ArticleGenetics in medicine : official journal of the American College of Medical Genetics2015
Informed consent for biobanking: consensus-based guidelines for adequate comprehension.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03141307 (The Effect of Electronic Informed Consent Information), which is not on this map. Cited by 37 papers.
What it found
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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.
The Effect of Electronic Informed Consent Information (EICI) on Residual Newborn Specimen Research
Who cites it
37 citing papers in PubMed.
- Interactive multimedia consent for biobanking: a randomized trial.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Trial
- Beyond mistrust: Diverse biobanking preferences among parents and adolescents with sickle cell disease.Genetics in medicine : official journal of the American College of Medical Genetics · 2026Article
- Future-use consent and human virome research: ethical challenges.Journal of virology · 2026Review
- Analysis of compliance and language use in broad informed consent forms in international multicenter clinical trials after the implementation of the 2018 common rule.BMC medical ethics · 2026Article
- Construction of an index system for workplace services by family doctors in China: a two-round Delphi study.BMC primary care · 2026Article
- Unlocking the potential of Asian genomic data: a collaborative framework for precision medicine innovation.GigaScience · 2026Review
- Biobank consent preferences and implications for a mixed consent model: biomedical researchers vs. community stakeholders in a semi-urban Yoruba community, Nigeria.Frontiers in genetics · 2026Article
- Article
- Using digital technologies to diagnose in the home: recommendations from a Delphi panel.NPJ digital medicine · 2024Article
- 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
- 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
- Variation among DNA banking consent forms: points for clinicians to bank on.Journal of community genetics · 2022Article
- Informed Consent and Protection of Personal Data in Genetic Research on COVID-19.Healthcare (Basel, Switzerland) · 2022Review
- Respecting values and perspectives in biobanking and genetic research governance: Outcomes of a qualitative study in Bengaluru, India.Wellcome open research · 2022Article
- Electronic Video Consent to Power Precision Health Research: A Pilot Cohort Study.JMIR formative research · 2021Article
- Developing model biobanking consent language: what matters to prospective participants?BMC medical research methodology · 2020Article
- Exploring Understanding of "Understanding": The Paradigm Case of Biobank Consent Comprehension.The American journal of bioethics : AJOB · 2019Article
- Paying Tribute to Henrietta Lacks at Tuskegee University and at The Virginia Henrietta Lacks Commission, Richmond, Virginia.Journal of health care for the poor and underserved · 2019Article
- Emerging infectious disease laboratory and diagnostic preparedness to accelerate vaccine development.Human vaccines & immunotherapeutics · 2019Review
- Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
purposeFederal regulations and best practice guidelines identify categories of information that should be communicated to prospective biobank participants during the informed consent process. However, uncertainty remains about which of this information participants must understand to provide valid consent.
methodsWe conducted a Delphi process to define "adequate comprehension" in the context of biobanking consent. The process involved an iterative series of three online surveys of a diverse panel of 51 experts, including genome scientists, biobank managers, ethics and policy experts, and community and participant representatives. We sought consensus (>70% agreement) concerning what specific details participants should know about 16 biobank consent topics.
resultsConsensus was achieved for 15 of the 16 consent topics. The exception was the comprehension needed regarding the Genetic Information Nondiscrimination Act.
conclusionOur Delphi process was successful in identifying a concise set of key points that prospective participants must grasp to provide valid consent for biobanking. Specifying the level of knowledge sufficient for individuals to make an informed choice provides a basis for improving consent forms and processes, as well as an absolute metric for assessing the effectiveness of other interventions to improve comprehension.Genet Med 17 3, 226-233.
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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.