ArticleJournal of empirical research on human research ethics : JERHRE2010
Glad you asked: participants' opinions of re-consent for dbGap data submission.
Article in Journal of empirical research on human research ethics : JERHRE, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 73 papers, 1 of them a synthesis that pooled it.
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
73 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The research participant perspective related to the conduct of genomic cohort studies: A systematic review of the quantitative literature.Translational behavioral medicine · 2018Pooled it
- Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.American journal of human genetics · 2017Trial
- Balancing the risks and benefits of genomic data sharing: genome research participants' perspectives.Public health genomics · 2012Trial
- Attitudes of Longitudinal Study Participants and Members of the Public Towards Data Sharing for Secondary Research: A Survey Based Approach.Journal of empirical research on human research ethics : JERHRE · 2026Article
- 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
- Re-consent practices in biobanks in Japan: current status and stakeholder perspectives.Journal of community genetics · 2025Article
- Lessons for a learning health system: Effectively communicating to patients about research with their health information and biospecimens.Learning health systems · 2025Article
- Genetic tests as the strongest motivator of cooperation between participants and biobanks-Findings from cross-sectional study.Frontiers in genetics · 2024Article
- Studying the impact of translational genomic research: Lessons from eMERGE.American journal of human genetics · 2023Review
- A one-size-fits-all approach to data-sharing will not suffice in lifecourse research: a grounded theory study of data-sharing from the perspective of participants in a 50-year-old lifecourse study about health and development.BMC medical research methodology · 2023Article
- Investigating people's attitudes towards participating in longitudinal health research: an intersectionality-informed perspective.International journal for equity in health · 2023Article
- Public awareness and attitudes toward biobank and sample donation: A regional Chinese survey.Frontiers in public health · 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
- Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey.Journal of medical Internet research · 2021Article
- Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore.Journal of personalized medicine · 2021Article
- Advances in the field of intranasal oxytocin research: lessons learned and future directions for clinical research.Molecular psychiatry · 2021Review
- Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder.Journal of autism and developmental disorders · 2020Article
- Article
- Revised Common Rule Changes to the Consent Process and Consent Form.Ochsner journal · 2020Review
- Public Attitudes toward Biobanking of Human Biological Material for Research Purposes: A Literature Review.International journal of environmental research and public health · 2019Review
13 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
No consensus exists about when researchers need additional participant consent (reconsent) to submit existing data to the federal database of Genotypes and Phenotypes (dbGaP). Re-consent for submission of their data to dbGaP was sought from 1,340 study participants, 1,159 (86%) of whom agreed. We invited the first 400 of those who agreed to complete a telephone survey about their reasoning for their consent decision and their satisfaction with the reconsent process; 365 participants completed the survey. Respondents reported that it was very (69%) or somewhat (21%) important that they were asked for their permission. Many respondents considered alternatives to consent, such as notification-only or opt-out, to be unacceptable (67% and 40%, respectively). These results suggest that re-consent for dbGaP deposition may be advisable in certain cases to anticipate and honor participant preferences.
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What OpenQuestion holds
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.