based Dynamic and Revocable Consent for Secondary Health Data Use: Systematic Review.JMIR medical informatics · 2026Pooled it
- Dynamic consent: a royal road to research consent?Journal of medical ethics · 2026Article
- Artificial intelligence and pediatric imaging data: ethical strategies for learning and collaboration.Pediatric radiology · 2026Review
- Rethinking scale in AI-driven genomic medicine - The role of small biobanks.Frontiers in genetics · 2026Article
- Critical consideration towards broad consent by patient experts: results of a semi-structured interview study on the secondary use of medical data.BMC medical ethics · 2025Article
- Strengthening ethical oversight in genomics and biobanking: a retrospective analysis of research practices in Zimbabwe.BMC medical ethics · 2025Article
- Informed Consent for Newborn Genomic Screening: Interest-Holder Perspectives on Dynamic Consent in an Evolving Landscape.International journal of neonatal screening · 2025Article
- On the ethical governance of swarm robotic systems in the real world.Philosophical transactions. Series A, Mathematical, physical, and engineering sciences · 2025Article
- A decade of research on genetic privacy: the findings of the GetPreCiSe Center at Vanderbilt University.Frontiers in genetics · 2025Review
- Incidental genomic findings in large scale research: using the "3-I framework" to reveal policy considerations.Frontiers in genetics · 2025Article
- Integrating population-based biobanks: Catalyst for advances in precision health.Computational and structural biotechnology journal · 2024Article
- 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
- [Nationally standardized broad consent in practice: initial experiences, current developments, and critical assessment].Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2024Article
- Data altruism and the "consent" question: a study into the "consent" models used under the GDPR and how the data altruism mechanism can act as a potential solution for the research community in the reuse of health data.Frontiers in medicine · 2024Review
- Introducing dynamic consent for improved trust and privacy in research involving human biological material and associated data in South Africa.Frontiers in genetics · 2024Article
- Workplace genetic testing: which employees are likely to participate, what are their concerns with employer sponsorship, and which design features could reduce barriers and increase participation?Frontiers in genetics · 2024Article
- Testing and Practical Implementation of a User-Friendly Personalized and Long-Term Electronic Informed Consent Prototype in Clinical Research: Mixed Methods Study.Journal of medical Internet research · 2023Article
- Patient priorities for fulfilling the principle of respect in research: findings from a modified Delphi study.BMC medical ethics · 2023Article
- Attitudes Toward Providing Open Access for Use of Biospecimens and Health Records: A Cross-Sectional Study from Jordan.Patient preference and adherence · 2023Article
- Attitudes of Patients With Chronic Heart Failure Toward Digital Device Data for Self-documentation and Research in Germany: Cross-sectional Survey Study.JMIR cardio · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
While the majority of population-level genome sequencing initiatives claim to follow the principles of informed consent, the requirements for informed consent have not been-well defined in this context. In fact, the implementation of informed consent differs greatly across these initiatives - spanning broad consent, blanket consent, and tiered consent among others. As such, this calls for an investigation into the requirements for consent to be "informed" in the context of population genomics. One particular strategy that claims to be fully informed and to continuously engage participants is called "dynamic consent". Dynamic consent is based on a personalised communication platform that aims to facilitate the consent process. It is oriented to support continuous two-way communication between researchers and participants. In this paper, we analyze the requirements of informed consent in the context of population genomics, review various current implementations of dynamic consent, assess whether they fulfill the requirement of informed consent, and, in turn, enable participants to make autonomous and informed choices on whether or not to participate in research projects.
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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.