ArticleGenetics in medicine : official journal of the American College of Medical Genetics2017
Improving biobank consent comprehension: a national randomized survey to assess the effect of a simplified form and review/retest intervention.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 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.
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Who cites it
21 citing papers in PubMed, 40 citations in OpenAlex.
- Reconceptualizing Informed Consent as the Objective Activity of Real Person.Journal of bioethical inquiry · 2026Article
- Sharing digital health data responsibly: Balancing open science with participant privacy.PLOS digital health · 2026Article
- Should recipient parents have access to gamete donors' raw genomic data? Clinical, legal, and ethical considerations.Journal of assisted reproduction and genetics · 2025Article
- Informed Consent and Comprehension after the Pragmatic Turn.The American journal of bioethics : AJOB · 2025Article
- Perspectives of parents receiving normal results from genomic newborn screening: a mixed-methods evaluation from the early check program.Frontiers in genetics · 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
- Understanding of Critical Elements of Informed Consent in Genomic Research: A Case of a Paediatric HIV-TB Research Project in Uganda.Journal of empirical research on human research ethics : JERHRE · 2022Article
- Standard operating procedures for biobank in oncology.Frontiers in molecular biosciences · 2022Article
- Returning actionable genomic results in a research biobank: Analytic validity, clinical implementation, and resource utilization.American journal of human genetics · 2021Article
- Electronic Video Consent to Power Precision Health Research: A Pilot Cohort Study.JMIR formative research · 2021Article
- Informed consent: Old and new challenges in the context of the COVID-19 pandemic.Journal of clinical and translational science · 2021Article
- "My Research Is Their Business, but I'm Not Their Business": Patient and Clinician Perspectives on Commercialization of Precision Oncology Data.The oncologist · 2020Article
- Shortened consent forms for genome-wide sequencing: Parent and provider perspectives.Molecular genetics & genomic medicine · 2020Article
- Developing model biobanking consent language: what matters to prospective participants?BMC medical research methodology · 2020Article
- Patient Preferences for Use of Archived Biospecimens from Oncology Trials When Adequacy of Informed Consent Is Unclear.The oncologist · 2020Article
- Factors Influencing Participation in Biospecimen Research among Parents of Youth with Mental Health Conditions.Public health genomics · 2020Article
- Exploring Understanding of "Understanding": The Paradigm Case of Biobank Consent Comprehension.The American journal of bioethics : AJOB · 2019Article
- Challenges that face the establishment of diabetes biobank in Jordan: a qualitative analysis of an online discussion forum.Journal of multidisciplinary healthcare · 2019Article
- Article
- Developing informed consent materials for non-English-speaking participants: An analysis of four professional firm translations from English to Spanish.Clinical trials (London, England) · 2018Article
Corrections and comments
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Authors and funding
5 authors at 2 institutions in 1 country.
Funding
Abstract
purposeTo determine the individual and combined effects of a simplified form and a review/retest intervention on biobanking consent comprehension.
methodsWe conducted a national online survey in which participants were randomized within four educational strata to review a simplified or traditional consent form. Participants then completed a comprehension quiz; for each item answered incorrectly, they reviewed the corresponding consent form section and answered another quiz item on that topic.
resultsConsistent with our first hypothesis, comprehension among those who received the simplified form was not inferior to that among those who received the traditional form. Contrary to expectations, receipt of the simplified form did not result in significantly better comprehension compared with the traditional form among those in the lowest educational group. The review/retest procedure significantly improved quiz scores in every combination of consent form and education level. Although improved, comprehension remained a challenge in the lowest-education group. Higher quiz scores were significantly associated with willingness to participate.
conclusionEnsuring consent comprehension remains a challenge, but simplified forms have virtues independent of their impact on understanding. A review/retest intervention may have a significant effect, but assessing comprehension raises complex questions about setting thresholds for understanding and consequences of not meeting them.Genet Med advance online publication 13 October 2016.
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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.