ArticleLife sciences, society and policy2015
Challenges of web-based personal genomic data sharing.
Article in Life sciences, society and policy, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers.
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
18 citing papers in PubMed.
- Technology Access, Digital Literacy, and Enrollment Support Preferences in a Federally Qualified Health Center: Cross-Sectional Study.JMIR formative research · 2026Article
- Australian Attitudes Towards Waivers of Consent Within the Context of Genomic Data Sharing.Journal of empirical research on human research ethics : JERHRE · 2024Article
- Balancing the safeguarding of privacy and data sharing: perceptions of genomic professionals on patient genomic data ownership in Australia.European journal of human genetics : EJHG · 2024Article
- The reuse of genetic information in research and informed consent.European journal of human genetics : EJHG · 2023Article
- Editorial: Advances in genomic and genetic tools, and their applications for understanding embryonic development and human diseases.Frontiers in cell and developmental biology · 2022Article
- A Blockchain-Based Dynamic Consent Architecture to Support Clinical Genomic Data Sharing (ConsentChain): Proof-of-Concept Study.JMIR medical informatics · 2021Article
- Genetic and epigenetic analyses of panic disorder in the post-GWAS era.Journal of neural transmission (Vienna, Austria : 1996) · 2020Review
- Dynamic-informed consent: A potential solution for ethical dilemmas in population sequencing initiatives.Computational and structural biotechnology journal · 2020Review
- DNA Data Marketplace: An Analysis of the Ethical Concerns Regarding the Participation of the Individuals.Frontiers in genetics · 2019Article
- Informed Consent in Biomedical Research.Computational and structural biotechnology journal · 2019Review
- The challenges of the expanded availability of genomic information: an agenda-setting paper.Journal of community genetics · 2018Article
- Third party interpretation of raw genetic data: an ethical exploration.European journal of human genetics : EJHG · 2017Review
- Ethical sharing of health data in online platforms - which values should be considered?Life sciences, society and policy · 2017Article
- Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.BMC medical ethics · 2017Article
- Legal assessment tool (LAT): an interactive tool to address privacy and data protection issues for data sharing.BMC medical informatics and decision making · 2016Article
- How Will Big Data Improve Clinical and Basic Research in Radiation Therapy?International journal of radiation oncology, biology, physics · 2016Article
- Providing Access to Genomic Variant Knowledge in a Healthcare Setting: A Vision for the ClinGen Electronic Health Records Workgroup.Clinical pharmacology and therapeutics · 2016Article
- Diversity, Profit, Control: An Empirical Study of Industry Employees' Views on Ethics in Private Sector Genomics.AJOB empirical bioethicsArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
In order to study the relationship between genes and diseases, the increasing availability and sharing of phenotypic and genotypic data have been promoted as an imperative within the scientific community. In parallel with data sharing practices by clinicians and researchers, recent initiatives have been observed in which individuals are sharing personal genomic data. The involvement of individuals in such initiatives is facilitated by the increased accessibility of personal genomic data, offered by private test providers along with availability of online networks. Personal webpages and on-line data sharing platforms such as Consent to Research (Portable Legal Consent), Free the Data, and Genomes Unzipped are being utilized to host and share genotypes, electronic health records and family history uploaded by individuals. Although personal genomic data sharing initiatives vary in nature, the emphasis on the individuals' control on their data in order to benefit research and ultimately health care has seen as a key theme across these initiatives. In line with the growing practice of personal genomic data sharing, this paper aims to shed light on the potential challenges surrounding these initiatives. As in the course of these initiatives individuals are solicited to individually balance the risks and benefits of sharing their genomic data, their awareness of the implications of personal genomic data sharing for themselves and their family members is a necessity. Furthermore, given the sensitivity of genomic data and the controversies around their complete de-identifiability, potential privacy risks and harms originating from unintended uses of data have to be taken into consideration.
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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.