ArticlePublic health genomics2010
Public and biobank participant attitudes toward genetic research participation and data sharing.
Article in Public health genomics, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 160 papers, 5 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
160 citing papers in PubMed, 5 syntheses or guidelines pooled it.
- Context of data sharing practices in collaborative human genomic research in low and middle income countries: A systematic review.PloS one · 2026Pooled it
- 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
- Citizens' Attitudes, Knowledge, and Educational Needs in the Field of Omics Sciences: A Systematic Literature Review.Frontiers in genetics · 2020Pooled it
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.European journal of human genetics : EJHG · 2015Pooled it
- The survey of public perception and general knowledge of genomic research and medicine in Japan conducted by the Japan Agency for Medical Research and Development.Journal of human genetics · 2019Trial
- 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
- Online discussion effects on intention to participate in genetic research: A longitudinal experimental study.Psychology & health · 2016Trial
- Genome- and phenome-wide analyses of cardiac conduction identifies markers of arrhythmia risk.Circulation · 2013Trial
- 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
- Exploring patient motivations and preferences for medical data sharing with researchers: a simulation study using the iAgree platform.Journal of the American Medical Informatics Association : JAMIA · 2026Article
- Biobanking knowledge and donation willingness among musculoskeletal patients in England: a multisite cross-sectional study.BMJ open · 2026Article
- Navigating tensions between scientific advancement and ethical practice in biobanking: a qualitative study in Japan.Frontiers in genetics · 2026Article
- Returning aggregate research results to participants: a scoping review of current practices, preferences and challenges.BMJ open · 2025Article
- Consent and its discontents: the case of UK Biobank.Medicine, health care, and philosophy · 2025Article
- Article
- Respectful closure of a CEnR DNA integrity study: A bridge to sustained interactions with research participants.Journal of clinical and translational science · 2025Article
- 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
100 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.
Funding
Abstract
Research assessing attitudes toward consent processes for high-throughput genomic-wide technologies and widespread sharing of data is limited. In order to develop a better understanding of stakeholder views toward these issues, this cross-sectional study assessed public and biorepository participant attitudes toward research participation and sharing of genetic research data. Forty-nine individuals participated in 6 focus groups; 28 in 3 public focus groups and 21 in 3 NUgene biorepository participant focus groups. In the public focus groups, 75% of participants were women, 75% had some college education or more, 46% were African-American and 29% were Hispanic. In the NUgene focus groups, 67% of participants were women, 95% had some college education or more, and the majority (76%) of participants was Caucasian. Five major themes were identified in the focus group data: (a) a wide spectrum of understanding of genetic research; (b) pros and cons of participation in genetic research; (c) influence of credibility and trust of the research institution; (d) concerns about sharing genetic research data and need for transparency in the Policy for Sharing of Data in National Institutes of Health-Supported or Conducted Genome-Wide Association Studies; (e) a need for more information and education about genetic research. In order to increase public understanding and address potential concerns about genetic research, future efforts should be aimed at involving the public in genetic research policy development and in identifying or developing appropriate educational strategies to meet the public's needs.
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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.