A parasite's perspective on data sharing

Park, YoSon; Greene, Casey S.

doi:10.1093/gigascience/giy129

Cited by 9 publications

(8 citation statements)

References 6 publications

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“…The Cancer Genome Atlas (TCGA) data set provides somatic mutation, gene expression estimates, a limited set of clinical metadata and certain other profiling information, which were made available in a fully-open form and available for publication by anyone after an embargo period 43 . TCGA has become a remark ably successful example of a public, reusable data resource laying the groundwork for numerous discoveries 44 . At a smaller scale individually -although covering more biological samples -microarray gene expression data sets are also publicly shared in data type-specific reposi tories, such as ArrayExpress 45 and the Gene Expression Omnibus (GEO) 46 .…”

Section: How Are Data Shared?mentioning

confidence: 99%

Responsible, practical genomic data sharing that accelerates research

et al. 2020

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Data sharing anchors reproducible science, but expectations and best practices are often nebulous. Communities of funders, researchers and publishers continue to grapple with what should be required or encouraged. To illuminate the rationales for sharing data, the technical challenges and the social and cultural challenges, we consider the stakeholders in the scientific enterprise. In biomedical research, participants are key among those stakeholders. Ethical sharing requires considering both the value of research efforts and the privacy costs for participants. We discuss current best practices for various types of genomic data, as well as opportunities to promote ethical data sharing that accelerates science by aligning incentives.

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Section: How Are Data Shared?mentioning

confidence: 99%

Responsible, practical genomic data sharing that accelerates research

et al. 2020

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“…In the study commissioned by the Wellcome Trust, the main perceived barriers to sharing data were fear of misuse or misinterpretation, fear of losing publication opportunities, and time and effort to prepare and deposit data [24]. Ultimately, one of researchers' concerns is the fear that other researchers using the data will find procedural errors, different results, or omissions in the original work that would undermine their work [8,31,32], although this could largely be avoided by ensuring the quality of the data.…”

Section: Literature Review and Comparison With Other Studiesmentioning

confidence: 99%

Research Data Sharing in Spain: Exploring Determinants, Practices, and Perceptions

Aleixandre-Benavent

Vidal-Infer

Alonso-Arroyo

et al. 2020

Data

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This work provides an overview of a Spanish survey on research data, which was carried out within the framework of the project Datasea at the beginning of 2015. It is covered by the objectives of sustainable development (goal 9) to support the research. The purpose of the study was to identify the habits and current experiences of Spanish researchers in the health sciences in relation to the management and sharing of raw research data. Method: An electronic questionnaire composed of 40 questions divided into three blocks was designed. The three Section s contained questions on the following aspects: (A) personal information; (B) creation and reuse of data; and (C) preservation of data. The questionnaire was sent by email to a list of universities in Spain to be distributed among their researchers and professors. A total of 1063 researchers completed the questionnaire. More than half of the respondents (54.9%) lacked a data management plan; nearly a quarter had storage systems for the research group; 81.5% used personal computers to store data; “Contact with colleagues” was the most frequent means used to locate and access other researchers’ data; and nearly 60% of researchers stated their data were available to the research group and collaborating colleagues. The main fears about sharing were legal questions (47.9%), misuse or interpretation of data (42.7%), and loss of authorship (28.7%). The results allow us to understand the state of data sharing among Spanish researchers and can serve as a basis to identify the needs of researchers to share data, optimize existing infrastructure, and promote data sharing among those who do not practice it yet.

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“…3,7,8 Considering that research data must enable studies' replication and validation, data must be reliable, traceable, reusable, and understandable. 9 Data controllers must also address integrity and privacy requirements to effectively make data available. 10 Data interoperability in information systems plays a significant role in the process of building democratic and global research databases to ensure that health research centers can share and use data with an expected meaning and in a standardized format.…”

Section: Introductionmentioning

confidence: 99%

A Permissioned Blockchain Network for Security and Sharing of De-identified Tuberculosis Research Data in Brazil

et al. 2020

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Background Tuberculosis (TB) is an infectious disease and is among the top 10 causes of death in the world, and Brazil is part of the top 30 high TB burden countries. Data collection is an essential practice in health studies, and the adoption of electronic data capture (EDC) systems can positively increase the experience of data acquisition and analysis. Also, data-sharing capabilities are crucial to the construction of efficient and effective evidence-based decision-making tools for managerial and operational actions in TB services. Data must be held secure and traceable, as well as available and understandable, for authorized parties. Objectives In this sense, this work aims to propose a blockchain-based approach to build a reusable, decentralized, and de-identified dataset of TB research data, while increasing transparency, accountability, availability, and integrity of raw data collected in EDC systems. Methods After identifying challenges and gaps, a solution was proposed to tackle them, considering its relevance for TB studies. Data security issues are being addressed by a blockchain network and a lightweight and practical governance model. Research Electronic Data Capture (REDCap) and KoBoToolbox are used as EDC systems in TB research. Mechanisms to de-identify data and aggregate semantics to data are also available. Results A permissioned blockchain network was built using Kaleido platform. An integration engine integrates the EDC systems with the blockchain network, performing de-identification and aggregating meaning to data. A governance model addresses operational and legal issues for the proper use of data. Finally, a management system facilitates the handling of necessary metadata, and additional applications are available to explore the blockchain and export data. Conclusions Research data are an important asset not only for the research where it was generated, but also to underpin studies replication and support further investigations. The proposed solution allows the delivery of de-identified databases built in real time by storing data in transactions of a permissioned network, including semantic annotations, as data are being collected in TB research. The governance model promotes the correct use of the solution.

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A parasite's perspective on data sharing

Cited by 9 publications

References 6 publications

Responsible, practical genomic data sharing that accelerates research

Responsible, practical genomic data sharing that accelerates research

Research Data Sharing in Spain: Exploring Determinants, Practices, and Perceptions

A Permissioned Blockchain Network for Security and Sharing of De-identified Tuberculosis Research Data in Brazil

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