ArticlePublic health genomics2011
Assessing the privacy risks of data sharing in genomics.
Article in Public health genomics, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 52 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
52 citing papers in PubMed, 1 synthesis or guideline pooled it, 123 citations in OpenAlex.
- Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.European journal of human genetics : EJHG · 2015Pooled it
- Eras of bioinformatics technologies from command-line interfaces to artificial intelligence (AI) chatbots.Briefings in bioinformatics · 2026Review
- Balancing protection of participants and other stakeholders with openness: African lessons from the MADIVA data sharing and access policy.Global health action · 2025Article
- Applications of Genome Sequencing in Infectious Diseases: From Pathogen Identification to Precision Medicine.Pharmaceuticals (Basel, Switzerland) · 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
- What are patient perspectives on privacy and trust in digital genomic tools? A qualitative study.Journal of genetic counseling · 2025Article
- Best practices for data management and sharing in experimental biomedical research.Physiological reviews · 2024Review
- Assessing Privacy Vulnerabilities in Genetic Data Sets: Scoping Review.JMIR bioinformatics and biotechnology · 2024Article
- The five pillars of computational reproducibility: bioinformatics and beyond.Briefings in bioinformatics · 2023Article
- Federated Analysis for Privacy-Preserving Data Sharing: A Technical and Legal Primer.Annual review of genomics and human genetics · 2023Review
- Canadians' opinions towards COVID-19 data-sharing: a national cross-sectional survey.BMJ open · 2023Article
- Sharing GWAS summary statistics results in more citations.Communications biology · 2023Article
- Enhancing public health research: a viewpoint report on the transition to secure, cloud-based systems.Frontiers in public health · 2023Article
- Public Health Genomics: Time to Sharpen the Focus.Public health genomics · 2023Article
- Controlling my genome with my smartphone: first clinical experiences of the PROMISE system.Clinical research in cardiology : official journal of the German Cardiac Society · 2022Article
- Attitudes of Costa Rican individuals towards donation of personal genetic data for research.Personalized medicine · 2021Article
- A deliberative study of public attitudes towards sharing genomic data within NHS genomic medicine services in England.Public understanding of science (Bristol, England) · 2020Article
- Privacy challenges and research opportunities for genomic data sharing.Nature genetics · 2020Review
- Ethical, legal, and social issues (ELSI) in rare diseases: a landscape analysis from funders.European journal of human genetics : EJHG · 2020Article
- Openness in Big Data and Data Repositories: The Application of an Ethics Framework for Big Data in Health and Research.Asian bioethics review · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
Abstract
The protection of identity of participants in medical research has traditionally been guaranteed by the maintenance of the confidentiality of health information through mechanisms such as only releasing data in an aggregated form or after identifying variables have been removed. This protection of privacy is regarded as a fundamental principle of research ethics, through which the support of research participants and the public is maintained. Whilst this traditional model was adopted for genetics and genomics research, and was generally considered broadly fit for purpose, we argue that this approach is increasingly untenable in genomics. Privacy risk assessments need to have regard to the whole data environment, not merely the quality of the dataset to be released in isolation. As sources of data proliferate, issues of privacy protection are increasingly problematic in relation to the release of genomic data. However, we conclude that, by paying careful attention to potential pitfalls, scientific funders and researchers can take an important part in attempts to safeguard the public and ensure the continuation of potentially important scientific 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.