ReviewAnnual review of genomics and human genetics2012
The tension between data sharing and the protection of privacy in genomics research.
Review in Annual review of genomics and human genetics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 99 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
99 citing papers in PubMed, 4 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
- Cosmetogenomics unveiled: a systematic review of AI, genomics, and the future of personalized skincare.Frontiers in artificial intelligence · 2025Pooled it
- REPRESENT recommendations: improving inclusion and trust in cancer early detection research.British journal of cancer · 2023Pooled it
- Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.European journal of human genetics : EJHG · 2015Pooled 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
- Participants' recall and understanding of genomic research and large-scale data sharing.Journal of empirical research on human research ethics : JERHRE · 2013Trial
- Parents' attitudes toward consent and data sharing in biobanks: A multisite experimental survey.AJOB empirical bioethicsTrial
- Exploring Patient Organization Involvement in Stem Cell Research: Insights from the Lifeworld.Journal of bioethical inquiry · 2026Article
- The Function of Non-invasive Prenatal Testing (NIPT) Request Forms in the Australian Context.Health care analysis : HCA : journal of health philosophy and policy · 2026Article
- Characterizing core outcomes of responsible stewardship for human genomic data in the cloud.BMC medical genomics · 2026Article
- Methodological opportunities in genomic data analysis to advance health equity.Nature reviews. Genetics · 2025Review
- How participation in deliberative engagement affects awareness of, and attitudes towards, genomics research and data sharing: evidence from rural Ghana.BMC medical ethics · 2025Article
- Quantifying the impact of biobanks and cohort studies.Proceedings of the National Academy of Sciences of the United States of America · 2025Article
- Experiences of participants with undiagnosed diseases and hereditary cancers during the initial phase of the Hong Kong genome project: a mixed-methods study.Human genomics · 2025Article
- The Role of Artificial Intelligence and Machine Learning Models in Antimicrobial Stewardship in Public Health: A Narrative Review.Antibiotics (Basel, Switzerland) · 2025Review
- How do study participants want to be informed about study results: Findings from a malaria trial in Cambodia, Ethiopia, Pakistan, and Indonesia.Journal of clinical and translational science · 2025Article
- Principles and Policy Recommendations for Comprehensive Genetic Data Governance.Proceedings of the AAAI/ACM Conference on AI, Ethics, and Society · 2025Article
- A data-driven approach to choosing privacy parameters for clinical trial data sharing under differential privacy.Journal of the American Medical Informatics Association : JAMIA · 2024Article
- Systemic lupus in the era of machine learning medicine.Lupus science & medicine · 2024Review
- Public attitudes towards genomic data sharing: results from a provincial online survey in Canada.BMC medical ethics · 2023Article
39 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
1 author.
Funding
Abstract
Next-generation sequencing and global data sharing challenge many of the governance mechanisms currently in place to protect the privacy of research participants. These challenges will make it more difficult to guarantee anonymity for participants, provide information to satisfy the requirements of informed consent, and ensure complete withdrawal from research when requested. To move forward, we need to improve the current governance systems for research so that they are responsive to individual privacy concerns but can also be effective at a global level. We need to develop a system of e-governance that can complement existing governance systems but that places greater reliance on the use of technology to ensure compliance with ethical and legal requirements. These new governance structures must be able to address the concerns of research participants while at the same time ensuring effective data sharing that promotes public trust in genomics research.
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.