ArticleAmerican journal of human genetics2009
Public opinion about the importance of privacy in biobank research.
Article in American journal of human genetics, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 162 papers, 4 of them syntheses 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
162 citing papers in PubMed, 4 syntheses or guidelines pooled it, 283 citations in OpenAlex.
- A systematic literature review of the 'commercialisation effect' on public attitudes towards biobank and genomic data repositories.Public understanding of science (Bristol, England) · 2024Pooled 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
- Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.European journal of human genetics : EJHG · 2015Pooled it
- Ethical aspects of human biobanks: a systematic review.Croatian medical journal · 2011Pooled 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
- Participant Satisfaction With a Preference-Setting Tool for the Return of Individual Research Results in Pediatric Genomic Research.Journal of empirical research on human research ethics : JERHRE · 2015Trial
- Balancing the risks and benefits of genomic data sharing: genome research participants' perspectives.Public health genomics · 2012Trial
- To share or not to share: a randomized trial of consent for data sharing in genome research.Genetics in medicine : official journal of the American College of Medical Genetics · 2011Trial
- "I make my own decisions": Views on precision medicine research participation decisions from adults with intellectual disability.HGG advances · 2026Article
- Article
- Firefighter Occupational Health and Safety Data Privacy: An Analysis of Statutory, Regulatory, and Contractual Governance Mechanisms.New solutions : a journal of environmental and occupational health policy : NS · 2026Article
- Mendelian Randomization Methods for Causal Inference: Estimands, Identification and Inference.Statistics in medicine · 2026Review
- Building a Decentralized Biobanking App for Research Transparency and Patient Engagement: Participatory Design Study.JMIR human factors · 2025Article
- Promise and Peril of a Genotype-First Approach to Mendelian Cardiovascular Disease.Journal of the American Heart Association · 2024Review
- Ready, Set, Sort! A User-Guide to Card Sorts for Community-Engaged Empirical Bioethics.Journal of empirical research on human research ethics : JERHRE · 2024Article
- Knowledge of genetics and attitudes toward genetic testing among university students in Indonesia.Journal of community genetics · 2024Article
- Trust and Support for Cancer Research Biobanks: Insights from Cancer Patients in Poland.Medical science monitor : international medical journal of experimental and clinical research · 2024Article
- When Biobanks Meet Religion: Association Between Religiosity and Attitudes of Polish Medical Students Toward Biobanking of Human Biological Material for Research Purposes.Journal of religion and health · 2024Article
- OASIS portable: User-friendly offline suite for secure survival analysis.Molecules and cells · 2024Article
- Do biobanks need pharmacists? Support of pharmacy students to biobanking of human biological material for pharmaceutical research and development.Frontiers in pharmacology · 2024Article
102 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
4 authors at 1 institution in 1 country.
Funding
Abstract
Concerns about privacy may deter people from participating in genetic research. Recruitment and retention of biobank participants requires understanding the nature and magnitude of these concerns. Potential participants in a proposed biobank were asked about their willingness to participate, their privacy concerns, informed consent, and data sharing. A representative survey of 4659 U.S. adults was conducted. Ninety percent of respondents would be concerned about privacy, 56% would be concerned about researchers having their information, and 37% would worry that study data could be used against them. However, 60% would participate in the biobank if asked. Nearly half (48%) would prefer to provide consent once for all research approved by an oversight panel, whereas 42% would prefer to provide consent for each project separately. Although 92% would allow academic researchers to use study data, 80% and 75%, respectively, would grant access to government and industry researchers. Concern about privacy was related to lower willingness to participate only when respondents were told that they would receive $50 for participation and would not receive individual research results back. Among respondents who were told that they would receive $200 or individual research results, privacy concerns were not related to willingness. Survey respondents valued both privacy and participation in biomedical research. Despite pervasive privacy concerns, 60% would participate in a biobank. Assuring research participants that their privacy will be protected to the best of researchers' abilities may increase participants' acceptance of consent for broad research uses of biobank data by a wide range of researchers.
Indexed as
Identifiers
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.