ArticleThe American journal of bioethics : AJOB2019
Exploring Understanding of "Understanding": The Paradigm Case of Biobank Consent Comprehension.
Article in The American journal of bioethics : AJOB, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
35 citing papers in PubMed.
- Ethical navigation of biobanking establishment in Ukraine: learning from the experience of developing countries.Journal of medical ethics · 2026Article
- eConsent vs traditional consent among prospective biobank participants: a randomized study within a study trial.npj digital public health · 2026Article
- When genomics companies act as biobanks: governance challenges in an era of genomic assetization.Frontiers in genetics · 2026Article
- Adults with Intellectual Disability and Consent to Precision Medicine Research: Using Supported Decision-Making to Facilitate First-Person Consent.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2026Article
- Implementing electronic informed consent in rare disease genomics.Scientific reports · 2025Article
- eConsent vs. Traditional Consent Among Prospective Biobank Participants: A Randomized Trial.medRxiv : the preprint server for health sciences · 2025Article
- Informed Consent and Comprehension after the Pragmatic Turn.The American journal of bioethics : AJOB · 2025Article
- Towards better enrollment decision-making for perinatal clinical research: Reconsidering recruitment and consent processes to support family values and preferences.Seminars in perinatology · 2025Review
- Building trust in clinical research: a systems approach to ethical engagement and sustainable outcomes.Frontiers in pharmacology · 2025Article
- Exploring biorepository donation patterns, experiences, and recommendations: a mixed-methods study among Appalachian adults enrolled in a sugary drink reduction program.Frontiers in public health · 2024Article
- Machine learning-based donor permission extraction from informed consent documents.BMC bioinformatics · 2023Article
- How to Design Consent for Health Data Research? An Analysis of Arguments of Solidarity.Public health ethics · 2023Article
- Patient understanding of pharmacogenomic test results in clinical care.Patient education and counseling · 2023Article
- Research-Related Stakeholders' Perspectives on Sociocultural Considerations in Biobanking Practice in South Africa.Biopreservation and biobanking · 2023Article
- Australian Donation and Transplantation Biobank: A Research Biobank Integrated Within a Deceased Organ and Tissue Donation Program.Transplantation direct · 2023Article
- Creating personas for exposome research: the experience from the HEAP project.Open research Europe · 2023Article
- Identification and Re-consent of Existing Cord Blood Donors for Creation of Induced Pluripotent Stem Cell Lines for Potential Clinical Applications.Stem cells translational medicine · 2022Article
- Leveraging genomic diversity for discovery in an electronic health record linked biobank: the UCLA ATLAS Community Health Initiative.Genome medicine · 2022Article
- Better governance starts with better words: why responsible human tissue research demands a change of language.BMC medical ethics · 2022Article
- Health care users' acceptance of broad consent for storage of biological materials and associated data for research purposes in Uganda.Wellcome open research · 2022Article
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Authors and funding
2 authors.
Funding
Abstract
Data documenting poor understanding among research participants and real-time efforts to assess comprehension in large-scale studies are focusing new attention on informed consent comprehension. Within the context of biobanking consent, we previously convened a multidisciplinary panel to reach consensus about what information must be understood for a prospective participant's consent to be considered valid. Subsequently, we presented them with data from another study showing that many U.S. adults would fail to comprehend the information the panel had deemed essential. When asked to evaluate the importance of the information again, panelists' opinions shifted dramatically in the direction of requiring that less information be understood. Follow-up interviews indicated significant uncertainty about defining a threshold of understanding and what should happen when prospective participants are unable to grasp key information. These findings have important implications for urgently needed discussion of whether consent comprehension is an ethical requirement or an ethical aspiration.
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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.