Trial reportJournal of empirical research on human research ethics : JERHRE2013
Participants' recall and understanding of genomic research and large-scale data sharing.
Trial report in Journal of empirical research on human research ethics : JERHRE, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 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
28 citing papers in PubMed.
- Trial
- Future-use consent and human virome research: ethical challenges.Journal of virology · 2026Review
- Ethical Challenges of Obtaining Informed Consent: Qualitative Research on the Perspectives of Tuberculosis Patients Participating in Human Genomic Research in Ethiopia.Developing world bioethics · 2026Article
- Privacy in perspective: research participants' priorities and concerns related to sharing data generated in human neuroscience studies.Neuroethics · 2025Article
- Factors Influencing Informed Consent Preferences in Digital Health Research: Survey Study of Prospective Participants.Journal of medical Internet research · 2025Article
- All you Need is Trust? Public Perspectives on Consenting to Participate in Genomic Research in the Sri Lankan District of Colombo.Asian bioethics review · 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
- Participant recall and understandings of information on biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa.BMC medical ethics · 2022Article
- "A Question of Trust" and "a Leap of Faith"-Study Participants' Perspectives on Consent, Privacy, and Trust in Smart Home Research: Qualitative Study.JMIR mHealth and uHealth · 2021Article
- Balancing scientific interests and the rights of participants in designing a recall by genotype study.European journal of human genetics : EJHG · 2021Article
- Considerations for an integrated population health databank in Africa: lessons from global best practices.Wellcome open research · 2021Article
- Trust in Centralized Large-Scale Data Repository: A Qualitative Analysis.Journal of empirical research on human research ethics : JERHRE · 2020Article
- Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review.Journal of medical Internet research · 2020Article
- Dwarna: a blockchain solution for dynamic consent in biobanking.European journal of human genetics : EJHG · 2020Article
- Revised Common Rule Changes to the Consent Process and Consent Form.Ochsner journal · 2020Review
- What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda.Global bioethics = Problemi di bioetica · 2019Article
- Informed Decision-Making in the Context of Prenatal Chromosomal Microarray.Journal of genetic counseling · 2018Article
- The ethics conundrum in Recall by Genotype (RbG) research: Perspectives from birth cohort participants.PloS one · 2018Article
- Development of Plain Language Supplemental Materials for the Biobank Informed Consent Process.Journal of cancer education : the official journal of the American Association for Cancer Education · 2017Article
- An open access pilot freely sharing cancer genomic data from participants in Texas.Scientific data · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
As genomic researchers are urged to openly share generated sequence data with other researchers, it is important to examine the utility of informed consent documents and processes, particularly as these relate to participants' engagement with and recall of the information presented to them, their objective or subjective understanding of the key elements of genomic research (e.g., data sharing), as well as how these factors influence or mediate the decisions they make. We conducted a randomized trial of three experimental informed consent documents (ICDs) with participants (n = 229) being recruited to genomic research studies; each document afforded varying control over breadth of release of genetic information. Recall and understanding, their impact on data sharing decisions, and comfort in decision making were assessed in a follow-up structured interview. Over 25% did not remember signing an ICD to participate in a genomic study, and the majority (54%) could not correctly identify with whom they had agreed to share their genomic data. However, participants felt that they understood enough to make an informed decision, and lack of recall did not impact final data sharing decisions or satisfaction with participation. These findings raise questions about the types of information participants need in order to provide valid informed consent, and whether subjective understanding and comfort with decision making are sufficient to satisfy the ethical principle of respect for persons.
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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.