scholarly journals Data ownership revisited: clarifying data accountabilities in times of big data and analytics

2021 ◽  
pp. 1-17
Author(s):  
Martin Fadler ◽  
Christine Legner
Keyword(s):  
Big Data ◽  
Data Ownership

scholarly journals The Academic Viewpoint on Patient Data Ownership in the Context of Big Data: Scoping Review

10.2196/22214 ◽  
2020 ◽  
Vol 22 (8) ◽  
pp. e22214
Author(s):  
Martin Mirchev ◽  
Iskra Mircheva ◽  
Albena Kerekovska
Keyword(s):  
Big Data ◽  
Medical Research ◽  
Information And Communication Technologies ◽  
Patient Information ◽  
Scoping Review ◽  
Patient Data ◽  
Academic Community ◽  
The Body ◽  
Scoping Reviews ◽  
Data Ownership

Background The ownership of patient information in the context of big data is a relatively new problem, which is not yet fully recognized by the medical academic community. The problem is interdisciplinary, incorporating legal, ethical, medical, and aspects of information and communication technologies, requiring a sophisticated analysis. However, no previous scoping review has mapped existing studies on the subject. Objective This study aims to map and assess published studies on patient data ownership in the context of big data as viewed by the academic community. Methods A scoping review was conducted based on the 5-stage framework outlined by Arksey and O’Malley and further developed by Levac, Colquhoun, and O’Brien. The organization and reporting of results of the scoping review were conducted according to PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses and its extensions for Scoping Reviews). A systematic and comprehensive search of 4 scientific information databases, PubMed, ScienceDirect, Scopus, and Springer, was performed for studies published between January 2000 and October 2019. Two authors independently assessed the eligibility of the studies and the extracted data. Results The review included 32 eligible articles authored by academicians that correspond to 3 focus areas: problem (ownership), area (health care), and context (big data). Five major aspects were studied: the scientific area of publications, aspects and academicians’ perception of ownership in the context of big data, proposed solutions, and practical applications for data ownership issues in the context of big data. The aspects in which publications consider ownership of medical data are not clearly distinguished but can be summarized as ethical, legal, political, and managerial. The ownership of patient data is perceived primarily as a challenge fundamental to conducting medical research, including data sales and sharing, and to a lesser degree as a means of control, problem, threat, and opportunity also in view of medical research. Although numerous solutions falling into 3 categories, technology, law, and policy, were proposed, only 3 real applications were discussed. Conclusions The issue of ownership of patient information in the context of big data is poorly researched; it is not addressed consistently and in its integrity, and there is no consensus on policy decisions and the necessary legal regulations. Future research should investigate the issue of ownership as a core research question and not as a minor fragment among other topics. More research is needed to increase the body of knowledge regarding the development of adequate policies and relevant legal frameworks in compliance with ethical standards. The combined efforts of multidisciplinary academic teams are needed to overcome existing gaps in the perception of ownership, the aspects of ownership, and the possible solutions to patient data ownership issues in the reality of big data.

Big Data Ownership: Do we Need a New Regulatory Framework?

2019 ◽  
Vol 18 (1) ◽  
pp. 117-133
Author(s):  
Andris Tauriņš
Keyword(s):  
Big Data ◽  
Traffic Accidents ◽  
State Institutions ◽  
Contractual Relationships ◽  
Data Ownership ◽  
New Type ◽  
The Individual ◽  
The Right ◽  
Ip Law ◽  
The City

Big data is the new oil – but who has the right to own it? Is the owner the creator of the individual data or the owners of data processing systems which add value to the mass of data – or should the information be shared for free with state institutions, for example, with the goal of limiting the amounts of traffic accidents in the city? This is one of the debates of our time. However, it seems that current frameworks, whether regarding ip law or trade secrets regulations, do not provide sufficient answers. Problems also arise with the offer of contractual relationships or licensing. That initiates the thought that a new type of regulation might be needed.

Data in Society

2019 ◽  
Keyword(s):  
Big Data ◽  
Technological Change ◽  
Data Analytics ◽  
Statistical Data ◽  
Social Progress ◽  
Evidence Based ◽  
Political Debate ◽  
Everyday Lives ◽  
Data Ownership ◽  
The Media

Statistical data and evidence-based claims are increasingly central to our everyday lives. Critically examining ‘Big Data’, this book charts the recent explosion in sources of data, including those precipitated by global developments and technological change. It sets out changes and controversies related to data harvesting and construction, dissemination and data analytics by a range of private, governmental and social organisations in multiple settings. Analysing the power of data to shape political debate, the presentation of ideas to us by the media, and issues surrounding data ownership and access, the authors suggest how data can be used to uncover injustices and to advance social progress

scholarly journals Application of a Blockchain Platform to Manage and Secure Personal Genomic Data: A Case Study of LifeCODE.ai in China (Preprint)

2019 ◽  
Author(s):  
Xiao-Ling Jin ◽  
Miao Zhang ◽  
Zhongyun Zhou ◽  
Xiaoyu Yu
Keyword(s):  
Big Data ◽  
Data Sharing ◽  
Data Security ◽  
Psychological Empowerment ◽  
Rapid Development ◽  
Genomic Data ◽  
Personal Genomic ◽  
Research And Innovation ◽  
Blockchain Technology ◽  
Data Ownership

BACKGROUND The rapid development of genetic and genomic technologies, such as next-generation sequencing and genome editing, has made disease treatment much more precise and effective. The technologies’ value can only be realized by the aggregation and analysis of people’s genomic and health data. However, the collection and sharing of genomic data has many obstacles, including low data quality, information islands, tampering distortions, missing records, leaking of private data, and gray data transactions. OBJECTIVE This study aimed to prove that emerging blockchain technology provides a solution for the protection and management of sensitive personal genomic data because of its decentralization, traceability, encryption algorithms, and antitampering features. METHODS This paper describes the case of a blockchain-based genomic big data platform, LifeCODE.ai, to illustrate the means by which blockchain enables the storage and management of genomic data from the perspectives of data ownership, data sharing, and data security. RESULTS Blockchain opens up new avenues for dealing with data ownership, data sharing, and data security issues in genomic big data platforms and realizes the psychological empowerment of individuals in the platform. CONCLUSIONS The blockchain platform provides new possibilities for the management and security of genetic data and can help realize the psychological empowerment of individuals in the process, and consequently, the effects of data self-governance, incentive-sharing, and security improvement can be achieved. However, there are still some problems in the blockchain that have not been solved, and which require continuous in-depth research and innovation in the future.

scholarly journals Survey Research in Times of Big Data

2022 ◽  
Author(s):  
Pablo Cabrera-Álvarez
Keyword(s):  
Social Sciences ◽  
Big Data ◽  
Data Sources ◽  
Gps Data ◽  
Redes Sociales ◽  
Relevant Research ◽  
Data Ownership ◽  
Survey Costs ◽  
Research Questions ◽  
Accessibility Issues

La encuesta es la técnica de investigación predominante en la investigación en Ciencias Sociales. Sin embargo, la aparición de otras fuentes de datos como las publicaciones en redes sociales o los datos generados por GPS suponen nuevas oportunidades para la investigación. En este escenario, algunas voces han defendido la idea de que, debido a su menor coste y la velocidad a la que se generan, los big data irán sustituyendo progresivamente a los datos de encuesta. Sin embargo, este optimismo contrasta con los problemas de calidad y accesibilidad que presentan los big data como la fata de cobertura de algunos grupos de la población o el acceso restringido a alguna de estas fuentes. Este artículo, a partir de una revisión profunda de la literatura de los últimos años, explora como la cooperación entre los big data y las encuestas resulta en mejoras significativas de la calidad de los datos y una reducción de los costes. Nowadays, while surveys still dominate the research landscape in social sciences, alternative data sources such as social media posts or GPS data open a whole range of opportunities for researchers. In this scenario, some voices advocate for a progressive substitution of survey data. They anticipate that big data, which is cheaper and faster than surveys, will be enough to answer relevant research questions. However, this optimism contrasts with all the quality and accessibility issues associated with big data such as the lack of coverage or data ownership and restricted accessibility.  The aim of this paper is to explore how, nowadays, the combination of big data and surveys results in significant improvements in data quality and survey costs.

scholarly journals The Academic Viewpoint on Patient Data Ownership in the Context of Big Data: Scoping Review (Preprint)

2020 ◽  
Author(s):  
Martin Mirchev ◽  
Iskra Mircheva ◽  
Albena Kerekovska
Keyword(s):  
Big Data ◽  
Medical Research ◽  
Information And Communication Technologies ◽  
Patient Information ◽  
Scoping Review ◽  
Patient Data ◽  
Academic Community ◽  
The Body ◽  
Scoping Reviews ◽  
Data Ownership

BACKGROUND The ownership of patient information in the context of big data is a relatively new problem, which is not yet fully recognized by the medical academic community. The problem is interdisciplinary, incorporating legal, ethical, medical, and aspects of information and communication technologies, requiring a sophisticated analysis. However, no previous scoping review has mapped existing studies on the subject. OBJECTIVE This study aims to map and assess published studies on patient data ownership in the context of big data as viewed by the academic community. METHODS A scoping review was conducted based on the 5-stage framework outlined by Arksey and O’Malley and further developed by Levac, Colquhoun, and O’Brien. The organization and reporting of results of the scoping review were conducted according to PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses and its extensions for Scoping Reviews). A systematic and comprehensive search of 4 scientific information databases, PubMed, ScienceDirect, Scopus, and Springer, was performed for studies published between January 2000 and October 2019. Two authors independently assessed the eligibility of the studies and the extracted data. RESULTS The review included 32 eligible articles authored by academicians that correspond to 3 focus areas: problem (ownership), area (health care), and context (big data). Five major aspects were studied: the scientific area of publications, aspects and academicians’ perception of ownership in the context of big data, proposed solutions, and practical applications for data ownership issues in the context of big data. The aspects in which publications consider ownership of medical data are not clearly distinguished but can be summarized as ethical, legal, political, and managerial. The ownership of patient data is perceived primarily as a challenge fundamental to conducting medical research, including data sales and sharing, and to a lesser degree as a means of control, problem, threat, and opportunity also in view of medical research. Although numerous solutions falling into 3 categories, technology, law, and policy, were proposed, only 3 real applications were discussed. CONCLUSIONS The issue of ownership of patient information in the context of big data is poorly researched; it is not addressed consistently and in its integrity, and there is no consensus on policy decisions and the necessary legal regulations. Future research should investigate the issue of ownership as a core research question and not as a minor fragment among other topics. More research is needed to increase the body of knowledge regarding the development of adequate policies and relevant legal frameworks in compliance with ethical standards. The combined efforts of multidisciplinary academic teams are needed to overcome existing gaps in the perception of ownership, the aspects of ownership, and the possible solutions to patient data ownership issues in the reality of big data.

scholarly journals Application of a Blockchain Platform to Manage and Secure Personal Genomic Data: A Case Study of LifeCODE.ai in China

10.2196/13587 ◽  
2019 ◽  
Vol 21 (9) ◽  
pp. e13587 ◽  
Author(s):  
Xiao-Ling Jin ◽  
Miao Zhang ◽  
Zhongyun Zhou ◽  
Xiaoyu Yu
Keyword(s):  
Big Data ◽  
Data Sharing ◽  
Data Security ◽  
Psychological Empowerment ◽  
Rapid Development ◽  
Genomic Data ◽  
Personal Genomic ◽  
Research And Innovation ◽  
Blockchain Technology ◽  
Data Ownership

Background The rapid development of genetic and genomic technologies, such as next-generation sequencing and genome editing, has made disease treatment much more precise and effective. The technologies’ value can only be realized by the aggregation and analysis of people’s genomic and health data. However, the collection and sharing of genomic data has many obstacles, including low data quality, information islands, tampering distortions, missing records, leaking of private data, and gray data transactions. Objective This study aimed to prove that emerging blockchain technology provides a solution for the protection and management of sensitive personal genomic data because of its decentralization, traceability, encryption algorithms, and antitampering features. Methods This paper describes the case of a blockchain-based genomic big data platform, LifeCODE.ai, to illustrate the means by which blockchain enables the storage and management of genomic data from the perspectives of data ownership, data sharing, and data security. Results Blockchain opens up new avenues for dealing with data ownership, data sharing, and data security issues in genomic big data platforms and realizes the psychological empowerment of individuals in the platform. Conclusions The blockchain platform provides new possibilities for the management and security of genetic data and can help realize the psychological empowerment of individuals in the process, and consequently, the effects of data self-governance, incentive-sharing, and security improvement can be achieved. However, there are still some problems in the blockchain that have not been solved, and which require continuous in-depth research and innovation in the future.

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