ArticlePublic health genomics2015
Testing an online, dynamic consent portal for large population biobank research.
Article in Public health genomics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers.
What it found
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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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
32 citing papers in PubMed.
- A/B design testing of a clinical trial recruitment website: A pilot study to enhance the enrollment of older adults.Contemporary clinical trials · 2021Trial
- Interactive multimedia consent for biobanking: a randomized trial.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Trial
- Lessons Learned in Clinical Trial Recruitment: A Partnership Between a Genomic Research Study and the Discover Together Biobank.Biopreservation and biobanking · 2026Review
- When genomics companies act as biobanks: governance challenges in an era of genomic assetization.Frontiers in genetics · 2026Article
- 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
- Dynamic governance: A new era for consent for stem cell research.Stem cell reports · 2024Review
- Identifying facilitators of and barriers to the adoption of dynamic consent in digital health ecosystems: a scoping review.BMC medical ethics · 2023Article
- Enhancing Data Protection in Dynamic Consent Management Systems: Formalizing Privacy and Security Definitions with Differential Privacy, Decentralization, and Zero-Knowledge Proofs.Sensors (Basel, Switzerland) · 2023Article
- A GDPR-Compliant Dynamic Consent Mobile Application for the Australasian Type-1 Diabetes Data Network.Healthcare (Basel, Switzerland) · 2023Article
- Electronic informed consent criteria for research ethics review: a scoping review.BMC medical ethics · 2022Article
- Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions.Frontiers in public health · 2022Article
- Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions.Journal of personalized medicine · 2021Article
- Reflections on dynamic consent in biomedical research: the story so far.European journal of human genetics : EJHG · 2021Article
- Facing new challenges to informed consent processes in the context of translational research: the case in CARPEM consortium.BMC medical ethics · 2021Review
- Adding dynamic consent to a longitudinal cohort study: A qualitative study of EXCEED participant perspectives.BMC medical ethics · 2021Review
- Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues.Frontiers in medicine · 2021Review
- Demonstrating 'respect for persons' in clinical research: findings from qualitative interviews with diverse genomics research participants.Journal of medical ethics · 2020Article
- Dwarna: a blockchain solution for dynamic consent in biobanking.European journal of human genetics : EJHG · 2020Article
- Replacing Paper Informed Consent with Electronic Informed Consent for Research in Academic Medical Centers: A Scoping Review.AMIA Joint Summits on Translational Science proceedings. AMIA Joint Summits on Translational Science · 2020Article
- "I'm a Little More Trusting": Components of Trustworthiness in the Decision to Participate in Genomics Research for African Americans.Public health genomics · 2019Article
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
backgroundMichigan's BioTrust for Health, a public health research biobank comprised of residual dried bloodspot (DBS) cards from newborn screening contains over 4 million samples collected without written consent. Participant-centric initiatives are IT tools that hold great promise to address the consent challenges in biobank research.
methodsWorking with Private Access Inc., a pioneer in patient-centric web solutions, we created and pilot tested a dynamic informed consent simulation, paired with an educational website, focusing on consent for research utilizing DBSs in Michigan's BioTrust for Health.
resultsOut of 187 pilot testers recruited in 2 groups, 137 completed the consent simulation and exit survey. Over 50% indicated their willingness to set up an account if the simulation went live and to recommend it to others. Participants raised concerns about the process of identity verification and appeared to have little experience with sharing health information online.
conclusionsApplying online, dynamic approaches to address the consent challenges raised by biobanks with legacy sample collections should be explored, given the positive reaction to our pilot test and the strong preference for active consent. Balancing security and privacy with accessibility and ease of use will continue to be a challenge.
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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.