scholarly journals Ethics review of big data research: What should stay and what should be reformed?

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Agata Ferretti ◽  
Marcello Ienca ◽  
Mark Sheehan ◽  
Alessandro Blasimme ◽  
Edward S. Dove ◽  
...  
Keyword(s):  
Big Data ◽  
Data Science ◽  
Governance Mechanism ◽  
Review Committee ◽  
Data Intensive ◽  
Ethics Review ◽  
Fit For Purpose ◽  
Ethics Of Research ◽  
Second Category ◽  
Ethical Oversight

Abstract Background Ethics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts. Main text In this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical oversight. Second, we map these strengths and weaknesses onto specific challenges raised by big data research. We distinguish two categories of potential weakness. The first category concerns persistent weaknesses, i.e., those which are not specific to big data research, but may be exacerbated by it. The second category concerns novel weaknesses, i.e., those which are created by and inherent to big data projects. Within this second category, we further distinguish between purview weaknesses related to the ERC’s scope (e.g., how big data projects may evade ERC review) and functional weaknesses, related to the ERC’s way of operating. Based on this analysis, we propose reforms aimed at improving the oversight capacity of ERCs in the era of big data science. Conclusions We believe the oversight mechanism could benefit from these reforms because they will help to overcome data-intensive research challenges and consequently benefit research at large.

scholarly journals Data Science: Trends, Perspectives, and Prospects

2021 ◽  
Author(s):  
Chaolemen Borjigin ◽  
Chen Zhang
Keyword(s):  
Big Data ◽  
Data Science ◽  
Scientific Discovery ◽  
Big Data Analytics ◽  
Theoretical Studies ◽  
Data Intensive ◽  
Data Ethics ◽  
Big Data Visualization ◽  
Data Products ◽  
And Performance

Abstract Data Science is one of today’s most rapidly growing academic fields and has significant implications for all conventional scientific studies. However, most of the relevant studies so far have been limited to one or several facets of Data Science from a specific application domain perspective and fail to discuss its theoretical framework. Data Science is a novel science in that its research goals, perspectives, and body of knowledge is distinct from other sciences. The core theories of Data Science are the DIKW pyramid, data-intensive scientific discovery, data science lifecycle, data wrangling or munging, big data analytics, data management and governance, data products development, and big data visualization. Six main trends characterize the recent theoretical studies on Data Science: growing significance of DataOps, the rise of citizen data scientists, enabling augmented data science, diversity of domain-specific data science, and implementing data stories as data products. The further development of Data Science should prioritize four ways to turning challenges into opportunities: accelerating theoretical studies of data science, the trade-off between explainability and performance, achieving data ethics, privacy and trust, and aligning academic curricula to industrial needs.

scholarly journals Commons at the Intersection of Peer Production, Citizen Science, and Big Data: Galaxy Zoo

2017 ◽  
Author(s):  
Michael J Madison
Keyword(s):  
Big Data ◽  
Citizen Science ◽  
Large Scale ◽  
Data Science ◽  
Digital Data ◽  
Peer Production ◽  
Data Intensive ◽  
Knowledge Commons ◽  
Large Numbers ◽  
Citizen Science Project

The knowledge commons research framework is applied to a case of commons governance grounded in research in modern astronomy. The case, Galaxy Zoo, is a leading example of at least three different contemporary phenomena. In the first place Galaxy Zoo is a global citizen science project, in which volunteer non-scientists have been recruited to participate in large-scale data analysis via the Internet. In the second place Galaxy Zoo is a highly successful example of peer production, sometimes known colloquially as crowdsourcing, by which data are gathered, supplied, and/or analyzed by very large numbers of anonymous and pseudonymous contributors to an enterprise that is centrally coordinated or managed. In the third place Galaxy Zoo is a highly visible example of data-intensive science, sometimes referred to as e-science or Big Data science, by which scientific researchers develop methods to grapple with the massive volumes of digital data now available to them via modern sensing and imaging technologies. This chapter synthesizes these three perspectives on Galaxy Zoo via the knowledge commons framework.

scholarly journals The Sciences Underlying Smart Sustainable Urbanism: Unprecedented Paradigmatic and Scholarly Shifts in Light of Big Data Science and Analytics

Smart Cities ◽  
2019 ◽  
Vol 2 (2) ◽  
pp. 179-213 ◽  
Author(s):  
Simon Elias Bibri
Keyword(s):  
Big Data ◽  
Data Science ◽  
Smart Cities ◽  
Urban Sustainability ◽  
Urban Life ◽  
Transformative Power ◽  
Management Planning ◽  
Data Intensive ◽  
Sustainable Urbanism ◽  
The Face

As a new area of science and technology (S&T), big data science and analytics embodies an unprecedentedly transformative power—which is manifested not only in the form of revolutionizing science and transforming knowledge, but also in advancing social practices, catalyzing major shifts, and fostering societal transitions. Of particular relevance, it is instigating a massive change in the way both smart cities and sustainable cities are understood, studied, planned, operated, and managed to improve and maintain sustainability in the face of expanding urbanization. This relates to what has been dubbed data-driven smart sustainable urbanism, an emerging approach that is based on a computational understanding of city systems that reduces urban life to logical and algorithmic rules and procedures, as well as employs a new scientific method based on data-intensive science, while also harnessing urban big data to provide a more holistic and integrated view and synoptic intelligence of the city. This paper examines the unprecedented paradigmatic and scholarly shifts that the sciences underlying smart sustainable urbanism are undergoing in light of big data science and analytics and the underlying enabling technologies, as well as discusses how these shifts intertwine with and affect one another in the context of sustainability. I argue that data-intensive science, as a new epistemological shift, is fundamentally changing the scientific and practical foundations of urban sustainability. In specific terms, the new urban science—as underpinned by sustainability science and urban sustainability—is increasingly making cities more sustainable, resilient, efficient, and livable by rendering them more measurable, knowable, and tractable in terms of their operational functioning, management, planning, design, and development.

scholarly journals The Relationship between Inpatient HIV/AIDS Characteristics and Hospital Charges: Use of Big Data

2016 ◽  
Vol 1 (1) ◽  
pp. 1
Author(s):  
Priscilla O. Okunji ◽  
Johnnie Daniel ◽  
Saadatmand Frough
Keyword(s):  
Big Data ◽  
Data Science ◽  
Data Extraction ◽  
Hospital Staff ◽  
Hospital Charges ◽  
Data Intensive ◽  
Effective Use ◽  
The Relationship ◽  
And Training ◽  
Hiv Aids

With the adoption of Electronic Health Records (EHR) by acute care hospitals, research in biomedical field has become increasingly data-intensive as investigators are rapidly using large, complex, and diverse datasets. Big data to knowledge (BD2K) focus is to enhance the advances in data acquisition, analytics, policy, and training which are critically needed for the effective use of big data. Current information shows that minorities are more likely to be diagnosed with HIV infection compared to their white counterparts. There are few research studies on the association between hospital charges and inpatient HIV/AIDS characteristics. The goal of this study was to conduct an investigation on the association and the factors that affect hospital charges of inpatient HIV/AIDS adults with mental illness and behavioral disorders. An estimation of inpatients HIV/AIDS hospital charges was conducted by data extraction and analytics from the Nationwide Inpatient Sample (NIS) Healthcare Costs and Utilization Program (HCUP) for 2007 and 2010. Regression analysis was used to test the study hypotheses. The critical ranking effects of variables were seen in the specific hierarchical association between the hospital charges and total number of procedures, hospital staff, total number of comorbidities, bipolar, and drug abuse. The outcome of our research could be used to support the advances in clinical data analytics, big data to knowledge (BD2K) and data science.

Issues in security and privacy of big data

2018 ◽  
Vol 7 (12) ◽  
pp. 1
Author(s):  
Shaveta Bhatia
Keyword(s):  
Cloud Computing ◽  
Big Data ◽  
Approximate Method ◽  
Biomedical Research ◽  
Cyber Security ◽  
Data Science ◽  
Third Party ◽  
Security And Privacy ◽  
Security Threats ◽  
The Third

 The epoch of the big data presents many opportunities for the development in the range of data science, biomedical research cyber security, and cloud computing. Nowadays the big data gained popularity.  It also invites many provocations and upshot in the security and privacy of the big data. There are various type of threats, attacks such as leakage of data, the third party tries to access, viruses and vulnerability that stand against the security of the big data. This paper will discuss about the security threats and their approximate method in the field of biomedical research, cyber security and cloud computing.

Big Data Driven Clinical Informatics & Surveillance (BDD_CIS) – A Multimodal Database Focused Clinical, Community, and Multi-Omics Surveillance Plan for COVID-19: A study Protocol (Preprint)

2020 ◽  
Author(s):  
Bankole Olatosi ◽  
Jiajia Zhang ◽  
Sharon Weissman ◽  
Zhenlong Li ◽  
Jianjun Hu ◽  
...  
Keyword(s):  
Big Data ◽  
South Carolina ◽  
Data Science ◽  
Age Groups ◽  
The Elderly ◽  
The United States ◽  
Data Sources ◽  
Patient Registries ◽  
Multiple Partner ◽  
Multimodal Data

BACKGROUND The Coronavirus Disease 2019 (COVID-19) caused by the severe acute respiratory syndrome coronavirus (SARS-CoV-2) remains a serious global pandemic. Currently, all age groups are at risk for infection but the elderly and persons with underlying health conditions are at higher risk of severe complications. In the United States (US), the pandemic curve is rapidly changing with over 6,786,352 cases and 199,024 deaths reported. South Carolina (SC) as of 9/21/2020 reported 138,624 cases and 3,212 deaths across the state. OBJECTIVE The growing availability of COVID-19 data provides a basis for deploying Big Data science to leverage multitudinal and multimodal data sources for incremental learning. Doing this requires the acquisition and collation of multiple data sources at the individual and county level. METHODS The population for the comprehensive database comes from statewide COVID-19 testing surveillance data (March 2020- till present) for all SC COVID-19 patients (N≈140,000). This project will 1) connect multiple partner data sources for prediction and intelligence gathering, 2) build a REDCap database that links de-identified multitudinal and multimodal data sources useful for machine learning and deep learning algorithms to enable further studies. Additional data will include hospital based COVID-19 patient registries, Health Sciences South Carolina (HSSC) data, data from the office of Revenue and Fiscal Affairs (RFA), and Area Health Resource Files (AHRF). RESULTS The project was funded as of June 2020 by the National Institutes for Health. CONCLUSIONS The development of such a linked and integrated database will allow for the identification of important predictors of short- and long-term clinical outcomes for SC COVID-19 patients using data science.

Produção internacional sobre ciência orientada a dados: análise dos termos data science e e-science na scopus e na web of science

2017 ◽  
Vol 12 (1) ◽  
Author(s):  
Leilah Santiago Bufrem ◽  
Fábio Mascarenhas Silva ◽  
Natanael Vitor Sobral ◽  
Anna Elizabeth Galvão Coutinho Correia
Keyword(s):  
Big Data ◽  
Open Access ◽  
Grid Computing ◽  
Digital Library ◽  
Data Science ◽  
Web Of Science ◽  
Computer Systems ◽  
Distributed Computer Systems

Introdução: A atual configuração da dinâmica relativa à produção e àcomunicação científicas revela o protagonismo da Ciência Orientada a Dados,em concepção abrangente, representada principalmente por termos como “e-Science” e “Data Science”. Objetivos: Apresentar a produção científica mundial relativa à Ciência Orientada a Dados a partir dos termos “e-Science” e “Data Science” na Scopus e na Web of Science, entre 2006 e 2016. Metodologia: A pesquisa está estruturada em cinco etapas: a) busca de informações nas bases Scopus e Web of Science; b) obtenção dos registros; bibliométricos; c) complementação das palavras-chave; d) correção e cruzamento dos dados; e) representação analítica dos dados. Resultados: Os termos de maior destaque na produção científica analisada foram Distributed computer systems (2006), Grid computing (2007 a 2013) e Big data (2014 a 2016). Na área de Biblioteconomia e Ciência de Informação, a ênfase é dada aos temas: Digital library e Open access, evidenciando a centralidade do campo nas discussões sobre dispositivos para dar acesso à informação científica em meio digital. Conclusões: Sob um olhar diacrônico, constata-se uma visível mudança de foco das temáticas voltadas às operações de compartilhamento de dados para a perspectiva analítica de busca de padrões em grandes volumes de dados.Palavras-chave: Data Science. E-Science. Ciência orientada a dados. Produção científica.Link:http://www.uel.br/revistas/uel/index.php/informacao/article/view/26543/20114

Impact of Big Data over Telecom Industry

2018 ◽  
Vol 6 (2) ◽  
Author(s):  
Muhammad Waqar Khan ◽  
Muhammad Asghar Khan ◽  
Muhammad Alam ◽  
Wajahat Ali
Keyword(s):  
Big Data ◽  
Data Science ◽  
Cell Phones ◽  
Smart Phones ◽  
World Population ◽  
Huge Amount ◽  
Scale Down ◽  
Telecom Industry ◽  
Telecom Sector ◽  
Theoretical Computing

<p>During past few years, data is growing exponentially attracting researchers to work a popular term, the Big Data. Big Data is observed in various fields, such as information technology, telecommunication, theoretical computing, mathematics, data mining and data warehousing. Data science is frequently referred with Big Data as it uses methods to scale down the Big Data. Currently<br />more than 3.2 billion of the world population is connected to internet out of which 46% are connected via smart phones. Over 5.5 billion people are using cell phones. As technology is rapidly shifting from ordinary cell phones towards smart phones, therefore proportion of using internet is also growing. There<br />is a forecast that by 2020 around 7 billion people at the globe will be using internet out of which 52% will be using their smart phones to connect. In year 2050 that figure will be touching 95% of world population. Every device connect to internet generates data. As majority of the devices are using smart phones to<br />generate this data by using applications such as Instagram, WhatsApp, Apple, Google, Google+, Twitter, Flickr etc., therefore this huge amount of data is becoming a big threat for telecom sector. This paper is giving a comparison of amount of Big Data generated by telecom industry. Based on the collected data<br />we use forecasting tools to predict the amount of Big Data will be generated in future and also identify threats that telecom industry will be facing from that huge amount of Big Data.</p>

scholarly journals Record linkage of routine data with cohorts’ data of infants under European and Portuguese law

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
J Doetsch ◽  
I Lopes ◽  
R Redinha ◽  
H Barros
Keyword(s):  
Big Data ◽  
Data Processing ◽  
Data Protection ◽  
Record Linkage ◽  
Data Science ◽  
Personal Data ◽  
Routine Data ◽  
Cohort Data ◽  
Education Data ◽  
Explicit Consent

Abstract The usage and exchange of “big data” is at the forefront of the data science agenda where Record Linkage plays a prominent role in biomedical research. In an era of ubiquitous data exchange and big data, Record Linkage is almost inevitable, but raises ethical and legal problems, namely personal data and privacy protection. Record Linkage refers to the general merging of data information to consolidate facts about an individual or an event that are not available in a separate record. This article provides an overview of ethical challenges and research opportunities in linking routine data on health and education with cohort data from very preterm (VPT) infants in Portugal. Portuguese, European and International law has been reviewed on data processing, protection and privacy. A three-stage analysis was carried out: i) interplay of threefold law-levelling for Record Linkage at different levels; ii) impact of data protection and privacy rights for data processing, iii) data linkage process' challenges and opportunities for research. A framework to discuss the process and its implications for data protection and privacy was created. The GDPR functions as utmost substantial legal basis for the protection of personal data in Record Linkage, and explicit written consent is considered the appropriate basis for the processing sensitive data. In Portugal, retrospective access to routine data is permitted if anonymised; for health data if it meets data processing requirements declared with an explicit consent; for education data if the data processing rules are complied. Routine health and education data can be linked to cohort data if rights of the data subject and requirements and duties of processors and controllers are respected. A strong ethical context through the application of the GDPR in all phases of research need to be established to achieve Record Linkage between cohort and routine collected records for health and education data of VPT infants in Portugal. Key messages GDPR is the most important legal framework for the protection of personal data, however, its uniform approach granting freedom to its Member states hampers Record Linkage processes among EU countries. The question remains whether the gap between data protection and privacy is adequately balanced at three legal levels to guarantee freedom for research and the improvement of health of data subjects.

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