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Making fair Easy with fair Tools:From Creolization to Convergence

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Data Intelligence 2020年第1期2卷 87-95,305页

作者： Mark Thompson Kees Burger Rajaram Kaliyaperumal Marco Roos Luiz Olavo Bonino da Silva Santos Leiden University Medical Center Leiden2333 ZAThe Netherlands go fair international support&coordination office(GFISCO) LeidenThe Netherlands

Since their publication in 2016 we have seen a rapid adoption of the fair principles in many scientific disciplines where the inherent value of research data and,therefore,the importance of good data management and data stewardship,is *** has led to many communities asking“What is fair?”and“How fair are we currently?”,questions which were addressed respectively by a publication revisiting the principles and the emergence of fair ***,early adopters of the fair principles have already run into the next question:“How can we become(more)fair?”This question is more difficult to answer,as the principles do not prescribe any specific standard or ***,there does not yet exist a mature ecosystem of tools,platforms and standards to support human and machine agents to manage,produce,publish and consume fair data in a user-friendly and efficient(i.e.,“easy”)*** this paper we will show,however,that there are already many emerging examples of fair tools under *** paper puts forward the position that we are likely already in a creolization phase where fair tools and technologies are merging and combining,before converging in a subsequent phase to solutions that make fair feasible in daily practice.

关键词： fair data fair in practice fair tools fair application support creolization and convergence

The“A”of fair-As Open as Possible,as Closed as Necessary

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Data Intelligence 2020年第1期2卷 47-55,303,304页

作者： Annalisa Landi Mark Thompson Viviana Giannuzzi Fedele Bonifazi Ignasi Labastida Luiz Olavo Bonino da Silva Santos Marco Roos Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus 30-70010 Valenzano(BA)Italy Leiden University Medical Center Leiden2333 ZAThe Netherlands Learning and Research Resources Centre(CRAI) Universitat de BarcelonaCatalunya 08007Spain go fair international support&coordination office(GFISCO) LeidenThe Netherlands

In order to provide responsible access to health data by reconciling benefits of data sharing with privacy rights and ethical and regulatory requirements,Findable,Accessible,Interoperable and Reusable(fair)metadata should be *** to the H2020 Program Guidelines on fair Data,data should be"as open as possible and as closed as necessary","open"in order to foster the reusability and to accelerate research,but at the same time they should be"closed"to safeguard the privacy of the *** provisions on the protection of natural persons with regard to the processing of personal data have been endorsed by the European General Data Protection Regulation(GDPR),Reg(EU)2016/679,that came into force in May *** work aims to solve accessibility problems related to the protection of personal data in the digital era and to achieve a responsible access to and responsible use of health *** strongly suggest associating each data set with fair metadata describing both the type of data collected and the accessibility conditions by considering data protection obligations and ethical and regulatory ***,an existing fair infrastructure component has been used as an example to explain how fair metadata could facilitate data sharing while ensuring protection of individuals.

关键词： Accessibility of health data fair metadata GDPR Data sharing ELSI

The fair Principles:First Generation Implementation Choices and Challenges

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Data Intelligence 2020年第1期2卷 1-9,293页

作者： Barend Mons Erik Schultes Fenghong Liu Annika Jacobsen Leiden University Medical Center Leiden2333 ZAThe Netherlands go fair international support&coordination office(GFISCO) LeidenThe Netherlands National Science Library Chinese Academy of SciencesBeijing 100093China School of Economics and Management University of Chinese Academy of SciencesBeijing 100084China School of Information Management Nanjing UniversityNanjing 210023China

“fair enough”?...A question asked on a daily basis in the rapidly evolving field of open science and the underpinning data stewardship *** the publication of the fair principles in 2016,they have sparked theoretical debates,but some communities have already begun to implement fair-guided data and ***-one really argues against the idea that data,as well as the accompanying workflows and services should be findable,accessible under well-defined conditions,interoperable without data munging,and thus optimally *** fair is not a goal in itself;fair Data and Services are needed to enable data intensive research and innovation and(thus)have to be“AI-ready”(=future proof for machines to optimally assist us).However,the fact that science and innovation becomes increasingly“machine-assisted”and hence the central role of machines,is still overlooked in some cases when people claim to implement fair.

关键词： hence enable enough

The Need of Industry to go fair

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Data Intelligence 2020年第1期2卷 276-284,320,321,322页

作者： Herman van Vlijmen Albert Mons Arne Waalkens Wouter Franke Arie Baak Gerbrand Ruiter Christine Kirkpatrick Luiz Olavo Bonino da Silva Santos Bert Meerman Renger Jellema Derk Arts Martijn Kersloot Sebastiaan Knijnenburg Scott Lusher Rudi Verbeeck Jean-Marc Neefs Janssen Pharmaceuticals Antwerpseweg 152340 BeerseBelgium Phortos Consultants The Netherlands Accenture Gustav Mahlerplein 901082 MA AmsterdamThe Netherlands Zorg Instituut Nederland Willem Dudokhof 11112 ZA DiemenThe Netherlands Euretos Yalelaan 13584 CL UtrechtThe Netherlands Mobiquity Tommaso Albinonistraat 91083 HM AmsterdamThe Netherlands UCSD and National Data Service 10100 Hopkins DrLa JollaCA 92093USA go fair international support&coordination office(GFISCO) LeidenThe Netherlands go fair Foundation Rijnsburgerweg 102333 AA LeidenThe Netherlands DSM Biotechnology Center Alexander Fleminglaan 12613 AX DelftThe Netherlands Castor Paasheuvelweg 25Vleugel 5D1105 BP AmsterdamThe Netherlands

The industry sector is a very large producer and consumer of data,and many companies traditionally focused on production or manufacturing are now relying on the analysis of large amounts of data to develop new products and *** many of the data sources needed are distributed and outside the company,fair data will have a major impact,both by reducing the existing internal data silos and by enabling the efficient integration with external(public and commercial)*** companies are still in the early phases of internal data”fairification”,providing opportunities for SMEs and academics to apply and develop their expertise on fair data in collaborations and public-private *** a global Internet of fair Data&Services to thrive,also involving industry,professional tools and services are *** metrics and certifications on individuals,data,organizations,and software,must ensure that data producers and consumers have independent quality metrics on their *** this opinion article we reflect on some industry specific challenges of fair implementation to be dealt with when choices are made regarding”Industry going fair”.

关键词： fair application

Distributed Analytics on Sensitive Medical Data:The Personal Health Train

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Data Intelligence 2020年第1期2卷 96-107,305,306,307页

作者： Oya Beyan Ananya Choudhury Johan van Soest Oliver Kohlbacher Lukas Zimmermann Holger Stenzhorn Md.Rezaul Karim Michel Dumontier Stefan Decker Luiz Olavo Bonino da Silva Santos Andre Dekker Fraunhofer Institute for Applied Information Technology(FIT) 53754 Sankt AugustinGermany RWTH Aachen University 52056 AachenGermany Department of Radiation Oncology(MAASTRO) GROW School for Oncology and Developmental BiologyMaastricht University Medical Center6200 MD MaastrichtThe Netherlands Institute of Data Science Maastricht UniversityUniversiteitssingel 60Maastricht 6229 ERThe Netherlands Department of Computer Science University of TübingenTubingenBaden-Württemberg 72076Germany Quantitative Biology Center University of TübingenTubingenBaden-Württemberg 72076Germany Institute for Translational Bioinformatics University of TubingenTubingenBaden-Württemberg 72076Germany Center for Bioinformatics University of TübingenGermany go fair international support&coordination office(GFISCO) LeidenThe Netherlands

In recent years,as newer technologies have evolved around the healthcare ecosystem,more and more data have been *** analytics could power the data collected from numerous sources,both from healthcare institutions,or generated by individuals themselves via apps and devices,and lead to innovations in treatment and diagnosis of diseases;improve the care given to the patient;and empower citizens to participate in the decision-making process regarding their own health and ***,the sensitive nature of the health data prohibits healthcare organizations from sharing the *** Personal Health Train(PHT)is a novel approach,aiming to establish a distributed data analytics infrastructure enabling the(re)use of distributed healthcare data,while data owners stay in control of their own *** main principle of the PHT is that data remain in their original location,and analytical tasks visit data sources and execute the *** PHT provides a distributed,flexible approach to use data in a network of participants,incorporating the fair *** facilitates the responsible use of sensitive and/or personal data by adopting international principles and *** paper presents the concepts and main components of the PHT and demonstrates how it complies with fair principles.

关键词： Distributed analytics Data reuse fair Health data Ethics and privacy

go fair Brazil:A Challenge for Brazilian Data Science

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Data Intelligence 2020年第1期2卷 238-245,316,317页

作者： Luana Sales Patricia Henning Viviane Veiga Maira Murrieta Costa Luis Fernando Sayao Luiz Olavo Bonino da Silva Santos Luis Ferreira Pires Instituto Brasileiro em Informacao em Ciencia e Tecnologia Rio de Janeiro-RJ22290-160Brazil Universidade Federal do Estado do Rio de Janeiro Rio de Janeiro-RJ22290-240Brazil Fundacao Oswaldo Cruz Rio de Janeiro-RJ21040-900Brazil Ministerio da Ciencia TecnologiaInovacoes e ComunicacoesEsplanada dos MinisteriosBloco R-BrasiliaDFCEP 70067-900Brazil Comissao Nacional de Energia Nuclear Rua Gal.Severianon 90 Bairro:BotafogoCEP 22290-901-Rio de JaneiroBrazil go fair international support&coordination office(GFISCO) Leiden 2333 AAThe Netherlands University of Twente Enschede 7522 NHThe Netherlands

The fair principles,an acronym for Findable,Accessible,Interoperable and Reusable,are recognised worldwide as key elements for good practice in all data management *** understand how the Brazilian scientific community is adhering to these principles,this article reports Brazilian adherence to the go fair initiative through the creation of the go fair Brazil office and the manner in which they create their implementation *** contextualise this understanding,we provide a brief presentation of open data policies in Brazilian research and government,and finally,we describe a model that has been adopted for the go fair Brazil implementation *** Brazilian Institute of Information in Science and Technology is responsible for the go fair Brazil office,which operates in all fields of knowledge and supports thematic implementation ***,go fair Brazil-Health is the first active implementation network in operation,which works in all health domains,serving as a model for other fields like agriculture,nuclear energy,and digital humanities,which are in the process of adherence *** report demonstrates the strong interest and effort from the Brazilian scientific communities in implementing the fair principles in their research data management practices.

关键词： fair principles go fair go fair Brazil Open Science Research data

fair Convergence Matrix:Optimizing the Reuse of Existing fair-Related Resources

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Data Intelligence 2020年第1期2卷 158-170,313页

作者： Hana Pergl Sustkova Kristina Maria Hettne Peter Wittenburg Annika Jacobsen Tobias Kuhn Robert Pergl Jan Slifka Peter McQuilton Barbara Magagna Susanna-Assunta Sansone Markus Stocker Melanie Imming Larry Lannom Mark Musen Erik Schultes go fair international support and coordination office LeidenThe Netherlands Centre for Digital Scholarship Leiden University LibrariesLeidenThe Netherlands Max Planck Computing and Data Facility Gießenbachstraße 285748 GarchingGermany Leiden University Medical Center Leiden2333 ZAThe Netherlands Department of Computer Science Vrije Universiteit AmsterdamDe Boelelaan 11051081 HV AmsterdamThe Netherlands Czech Technical University in Prague Faculty of Information Technology(FIT CTU)16000 Prague 6Czech Republic Oxford e-Research Centre Department of Engineering SciencesUniversity of OxfordOxford OX13PJUK Environment Agency Austria A-1090 ViennaAustria TIB Leibniz Information Centre for Science and Technology HannoverGermany SURF Utrecht 3511 EPThe Netherlands Corporation for National Research Initiatives(CNRI) RestonVirginia 20191USA Stanford Center for Biomedical Informatics Research StanfordCA 94305USA

The fair principles articulate the behaviors expected from digital artifacts that are Findable,Accessible,Interoperable and Reusable by machines and by *** by now widely accepted,the fair Principles by design do not explicitly consider actual implementation choices enabling fair *** different communities have their own,often well-established implementation preferences and priorities for data reuse,coordinating a broadly accepted,widely used fair implementation approach remains a global *** an effort to accelerate broad community convergence on fair implementation options,the go fair community has launched the development of the fair Convergence *** Matrix is a platform that compiles for any community of practice,an inventory of their self-declared fair implementation choices and *** Convergence Matrix is itself a fair resource,openly available,and encourages voluntary participation by any self-identified community of practice(not only the go fair Implementation Networks).Based on patterns of use and reuse of existing resources,the Convergence Matrix supports the transparent derivation of strategies that optimally coordinate convergence on standards and technologies in the emerging Internet of fair Data and Services.

关键词： fair Implementation Choices and Challenges Convergence fair Communities

The Threat of Financial Sanctions:What Safeguards Can Central Banks Build?

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China & World Economy 2022年第3期30卷 23-41页

作者： Srichander Ramaswamy Prime Minister's office Republic of Moldova

The sanctions imposed by the G10 countries on financial institutions in Russia,including on its central bank,mil come under scrutiny by emerging market central *** will help them build appropriate safeguards against disruptions to cross-border transactions and revise their investment mandates to reduce the risk of reserve asset *** new1 financial market infrastructure and cross-border payment systems,or strengthening existing ones,will become the priority of emerging global *** goal will be to build systems that support democratic governance mechanisms,have oversight arrangements involving the central banks of trusted countries,and promote fair and safe access to clearing and settlement under well-defined policy *** use of alternatives to the US dollar as the invoicing currency in international trade will gather *** for energy and other commodities will be the change *** has an important role to play.

关键词： Bretton Woods central banks financial market infrastructure financial sanctions foreign exchange reserves SWIFT

Measuring the physical and economic impact of filarial lymphoedema in Chikwawa district,Malawi:a case-control study

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Infectious Diseases of Poverty 2017年第1期6卷 234-242页

作者： Michelle C.Stanton Masato Yamauchi Square Z.Mkwanda Paul Ndhlovu Dorothy Emmie Matipula Charles Mackenzie Louise A.Kelly-Hope Department of Parasitology Liverpool School of Tropical MedicineLiverpoolUK Ministry of Health LilongweMalawi Chikwawa District Health office ChikwawaMalawi Chiradzulu District Health office ChiradzuluMalawi Department of Pathobiology and Diagnostic Investigation Michigan State UniversityEast LansingUSA

Background:Lymphatic filariasis(LF)is one of the primary causes of lymphoedema in sub-Saharan Africa,and has a significant impact on the quality of life(QoL)of those *** this paper we assess the relative impact of lymphoedema on mobility and income in Chikwawa district,***:A random sample of 31 people with lymphoedema and 31 matched controls completed a QoL questionnaire from which both an overall and a mobility-specific score were *** mobility tests were undertaken,namely the 10 m walking test[10MWT]and timed up and go[TUG]test,and a subset of 10 casescontrol pairs wore GPS data loggers for 3 weeks to measure their mobility in a more natural *** economic data was collected from all 31 case-control pairs,and each participant undertaking the GPS activity recorded daily earnings and health expenditure throughout the observation ***:Cases had a significantly poorer overall QoL(cases=32.2,controls=6.0,P<0.01)and mobility-specific(cases=43.1,controls=7.4,P<0.01)scores in comparison to *** were also significantly slower(P<0.01)at completing the timed mobility tests,*** 10MWT speed of 0.83 m/s in comparison to 1.10 m/s for *** inconsistent relationship was observed between mobility-specific QoL scores and the timed test results for cases(10MWT correlation=−0.06,95%CI=(−0.41,0.30)),indicating that their perceived disability differed from their measured disability,whereas the results were consistent for controls(10MWT correlation=−0.61,95%CI=(−0.79,−0.34)).GPS summaries indicated that cases generally walk shorter distances at slower speeds than control,covering a smaller geographical area(median area by kernel smoothing:cases=1.25 km2,controls=2.10 km^(2),P=0.16).Cases reported earning less than half that earned by controls per week(cases=$0.70,controls=$1.86,P=0.064),with a smaller proportion of their earnings(16%vs 22%,P=0.461)being spent on ***:Those affected by lymphoede

关键词： Lymphatic filariasis Lymphoedema Morbidity Malawi GPS Mobility Quality of life