ArticleJournal of community genetics2017
De-identified genomic data sharing: the research participant perspective.
Article in Journal of community genetics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 45 papers, 7 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
45 citing papers in PubMed, 7 syntheses or guidelines pooled it.
- 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
- Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.Journal of medical Internet research · 2024Pooled it
- Measuring the willingness to share personal health information: a systematic review.Frontiers in public health · 2023Pooled 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
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- Your DNA, your concerns: public attitudes toward donation of genomic data for research in four Latin American countries.Journal of community genetics · 2026Article
- Individuals' preferences for future biological sample and genomic data sharing in the Australian Reproductive Genetic Carrier Screening Project.European journal of human genetics : EJHG · 2026Article
- Survey on new technologies and precision medicine to advance healthcare.Journal of community genetics · 2026Article
- Attitudes and practices of researchers on the sharing of genomic data: a qualitative study in Uganda.BMC medical ethics · 2026Article
- Data Sharing, Biopsies and Patient Confidentiality in a Precision Medicine Trial for Childhood Cancer: A Mixed Method Study of Parents, Oncologists, and Scientists' Perspectives.Journal of personalized medicine · 2025Article
- Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis.NPJ digital medicine · 2025Article
- "ItResearch ethics · 2025Article
- Towards a trusted genomics repository: Identifying commercialisation fears and preferred forms of governance across segments of the community.Public understanding of science (Bristol, England) · 2025Article
- A Comprehensive Review of Bioinformatics Tools for Genomic Biomarker Discovery Driving Precision Oncology.Genes · 2024Review
- Australian Attitudes Towards Waivers of Consent Within the Context of Genomic Data Sharing.Journal of empirical research on human research ethics : JERHRE · 2024Article
- Health data sharing attitudes towards primary and secondary use of data: a systematic review.EClinicalMedicine · 2024Article
- Comparing Attitudes About Genomic Privacy and Data Sharing in Adolescents and Parents of Children Enrolled in a Genomic Research Repository.AJOB empirical bioethics · 2024Article
- Factors Influencing the Sharing of Personal Health Data Based on the Integrated Theory of Privacy Calculus and Theory of Planned Behaviors Framework: Results of a Cross-Sectional Study of Chinese Patients in the Yangtze River Delta.Journal of medical Internet research · 2023Observational
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
Combining datasets into larger and separate datasets is becoming increasingly common, and personal identifiers are often removed in order to maintain participant anonymity. Views of research participants on the use of de-identified data in large research datasets are important for future projects, such as the Precision Medicine Initiative and Cancer Moonshot Initiative. This quantitative study set in the USA examines participant preferences and evaluates differences by demographics and cancer history. Study participants were recruited from the Northwest Cancer Genetics Registry and included cancer patients, their relatives, and controls. A secure online survey was administered to 450 participants. While the majority participants were not concerned about personal identification when participating in a genetic study using de-identified data, they expressed their concern that researchers protect their privacy and information. Most participants expressed a desire that their data should be available for as many research studies as possible, and in doing so, they would increase their chance of receiving personal health information. About 20% of participants felt that a link should not be maintained between the participant and their de-identified data. Reasons to maintain a link included an ability to return individual health results and an ability to support further research. Knowledge of participants' attitudes regarding the use of data into a research repository and the maintenance of a link to de-identified data is critical to the success of recruitment into future genomic research projects.
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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.